"down there"

I took the Summer Off...

2011-10-06T03:13:00.000-07:00

…and then a bit more after that. Who knows if anyone is still even reading my blog. I don’t blame you if you’ve abandoned it, since I sort of did - at least temporarily. It’s not that I had nothing to say – there’s been plenty to talk about and my problems are far from over –I guess I just wanted to take a break. I’m a teacher so I was taking the summer off from work and from blogging I guess.

I won’t attempt to try and remember everything that I have missed writing about these past 4 months. Mainly, I still have pain with sex and I still have no desire for sex. Those are the two big problems that we are still working on. We can sort of have sex, but it never goes all the way because if it’s not hurting at first, it starts hurting after a few minutes of friction. We’re trying all different kinds of lube. So far the best combination is coconut oil mixed with Slippery Stuff. The coconut oil lasts longer and the Slippery Stuff is thicker so they both serve a purpose. I have some other kinds coming in the mail that are supposed to be good too. We have tried Good Clean Love once,but I felt a lot of burning. I don’tknow if it was the lube or something else since we only tried it once, so I’ll keep you posted on that.

We decided to tryout a new doctor to see if we can get some other ideas on how to fix my problems. Dr. Goldstein definitely helped and I would recommend him, but lately he’s seemed a bit flummoxed on what to do next – he said that usually people are cured by now and I’m not. Last week we went down to Chapel Hill to the UNC Vulvar Pain Clinic. I saw the Physician’s Assistant of Dr. Zolnoun, Elisabeth Johnson. She was really nice, had a good sense of humor, and made me feel as comfortable as one can feel in that situation.

Elisabeth had a very different take on what my problem is: She asked a lot of questions about clenching of teeth, headaches, constipation, anxiety, tiredness, etc. during the exam. Then she did a very thorough Q-tip exam. She feels strongly that it is a nerve issue, not a skin or muscle issue at this point. She said they see a lot of the above symptoms in patients similar to me and they treat this as a nervous system issue. Essentially that my nervous system is a bit out of whack and not regulated as well as other people's (I understood it as a heightened sense of tension that displays itself both psychologically and physiologically in a variety of ways). She said it helps explain why I can feel pain in different ways and places from day today and she even said my exam was "inconsistent.” So basically they're trying to put that in order first. They put me on low doses of Propronolol (a blood pressure medicine) and Cymbalta (a depressions medicine), however neither of them are meant to treat blood pressure or depression issues - they are meant to treat the nervous system somehow. They have apparently had success using drugs to help regulate the overall nervous system and then isolating any issues down there (even stating that sometimes they think the issue is one place and once the nervous system is under control they find the true problem is different than they initially thought). So we go back to UNC in 8 weeks hopefully with a more regulated nervous system (which could also help with some of the other seemingly unrelated issues I have, like constipation, clenching my teeth, constant fatigue, etc.). She mentioned the possibility of a nerve block at some point, but said she wouldn't know until the systemic issue was corrected. She was hesitant to call this Pudendal Neuralgia because she doesn’t feel comfortable diagnosing me yet and because she has read all the horror stories online and she doesn’t want me looking it up and getting freaked out. So I won’t. I’ve read many blogs of women who have Pudendal Neuralgia and it sounds terrible. But I’ll just wait and see what happens.

So far the only thing the drugs are doing is giving me stomach problems. The doctor said that the blood pressure one can cause nausea at first, but I’ve had little nausea, a little constipation, and a LOT of gas. I hope it goes away soon. I can’t be farting these deadly-smelling farts while I’m teaching a room full of 7th graders! But I’ve been on the drugs less than a week so we’ll see what happens.

This is long, so I’ll stop. If you’re still reading my blog, thanks! I’ll try to do a better job of keeping you updated.

Recipe for a Perfect Start to Summer

2011-06-24T08:53:00.000-07:00

I wrote a very encouraging post on Monday about our progress and how well it's going. Monday night my vagina started burning. I went to bed hoping that it was just a burning vagina that would go away over night, but no. I hardly slept it burned so bad and in the morning I had to face the reality that I most likely had a bladder infection. I went to the emergency room and I did indeed have a bladder infection. With the last two bladder infections I've had (the previous one a year and half ago and the most pain I've ever felt in my life), I haven't had the typical symptom of abdominal pain. My pain is mostly intense vaginal burning. Now it's probably really my bladder that is burning but to me it feels like my vagina is burning. So I felt that way again, although this time my pain was around a 9 instead of the 10 that it was last time.

I actually had to miss the last day of school for the students because I was in so much pain I just couldn't imagine going to work.

So I took the antibiotic that the doctor prescribed and then guess what happened? I bet you've already guessed. Yes, I felt a yeast infection coming on. My vagina started to itch yesterday and I knew. Usually when prescribed an antibiotic I will ask for Diflucan, but I just wasn't thinking. So I went to the gynecologist today and I do have a mild yeast infection. Oh, and I also have a little blood in my urine, which they didn't mention at the hospital.

So to sum up, my first week of summer break has been met with a burning and itching vagina and orange pee that burns when it comes out. I hope to be past all this soon so we can get back to our activities without losing too much progress.

BLAH!!

Penis Colada

2011-06-20T09:29:00.000-07:00

My husband and I have been making good progress with penetration. We try to do it at least 4 times per week, but often more. Sometimes it hurts, sometimes it burns, and sometimes it's no problem. Now, I haven't felt anything that's actually pleasurable; it still just feels like there's a foreign object inside my vagina, but I have hope that the pleasure will come eventually.

Here is our updated routine:
Step One: take Valium 30 minutes or more before penetration (to relax both mind and muscles).
Step Two: heat pelvic area for at least 15 minutes before (using hot bath or heating pad).
Step Three: apply lidocaine to sensitive spots inside vagina.
Step Four: Husband wears glove, covers finger in coconut oil and does some pelvic clock stretching with his finger. He holds down on muscles that are sensitive and we try to loosen up the muscles.
Step Five: I put in my biggest dildo for a few minutes just to prepare my vagina for the penis (also covered in coconut oil).
Step Six: Penis in vagina! More oil of course. We have found two positions that usually work, although it's never consistent on which one feels better or worse than the other. Right now we're sticking to me on top either facing him or facing away from him. Facing him there is more of a chance of my sensitive G-spot area to be unpleasantly rubbed, but there's less of a chance that it will make my PC muscles feel too stretchy. The opposite is true for me on top facing away from him. In this position there is no irritation on the G-spot area, but if I'm having a tight muscle day it can be painful. So we usually do both and pick the best one. We stay this way for about 10 minutes either staying still while I do kegels or we do slow in-and-out that I control.

As you can see, it's still all very technical, but I guess it has to be that way for now. I'm still trying to retrain my body and my mind to believe that sex won't hurt, and hopefully that sex is actually pleasurable.

We've been using Coconut Oil ever since my PT recommended it and I really like it. Unlike water-based lubricants, it sticks around and you really don't have to keep reapplying. It makes everything nice and slippery. And every time we use it I feel like I'm at the beach because of the coconut smell! The problem with the coconut oil is that it's an oil. And oil does not wash out of the sheets. We tried using two towels on top of the sheets, but it seeped through so I ended up buying a waterproof crib pad at Target that is made for babies that wet the bed. It has little sheep on it and it's only the size of a crib, but it really works quite well. Even though it's waterproof, it's soft and it doesn't feel or sound plasticy. Now we use the crib pad with a towel on top and our sheets are safe. When I think about it it makes me chuckle, but hey, whatever works. It's worth it to be able to keep using the coconut oil without ruining our sheets.

The Penis Process

2011-05-26T08:17:00.000-07:00

My husband and I have inserted the penis three times so far and I thought it might be helpful to some if I detailed the process that we go through to make sure it's as successful as possible. We've had a slightly different process each time, but I'll lay out the one I feel has been the most effective.

At least an hour before we start I take Valium - this is to calm my mind and help me with the major anticipatory anxiety that I feel about the penis.

I prepare the Penis Insertion Station (I've never really called it that) by laying several towels down on the bed, as well as some hand towels, lubrication, and a large dilator/dildo. The reason for all the towels is that we are using Coconut Oil as our lubricant, by recommendation of my PT, and man is it messy! Oil does not come out in the wash and we don't want to stain our sheets.

A note about the Coconut Oil: I was telling my PT that when I tried keeping the dilator in for long periods of time, it felt like my body was absorbing all the lubricant and then when I pulled the dilator out my vagina was dry and it felt like the dilator was taking some of my skin with it (painful!). So she suggested that using an oil-based lubricant would be better because water-based lubricants will be absorbed by your body at a much faster rate. She suggests Coconut Oil specifically because she says it's all natural and inherently antibacterial. It also smells good, but you can get an unscented kind if you don't like the smell. She also said that using Olive Oil is great too (Coconut Oil is a bit expensive).

Back to the process: I take a warm bath for about 30 minutes and just lay there and read my book and really try to relax all my muscles.

When I get out of the bath it's time for stretching and penis entry. So first I lay down on the towels that are on the bed and my husband uses his finger (lubricated) to go around the pelvic clock and try to work out any tension that I feel in any of my muscles. My PT taught him how to move my legs in different ways so that the muscle is in the best position for relaxation whenever we hit a sensitive spot.

After we've worked on the muscles individually with his finger I will put the largest dilator or my largest vibrating dildo in for a few minutes, just to prepare my vagina for the penis. This also involves a healthy lathering of coconut oil.

After a few minutes I take out the dilator, do some contract/releases, and we insert the penis. We have tried a number of different positions in an effort to minimize hitting a certain spot that is painful for me (top of pelvic clock kind of near urethra). We've tried me on top, spooning on our sides with him behind me, doggy style (why be PC about it - we all know what doggy style is), and what my PT calls the fork position, which is really hard to describe. The fork is him laying on his side facing me while I lay on my back perpendicular to him with my legs draped over his pelvic area. Honestly, it's hard to tell which position is best at this point. It all feels very stretchy. I can definitely tell that some are less painful on that spot than others, but it's not as much about the position as it is about how I position myself in the position (if that makes sense).

We stay still for several minutes and then we'll do a slow moving in and out. Movement is what causes me the most pain, so when I say slow I mean SLOW movement. We figured out yesterday that if we do a full in and out motion (meaning the penis goes all the way in and almost all the way out) the penis rubs across that sensitive spot of mine, and that if we don't pull the penis out quite as far it helps a lot. As for movement, the easiest position is me on top because I have total control.

I have found myself very sore after these encounters. I have two different kinds of pain: The first pain is more of a stretching type pain. My husband penis is large so it feels very stretchy when it's in my vagina. The second pain is the one spot inside that does not like to be touched. I'm going to try and see if Lidocaine can help with the spot - it has never helped in the past, but maybe that's because my problems were too huge and too numerous to be fixed by Lidocaine. But now that I can pinpoint a specific area of pain, perhaps I can put Lidocaine there and it might help. As for the stretchy pain, I'm hoping that the more we do it, the less it will hurt, just like with dilating. I'm also going to try putting in a Vitamin E suppository after these episodes to try and soothe my sore vagina.

Most importantly we have to make sure that we do this frequently to retrain my vagina (and my head) and I have to not get discouraged when I feel sore. It's part of the process and I have hope that it will get better.

My biggest fear is still that my libido will never come back. This post has been very technical and that's what everything is right now: technical. I understand that at this point I cannot expect to feel desire or pleasure when it still hurts and feels sore, but I am terrified that once the pain goes away I still won't actually want to have sex. I'm trying not to let that fear take over me. I'm trying to focus on the great strides that we have made. I am very encouraged by our progress, but that fear is there, so I'm acknowledging it.

The Sword Has Found Its Sheath

2011-05-16T04:59:00.000-07:00

After more than two years of no penis/vagina contact, we have finally taken the first step to getting back to intercourse. My husband and I have a plan to loosely follow the steps outlined in the book Completely Overcome Vaginismus. We decided to start with partial insertion of the penis. First I took a bath to relax my muscles (and some Valium to relax my mind). Then we did some dilating first using my husband's finger, just to make sure that all the muscles were nice and loose. The next step was to put in the largest dilator for a few seconds, then I pulled out the dilator and directly put the penis in. I was on top so that I had all the control. Of course we used lots of lube during this whole process.

It felt tight, but okay. My husband's penis is large (and sadly that is not something I want to brag about) so it definitely felt like it was stretching, but it wasn't necessarily a painful stretch. The partial insertion really felt so easy that I decided to just go all the way down and have his whole penis inside. It was easy enough to get there, but it was definitely stretchy. We hung out there for a few minutes and I tried moving my body around to see which positions were the most or least comfortable. The most comfortable position with me on top was to have my torso sort curved in a C position, kind of like a hunch-back. I'm not sure I could actually have sex this way because it would hurt my back if I was like that for too long, but at this point we're just experimenting to see what's the least painful on my vagina (specifically the urethra/G-spot that is the most painful spot for me). After a few minutes we separated and layed down for a bit, then we decided to try it again just for extra stretching.

Overall I think it was a big success. We agreed from the beginning that there would be no expectation of pleasure - that this was more of a step in the process of getting to the point of real intercourse. There was no moving in and out - that will come later. But it's been two years and I finally got that phallus back in my chalice! :)

We will do this a few more times and then move on to the next step.

Yay for us!

Extended Dilations, Hormones and More

2011-05-12T04:40:00.000-07:00

It's been a couple weeks since I got the Botox injections in my Pubococcygeus and my Puborectalis muscles. It is really hard to tell what's happening down there, but I think that it has made my muscles more relaxed. It's easiest to feel this when either the PT is working down there or my husband is helping me dilate. When I do it myself it's harder to tell any difference, but when they do it, I (and they) can tell that the muscles aren't as resistant. So that's good news and hopefully a good sign for things to come.

My therapist recently went to a seminar for sexual pain and among the doctors there were Dr. Goldstein and also Dr. Pacik. She spoke to both of them about me. I have never seen Dr. Pacik, but she wanted his opinion on what to do after getting botoxed. His procedure is very different from Dr. G's. Dr. Pacik puts the patient to sleep to administer the Botox and when she wakes up she has a dilator in her vagina. Now this is usually for cases that are much more extreme than mine - I can get a dilator in my vagina with no problem and no anesthesia. However, Dr. Pacik feels strongly that women with any level of pelvic pain should have a dilator inside for many hours each day. I believe his theory is that having the dilator inside for that long will help to retrain the muscles and get them used to having something in there. He feels strongly that this is part of the process. Dr. Goldstein, on the other hand, thinks this is a bunch of malarkey. But my therapist thought there was no harm in giving it a try so I talked to my PT about it and she said to go ahead and try it (my PT had never heard of doing these extended dilations before).

The longest I've been able to stand having the dilator inside is about 40 minutes. It's actually harder than I thought it would be. I thought I could just lay there and keep that dilator in there for a long time with just slight discomfort. But it actually becomes more and more painful the longer it stays in. At first I tried it with the largest dilator, but it pushes in the top spot that is very tender for me (12 o'clock on the inside - basically where the G-spot is, where the urethra is as well). So I tried going a size down. This helped a little, but it's still painful. Another problem is that it really hurts to pull it out after having it in there for so long, even though I've lubed it up like crazy. It's like my body absorbs the lube and by the time I pull it out there's really none left. Yesterday I tried relubing every 5 minutes or so, but it still felt painful every time I pulled it out. I guess I'll try the extended dilation a few more times, but as of right now I feel like it's causing more pain than actually helping.

My hormones were retested a couple weeks ago and my testosterone is finally within the normal range. However I have to keep using the Androgel - 1/2 gram rubbed on thigh each day - indefinitely. Dr. G's nurse said that some people have to keep using it forever to maintain the right levels, while others are able to wean off of it eventually. I didn't realize this, and although it's not a huge deal, I really don't like the idea of having to put T gel on my legs every day for the rest of my life. It makes me hairy and pimply. If it actually gave me a sex drive I might say that it's a fair trade, but it doesn't so I'm not feeling the motivation to do this forever. Hopefully it won't be forever.

I've Been Botoxed

2011-04-20T07:08:00.000-07:00

Yesterday was the big injection day. I wasn't very nervous leading up to it. I only really got nervous when I was laying on the table with my legs spread and looking at needles. The idea of having someone put needles into your vagina is quite frightening.

The bigger hole is the vagina and the smaller
hole is the anus.

First Dr. Goldstein did a short exam to pinpoint the muscles that were the most tense. I had 100 units of Botox and he decided to split it like this: 50 units in the Puborectalis (6 on the pelvic clock) and 25 each in the left and right Pubococcygeus (around 4 and 8 on the pelvic clock). My 6 o'clock muscle was definitely the most tender, which is why he put 50 units in that muscle.

As for the procedure itself, I'm not gonna lie. It was painful. Fortunately it was a very short-lived pain. I was afraid of the pricking of the needle, but I actually hardly felt that. The pain came when he injected the Botox into my muscles. It felt like fire was spreading through my vagina and all the way to my anus. It was intense, but it only lasted a couple minutes. Within 5 minutes I only felt a slight soreness and no fire, so all in all, not bad if you can deal with a couple minutes of fire. He told me to squeeze and release those muscles at least 100 times that day to make sure the Botox got spread around the muscles. Now we just wait to see what happens - I'm supposed to do aggressive PT and see if it made a difference.

A side note: while we were sitting in Dr. G's office after the procedure he mentioned that my therapist is the best patient advocate he has ever encountered. He actually said, "She's a pain in my ass, but that's not necessarily a bad thing." She will call him until she gets a response and she demands answers. My husband and I feel very lucky to have her in our corner and we agreed that we love that she is a pain in our doctors' asses. Dr. Goldstein referred to her as our quaterback. Now I do know that the quarterback is a very important position on the football field, but that's where my understanding of this metaphor ends. However I'm sure my husband appreciated the sports reference. I'll have to get him to explain to me exactly why our therapist is the quarterback. And now I'm wondering what position our other doctors play. Is Dr. G the tight end? Our PT the kicker?

So getting the Botox was pretty much a positive experience. I had intense pain for a couple minutes, but it subsided quickly. I just hope it helps.

It's Not Just About the Vagina (unfortunately)

2011-04-06T13:37:00.000-07:00

It has taken me a while to realize just how much my mental state has been affecting things in my life. I knew I was really depressed for a few months and that the depression was really making me feel sad and hopeless all the time. But now that I'm feeling less depressed I realize that it was more than just sadness. Last semester I was hating my job so much that I would imagine getting into car accidents just so I wouldn't have to go to work. My students got on my last nerve every day and I had nothing good to say. I will say that part of that was having the class from hell, but I think a significant part of it was also the fact that I was experimenting with different anti-anxiety drugs, some with drastic and negative side effects. I mean, I can definitely remember that when I was in the height of my Prozac reaction I was more snippy and sarcastic with my students, more mean and more negative. I thought that I was really depressed from about January through mid March, but I really think it started before that and I just didn't realize it because all these drugs confused things. I was taking Prozac around November-December and even though I didn't feel that total hopelessness that I felt in the beginning of 2011, I was definitely in a negative place. I'm wondering if I would have gone into the depression of early 2011 earlier if I hadn't been taking all those drugs at the end of 2010 - even though they had horrible side effects they may have also been staving off the depression. Because after the Prozac episode I went off all the drugs completely for a couple months (those months being January and February). It wasn't until I started taking Zoloft and Tranxene in March that my attitude and mindset started turning around to the positive side of things.

I hate that I have to take a drug to make myself feel better. I mean, I'm certainly glad that it's helping, but I hate that it has to be this way. I just hope that once I get through all this vagina mess maybe I can stop taking the drugs. I just don't want to be on drugs forever.

As for my job, it's still stressful, but I'm dealing with it now. I was seriously considering applying to another school district for a while, but now I feel like I at least want to give this school one more year. I feel like I wasn't in my right mind for much of this school year and maybe jumping into another school isn't really the solution.

I'm certainly not all sunshine and butterflies at his point, but I do feel much better mentally. I still have my sad days and my freak out moments of "will I ever want sex again?", but it's not like it was for the last few months. I do have hope again.

My Botox appointment is set for April 19. Cross your fingers!

Most interesting searches that led to my blog

2011-03-30T12:52:00.000-07:00

-normal vagina

-women vegena

-stadium seats

-discharge smells like cabbage

-why is there wrinkles on the bottom of my vagina

-Q tip

-lady sexy periods vagina game

-vagina location stomach

-what does a womans vagina look like

My favorite is stadium seats. I don't know if these people found what they were looking for, but at least it gives me some amusement.

Updates

2011-03-25T09:17:00.000-07:00

I'm still working on getting everything straight with the Botox. My insurance and Dr. Goldstein's office are calling back and forth and it should all be worked out in the next week or so. Then I'll make the appointment.

I've started on two new drugs for my anxiety and depression. I'm taking 25 mg of Zoloft once a day and 7.5 mg of Tranxene (1/2 in the morning and 1 whole at night). I started on the Tranxene doing 1/2 in the morning and 1/2 at night, but now I've gone up a bit. When I first started taking the drugs I got those bad headaches that I got when I took the Prozac. The worst of the headaches was about two days after I first started taking Zoloft and they slowly tapered off for about 2 weeks. I'm happy to say that I am rid of them now. Otherwise I would not still be taking that drug. I am actually feeling a lot better - what a relief! I'm in a better mood, I don't feel so depressed all the time, and I've noticed that I have more patience with my students too. I'm also sleeping better (and having crazy dreams, which are always fun). I'm encouraged that I'm finally taking some drugs that seem to be helping; I just hope they continue to help and don't end up making me crazy like Prozac did.

My husband and I are starting to try and get back to some intimate activities, like a 10 second kiss (sorry if that's too racy for you!) and maybe some massaging and things like that. Hopefully now that my mental state is in a better place I'll be able to progress in the intimacy part more quickly. I also want to be able to try sex one I get the Botox because that's really the whole point. I feel like we are so far from sex, but like my therapist says, I'm not going to want it until I have proof that it doesn't hurt.

It turns out that the AndroGel did do its job. Apparently I now have too much testosterone and Dr. G wants me to use half the amount I was using for a while. I'm not sure why I shouldn't just stop using it if my T is too high, but I do what the doctor tells me. I'm actually a little disappointed that my testosterone is high because I was hoping that it would make me super horny and full of energy - it did not. It did, however, give me lots of acne.

But I'm feeling more optimistic these days and I hope that the feeling continues. Being depressed sucks.

You want less wrinkles in your vagina?

2011-03-10T13:19:00.000-08:00

It turns out that when you call your insurance company to get approval for vaginal botox injections, it's quite an ordeal. I was told at Dr. G's office that if I get the botox myself and bring it in that it would be a lot less expensive than having it provided by the doctor's office. So I had to call my insurance to both find out the approval process for getting the injections and also find out how to acquire some Botox. First of all, it's kind of awkward to talk to strangers about how you need botox injections in your vagina. I talked to three people and it seemed that the idea of this was new to all of them. So first I called the main 800 number for my insurance. Good news is that they don't require any type of pre-approval for procedures so I can just get it done and send in the claim. But getting the Botox is more complicated. The medical department didn't really know what to do, so they transferred me to the Pharmacy department. The woman I spoke to in the pharmacy department was really quite perplexed and had no answers so she transferred me to the Mail-Order Pharmacy department. This person told me that the Botox is covered 100% by my medical plan (!) but that I have to pay a $15 copay to my physician. When I told him that my physician didn't take insurance, and therefore did not take copays, he was also perplexed. But he said he'd call the doctor's office and get the prescription and set it in motion. I'm still not sure when the $15 copay comes in, or if it's relevant at all, but I think I'm on my way to getting some Botox sent to me and making an appointment to have it injected into my vagina.

I was on the phone for a long time today. But for your info, if you get the Botox from Dr. G it costs $565, so it's definitely worth it to try going through your insurance first (I think mine will be free - but it's a little unclear). And the procedure costs $560 - close to the typical cost of a visit to Dr. G anyway.

The Botox Decision

2011-03-04T09:41:00.000-08:00

Dr. Goldstein has reached a point with me where he's not 100 percent sure of what to do next. My burning is still around and he normally can eliminate the burning with the estradiol gel. The next step that he would like to take is Botox injections. My husband and I are not sure about this for several reasons:

1. Dr. G isn't guaranteeing anything with botox - it's just his best guess as to what might help.

2. And this is the main concern. Once I get botox, theoretically I should have no pain in the vestibule area for a couple months. This means that during that time is when my husband and I would really need to get serious about sex and penises inside vaginas. We are both concerned that the timing with botox might be very important. What if I get the botox, everything's great physical-wise, but the minute his penis goes inside me I freak out? I think the fact that I've been very down lately, feeling hopeless, and unhorny and undesireous of sexual acts makes both of us worry that it might be too soon to consider numbing the vagina because maybe the emotions won't be able to take it. Does that makes sense?

Our therapist made a good point though. She said that as long as the pain is there, the fear will be there. And as long as the fear is there, it's highly unlikely that I will get any desire back until it is proven over and over and over again that I can have sex without pain. She also said, taking sex totally out of the picture, what if getting botox just made the burning go away and nothing else? Wouldn't it still be worth it? Well, yeah, I guess so.

This is why we need a therapist. My husband and I were thinking about it in a sex/no sex way with the botox. And our ultimate hope in using botox is to be able to have sex pain-free. But what if we still have sexual issues after the botox (inevitably we will because it won't solve all the mental stuff) but the burning is gone? I just can't imagine! It would be so wonderful to not have burning. I could ride a bike, I could sit for more than an hour, my life would be changed in many very small, but significant ways.

And when I think about it that way, I'm inclined to say yes to Botox. I mean, how can it hurt? Will it give me pain free sex? Who knows. If it does give me pain free sex will my emotions be able to handle it and will I get my libido back? Who knows. Will it cure the burning? Who knows. Is it worth a try? I think so.

Any thoughts? Anyone with Botox experience?

A Silver Lining

2011-02-28T09:49:00.000-08:00

Definitely not platinum; not even white gold. But as my mom likes to say, "beggars can't be choosers," so I guess I'll take it. I had a sex dream the other night. It has been many, many months since I've had any sexy-type dreams. And then I had another one last night! I'm hoping that this is a positive sign and that the testosterone might finally be doing something in my body. I used to have sex dreams all the time and then they just stopped (I can't even remember how long it's been). Now if I could just have sexy day dreams that would be awesome.

I also joined a book club recently. I love to read and I decided that it would be nice to read a book and have a group of people with whom to talk to about it (especially since all my friends live in other states and I basically have no one to hang out with except my husband.) I think that the book club has lifted my spirits as well. I think just being able to hang out with some women and talk about books and movies for several hours has been really mentally healing for me. I've met with them twice. I hope that the book club continues to be a relaxing outlet for me to just hang out and be normal for a few hours.

I have been in a deeply dark place for a long while now. I have been feeling a little less sorry for myself in, like, the last few days. I hope it continues. I still try not to think about the hard stuff too much - it just brings me down. If I start thinking about my gigantic fear that I will never want sex again I start to panic. If I think about how my clock is ticking and how much I want to have children I start to panic. If I look around my tiny apartment and really see the massive clutter everywhere I start to panic. But at least now I have something to distract me: books. Books, TV, movies, and sewing projects (and this blog) are definitely my coping mechanisms. I can escape into another world for at least a little while.

And you know what? The sun is shining and the temperature is going up. I don't think any of us can deny that good weather is always a spirit lifter.

Carob as a substitute for chocolate?

2011-02-18T09:35:00.000-08:00

Um, not really. It looks like chocolate. And that's where the similarities end. Whoever decided that carob is a substitute for chocolate has obviously not had chocolate in a long time. As I wrote before, I have been trying the Bladder Friendly Diet to see if it helps with my burning. Chocolate is a no-no in this diet so I bought some carob chips and made oatmeal carob chip cookies to try and get my chocolate fix. Not so much. It's hard to describe what carob tastes like - kind of fruity I think; not chocolaty at all. And another thing - it doesn't melt. I baked the cookies in a 350 degree oven and the carob did not melt. It was disappointing.

The good news (or is it?) is that it seems that the Bladder Friendly Diet really had no effect on me one way or the other. I thought it was working, but then I had all this burning and itching while I was still strictly following the diet. It's good news because I cannot live without chocolate, tomatoes and vinegar. But it would have been nice to pinpoint a specific trigger for the burning. Oh well. It's still a mystery.

In other news I've been pretty down lately. I just feel like my life is stagnant. There is no moving forward. My best friends live far away from me so we usually talk on the phone to keep each other updated on our lives. I've been avoiding calling them because I have nothing to say. Or at least, nothing good to say. And I know they are my friends and they love me and they want to be supportive, but really, who wants to hear my pity party? I don't. Who wants to hear about how I still can't have sex and I still have no desire and my vagina is still burning and it's still all a mystery? They're all getting pregnant and decorating their houses and living normal lives. I don't want to talk to anybody because I don't want to have to answer the question: How are you? What have you been up to lately? How's life? Answers: depressed. nothing. stagnant. Lately whenever I talk to people I do everything I can to steer the conversation towards them. Nothing new over here. Nothing's changed.

The Bladder Friendly Diet

2011-02-03T11:05:00.000-08:00

I've been trying the bladder friendly diet for about a week and a half now. It's going okay. It might be too soon to say whether it's really working, but I will say that I haven't had any burning for several days. I've been keeping a food/burning journal so that I can see any correlations between what foods I eat and how my vagina feels. The last time I reported burning was on Monday, so I've had three days of no burning. Is it the food or just a coincidence? I don't know.

The hardest part for me with this diet is just having to restrict myself. I'm used to just eating whatever I want (usually pretty healthy) and now I have to think about everything. The worst is the fruit and vegetable situation. There are very few fruits I am allowed to eat and although I can eat most vegetables, I have yet to find a good salad dressing that doesn't have any forbidden ingredients in it. I've made two salad dressings - one that was apple based and one that was cottage cheese based - they were both disgusting!

I have cheated a couple times. I ate chocolate one day (because we had International Night at my school and my students wanted me to try what they made - I had to do it!) and I have probably had a few ingredients when going out to eat that were on the NO list. But I've been pretty good. This weekend I will start with adding back in bananas and see how that goes. I'm starving for fruit! I can only eat apples, pears, and blueberries. I'm not a big apple fan, blueberries are not in season and aren't that great, so I've been eating pears...just pears. I really hope that I am not sensitive to bananas. After that I'll add something else - not sure what yet.

I'm hoping that maybe there are just a few foods that cause sensitivity and that eventually I can add most of the foods back in. It's just too restrictive for a food lover like me to do this diet forever. It's impressive that I've lasted this long (I know that's sad, it's been less than 2 weeks. But I love food!).

I'll try to keep you updated on how the diet goes. So far so good in the burning department, but I feel seriously deprived of fruit and chocolate!

I can't think of a good title...

2011-01-21T09:39:00.000-08:00

It's been over a month since I've written here. I've had plenty to write about, but I just haven't had the energy to do it. I've been feeling pretty down lately. My vagina started burning again after I was doing so well, which has been really discouraging. I've regressed not only physically, but mentally. We were making progress with kissing and naked cuddling and it's like a switch went off in my brain and I have no desire to do any of those things.

My job is very stressful and getting worse. I teach in an inner-city middle school and my students this year are just crazy. Every day I have to deal with kids screaming, running around the room, throwing things at each other, cussing each other out, having "shut up" fights (they tell each other to shut up and it keeps going back and forth and getting louder and louder). I leave work every day just completely drained. They say that your first year of teaching is the hardest, but that is not the case for me. This is my third year and it's definitely been the hardest.

So after an exhausting day at work, then I'm supposed to go home and do my dilator exercises and do my stretching and cook dinner and get ready for the next day and somehow find the desire to make out with my husband. It's all just too much. And it kills me that making out with my husband isn't a stress reliever, isn't something that I want to do but is just another thing I have to cross off my list.

With all that said, I saw Dr. Goldstein again yesterday. I still have burning, which is why I made the appointment, but that's not all. It turns out from my hormone test that the testosterone cream basically did nothing. My testosterone hasn't really gone up at all even though I went through 2 prescriptions-worth of it. That is both discouraging and perhaps a good thing. It's discouraging that my body didn't absorb any of it like it should have. However, that means that maybe there's still a chance of my energy and libido increasing when I finally do get my testosterone where it should be. This time Dr. G prescribed the stuff that men use - Andro Gel (it's the stuff that cyclists use to get better/faster and then get in trouble with the Tour de France). So it's stronger and hopefully it will work. I guess if I start growing chest hair and my voice gets deeper we'll know it's working.

Another disheartening thing we found at the doctor was that my pelvic floor muscles are worse. Now that is partially because of all the burning - I haven't been doing my dilators like I should. Now my muscles from 3-9 on the pelvic clock are very tight. He also said that it's only the artificial muscles close to the opening, not the deeper muscles. So he wants me back on the Valium suppositories (I felt nothing with these, but he still thinks they might help with PT) and he wants me to be more aggressive with my PT and just push through it if it's burning. He also mentioned that I could get Botox injections to help speed up PT. We are going to consider it. It is expensive, but not so expensive that we won't do it. But I think we're going to see how this other stuff works first before doing the Botox.

I am also still sensitive right where my urethra is. Dr G thinks I might have a mild case of Interstitial Cystitis. He said there is a medication for it, but that he is hesitant to prescribe it because the side effect is depression (and I don't need any more of that). So I have decided that I am going to try a bladder-friendly diet for a few weeks and see if that makes a difference. It will be hard because I can't drink green tea or eat chocolate or bananas (the tea and bananas are a daily thing for me and the chocolate is not far behind!). But I'm going to try it and eventually I can work those foods back in one at a time and if they don't bother me I can continue eating them. Since we aren't sure about whether I have Interstitial Cystitis and if I do have it, it's a mild case, I figure I should try changing my diet before taking medications or doing other more expensive and invasive treatments.

With all the physical issues I have nothing worries me more than the mental stuff. I still feel hopeful that we can fix the physical stuff, but I'm terrified that I will never feel horny again. I'm terrified that I will never feel like a normal person feels. My husband described it as Post Traumatic Stress Disorder the other day and I think that's a pretty good way to describe it. It's like anything remotely to do with sex (like kissing) just makes me automatically put up a road block and want nothing to do with it.

I know I can loosen up my pelvic muscles, I know I can get rid of this burning, but can I ever convince myself that I want to have sex?

Where to start?

2010-12-17T10:36:00.000-08:00

I have been so stressed and so jumbled in the head lately that I really don't know where to begin with this entry.

My last entry described my crazy reaction to Prozac of which I am still feeling the effects. I still have the rash on my stomach and back and for about a week and a half I had the worst entire-skull headaches of my life. I mean, my temples, forehead, sinuses, chin, jaw, teeth, cheekbones, everything throbbed. I actually took a sick day on Tuesday because I was awake all night with a throbbing skull (and that was after taking 2 oxycodones, which hardly did anything). The headaches are finally subsiding, although still lingering a bit. My doctor said it would take a few weeks for the Prozac to be fully out of my system.

Another effect of the Prozac was extreme anxiety, nervousness, and figitiness. In the mornings I would feel like I did the first week of my first year of teaching - just complete terror and nervousness - but without a specific source. It was awful. And it brought me down emotionally. I've had many moments of being in puddles of tears over something and feeling extra sorry for myself.

I can't blame it all on Prozac. The other big issue is that my vagina burns again. I am so discouraged and nobody knows what to do. I have an appointment with Dr. Goldstein in January, but even he's not sure what to do next. And my physical therapist is trying different things but I don't think the latest is working. She wants me to put in a smallish dilator and squeeze and release until I can squeeze no more. I've never actually done it for that long because I could be there for hours. I could squeeze and release all day. But I have noticed that every time I do it, my vagina is sore and extra burny for the rest of that day and the following day. I also have shooting throbs of pain here and there. I don't think I'll be doing that exercise anymore. I just can't see any benefit.

Our friends just had their second baby in less than a year. I am very happy for them (and frightened for them having two kids under the age of 1), but it reminds me of my ever-increasing and impossible-to-fulfill dream of having children. I am so far removed from the possibility of getting pregnant and it makes me cry as I sit here right now typing this. I know that there are other ways to get pregnant, but the thought of having to get pregnant using a petri dish is just too much to bear. Plus, why on earth would we want to have kids now when our sex life (if you can call it that) is so screwed up? When every waking hour is spent going to appointments, doing dilator exercises, going to work, reading about vagina problems, going to the therapist, and taking lots of baths to soothe my burning vagina? It doesn't even make sense to try and bring a kid into all that. But the fact remains that I want to have children. I know I still have time. I'm only 28. But when my vagina is still burning I can't even picture a time when we would even be able to try to get pregnant.

My life, and my husband and I's life together, is passing us by while we try to fix this thing. We live in a small apartment which we keep renewing the lease for because we can't make any kind of commitment to buying a house right now. Why? Because we can't commit to living here forever. Why? Because we had dreams of doing the Peace Corps and living in another country before settling down to buy a house somewhere. But that dream is over. We can't do the Peace Corps because of me. Yes it is possible to live in another country and find the health care that I need, but honestly, that is terrifying. My husband wants a different career, but he can't even really start to think about what that might be because my vagina holds us here. It's like we're on a plane that is trying to land but can't, and just continues to circle the runway. We aren't going anywhere exciting, but we also can't get out and move on with our lives. We're both stuck. We want more for ourselves and for each other, but we can't seem to find the motivation to even try. The vagina is holding us here in this apartment, in this city, in this life. It's not a bad place to live, but we should choose it because we want it, not because it's the easiest thing for all my problems.

Prozac: what are you doing to me?

2010-12-06T09:04:00.000-08:00

I've been taking Prozac for a few weeks now. I thought it was working, but last week my psychiatrist upped the dose from 20 to 30 mg. The first day I took the higher dose I had a massive all day and night headache. Then the second day I took 30 mg I had the headache and I was highly agitated, feeling very nervous, very anxious and jittery. I also have little red spots on my stomach and back that have been coming for the last few weeks, but I'm just now making the connection to the Prozac (at least I think so). I've gone back down to 20mg and called my doctor, but I haven't been able to speak to him yet. I'm still feeling slightly nervous and jittery, still have a little headache and the red spots are still there. Has anyone out there ever had these types of reactions to Prozac?

I don't know what we'll try next. It's exhausting trying to find the right medication to make me less anxious - and in the meantime the process making me MORE anxious!

What the hell is this?

2010-11-24T07:21:00.000-08:00

Catchy title, right? Well here's what happened. After an hour and a half session with our therapist, I stood up from the couch and instantly had a sharp pain in my clitoris. I have read many other blogs that speak about clitoral pain, but I've never myself had it. What the hell? So I had this sharp pain for several hours after that. I took a hot bath which usually helps my vagina pain a bit, and while I was in the bath I felt around and pushed on different spots and found that if I pushed on the bottom part of my clitoris there was a sharp pain. Also, the friction of walking around irritated it. When I went to bed it was still hurting, but I woke up this morning and it's gone. What is this?! I am so hoping that it was just an anomaly. I don't need to add clitoris problems to my already long list. Does anyone have any insight about this problem?

So far all my pain has been internal - why oh why must there be another component? PLEASE NO!!

PH and Vaginal Burning

2010-11-16T09:16:00.000-08:00

I've mentioned before that I feel like my vagina burns more when I'm dehydrated. Well, I recently read an article that my PT gave me about PH and here's the very short version of what it said: When your body is dehydrated, your PH becomes more acidic - drinking water makes your PH more alkaline. Your vagina prefers to be more alkaline, therefore, drinking water really does help in reducing burning. I knew it just from personal observation, but it's nice to read that I actually was right and that there's some science to back it up. So ladies, drink up! It will make your vagina more alkaline and in turn reduce your burning (hopefully).

PS - It's ironic that I'm writing this post on a day that I forgot my water bottle and I am parched! I've had to run to the water fountain in between my classes just to get a sip! Hopefully my vagina won't punish me later.

My FEELINGS

2010-11-09T08:54:00.000-08:00

My husband mentioned to me recently that my last few posts have been very straightforward and informational, but that I haven't expressed many of the feelings that I felt during the doctors' appointments. And expressing and understanding my feelings about it all is a crucial part of the emotional part of my healing process. So here I will talk about my feelings!

I think part of the reason I didn't mention feelings in my Goldstein Visit #3 post was because there was so much information to get across and I really hadn't processed it all emotions-wise. What I didn't mention about that visit is that when Dr. G was examining me and poking at the urethral spot that hurts, I started crying. I wasn't crying from the pain and I knew that at the time, but I also wasn't sure why exactly I was crying. As we've discovered, it often takes me several weeks of reflection to realize why I was crying two weeks ago! Well I've figured it out. The tears had been building all day and they finally came out on the examining table - probably at that moment because I was in such a vulnerable position. But I realize now that I had been worrying all day about the fact that I had a NEW problem. I knew that the tissues were healing, but I had this new pain in a specific spot and it was disheartening. Before I even went in there I knew that this urethral spot was a different issue. When I first saw Dr. G in April he said I'd be having pain-free sex by the end of this year. I knew then not to get my hopes up too high, but I did hope that he was right. However, he wasn't. This doesn't mean that I blame him or don't think he's a good doctor. He has helped me tremendously and he continues to help me, but it's very discouraging to know that I'm not fixed, that I have another issue to tackle now. Was this pain always there or did it just start? I think we might never know. It may have always been there, but the other issue was so much more painful that the urethral pain took a back seat; or maybe it just came about in the last couple months. It doesn't really matter; the tears were flowing because I knew that my problems were not solved. I knew that I wouldn't be having sex by the end of this year.

My vagina continues to burn and that is discouraging. I don't know how to make it stop and it is also affecting the progress that my husband and I are making together. I don't want him touching my vagina when it's burning. And we were getting close to actually using the penis! It feels like a step back so I'm discouraged.

I just hope that the Valium suppositories will help relax my pelvic floor, and in turn make the burning cease. If not, I guess I'll have to take another trip to D.C. and possibly to a urologist.

I have not given up, and I never will. I do still have faith that this issue will be solved. I do still have faith that I will be able to have sex with my husband and that I will WANT to have sex with my husband.

Recently someone wrote a comment on a very old post that I wrote about vaginismus. Among many offensive things, he said that I should become a nun, or at least celibate, because sexual dysfunction is God's way of enforcing population control. Well, at first I was pissed and offended by his remarks; then I was just amused at how ridiculous they were. I am hesitant to even mention his comments because I don't want to give him the attention that he so obviously craves; nor do I want his negativity to infect my blog. But I'm going to put a positive spin on it. I've had a few days to reflect on what this guy said and although his comments were offensive and ludicrous, they have actually given me more hope. Because it has made me realize that I never once considered giving up and just being celibate. Not once. (And of course for completely different reasons have never considered being a nun either). That has never entered my mind as an option. I have my days where I feel discouraged and want to quit all the doctors and all the exercises, but not ONCE have I ever considered giving up. So his comments made me realize that I am strong and that I am a fighter. I'm not going to give up ever. I will continue to fight this until it is resolved.

So, I had a revelation, a realization that I am stronger than I have given myself credit for. I mentioned the above comments to give context to that revelation, and for no other reason. I hope to continue using this blog as an honest place for me to vent my feelings as well as a place for women to go to ask questions and answer questions; and a place for women (and husbands, boyfriends, or partners) to feel like they are not alone.

Using Cloth Pads

2010-11-06T11:30:00.000-07:00


Overnight Muffies

It's been several months since I started using cloth pads so I wanted to let you know how it's going. I like it in general, although there are some frustrations. The type of pad really makes a difference comfort-wise. My favorite pads are made by Pleat and they are the Overnight Muffies. I don't just use them overnight - they are longer and I like them better than the daytime ones (Regular Muffies) because they offer more coverage. I also have some pads that I only wear at night because they were a good deal, but not very comfortable. They feel like a diaper, but they do serve a purpose because they are very long and work well for sleeping. If you are looking for a less expensive night time only pad then I will recommend the Mama Moon Pads by Cre8tiveMama, but like I said, I only use them at night because I find them uncomfortable.


Mama Moon Pads

Right now I have 8 night time pads, 10 Overnight Muffies, and 5 Regular Muffies. And with the muffies I use a little extender snap that I acquired somehow because they aren't quite wide enough for my underwear. During a typical period, I have to do laundry about halfway through to have enough pads to last and sometimes I still have to supplement with disposable pads. I think if I wanted to get through the whole period without using any disposable pads I would probably buy 10 more Overnight Muffies - just to give you an idea of how many you need to get through a period. I could do more than one load of laundry, but I don't like to waste water, so if I don't have clothes to wash with them, I'm not going to do a load just for pads.

And that brings me to my one issue with these pads. I don't like stains, and gosh darnit I cannot get the stains out of some of these pads! I've tried pre-soaking them in oxyclean water, vinegar water, baking soda water, and nothing has worked to get all the stains out. They aren't horrible, but I wish I could get them out. Also, it seems like they are getting a bit dingy. Is it the way I pre-soak or wash them? Any advice? I wash them with my clothes on a regular cycle with regular unscented detergent and I lay them on a towel to air dry. Should I try another method?

Overall I like the cloth pads. My vagina can breathe more and I'm not being as wasteful. And they're pretty :)

Test Results Are In

2010-11-05T05:34:00.000-07:00

I've had lots of tests in the last month and have neglected to update you on their results.

I mentioned that I was going to see my regular doctor to be tested for hypothyroidism because I have so many of the symptoms. Well, I have no thyroid issues. So that's good. I mean, in one way it would help explain my fatigue, but I suppose I'd rather not have a thyroid issue that has to be treated for the rest of my life. She also tested me for the Epstein Barr virus that I had when I was younger (due to getting Mono when I was 2) and caused my Chronic Fatigue, and the test showed that the EBV is no longer active in my system. I'm not sure what this means exactly, because I'm still tired, but I no longer have an active EBV in my body. Yay?

So why am I still tired? Good question. No answer really. My doctor told me that that might just be my life; that it might be my normal. Well, I told her that was unacceptable - it's not okay for me to be this tired all the time. She said the normal stuff - some people need 9 hours of sleep a night (me included) and I try, but it's hard to get that much sleep when I have to wake up at 5:30am. She also said I need to exercise. Well, as I've said here before and I said to her, how can I exercise when I'm totally exhausted? It's a never-ending cycle. But whatever. Hopefully the other things I'm doing will help with the fatigue.

My hormone results are back and they are still low. Dr. G wants me to use a systemic testosterone cream for 3 weeks every day and then 3 times per week until I don't know. Even though my estrogen is still low, he says I'm out of the menopause low and he wants me to stop the Estradiol for now. I think he's hoping that my own body will pick up the pace after getting a jump start. He also prescribed the Diazapam suppositories to help relax my pelvic floor muscles. I will be getting those today so I'll let you know how they go. I guess I'll do them anally like he recommended because my vagina is so sensitive - but I'm not looking forward to it! He can't explain the burning that has returned, but he's hoping that the suppositories will help and I've been trying to do more yoga which seems to help too. I really think that stretching is key - it does make a difference.

My psychiatrist has lowered my Clonazapam to .5mg in the morning and .5mg at night and added 10mg of Prozac in the morning. We'll see. This will supposedly help with the fatigue, but it takes longer to get into the system. I've been taking the Prozac for about 1.5 weeks and I'm still tired, but he said it could take a month. It also has some scary side effects, but so far all I've noticed is dry mouth. If it gives me more energy, I'll take dry mouth.

So the Prozac and testosterone are both supposed to help me in the energy department. I sure hope so. I'm so tired. I want to exercise, but I have no energy. I'm hoping for the best with these drugs. We'll see how it goes.

Goldstein Visit #3

2010-10-22T09:28:00.000-07:00

Well, I don't even know where to start. There is a lot of information to share. It helps me to break it into categories so that's what I'll do:

The Vestibule:

It appears that my vestibule is pretty well healed. I didn't really have much pain with the Q-tip test, so that's good news. Dr. G said he may take me off of the Estradiol, but he wants to learn the results of my hormone test beforehand. I would be shocked if my estrogen is where is should be, but according to my vagina - Dr. G thinks I have some good estrogen down there.

Hormones:

I'll get the results back next week, but like I said, I just don't think there's any way my hormones are where they should be. Dr. G did prescribe Testosterone gel that I am supposed to apply daily to my legs. He also said that I should rotate the spot of application because it can make me hairy! (yikes!) He said it also might cause more acne. But he also said that it could help with my libido and give me more energy, so that is a trade I'm willing to make. Depending on the results of my thyroid test, we might just stick with the testosterone gel for now before trying other methods to increase my energy. He said he doesn't want me trying too many new things at once - and I agree.

The new (or is it?) problem:
Lately during PT, I've been feeling pain at the 12 o'clock spot, but not in the pelvic muscles - it's actually where my urethra is. I told Dr. G about this and he went in there, and it was, in fact, quite painful. He's not sure what to do about this, but he mentioned seeing a urologist (great, another doctor). However, like I said earlier, he doesn't want me doing too many new things at once, so the urologist idea is tabled for the moment. This problem actually made Dr. G question himself - he said "is this new or did I miss it the last time?". I don't know the answer to that question either. Maybe it was there, but the other problems were more prominent. I don't know. But it's definitely there now.

The burning is back:
My vagina has been burning on and off for about the last two weeks. Dr. G actually has no answer! He says from a visual standpoint, everything looks burn-free. He actually admitted that he wasn't sure what to do about that. In a way, I'm disappointed that he didn't have a solution for me, but it also makes me trust him more. It's hard to trust someone who thinks he knows everything, and now Dr. G has proven that he doesn't think that - that there are things he doesn't know. And to me, that makes him a better doctor. With that said, I hope he/we can figure out what all the burning is about.

The discharge:
I told Dr. G how I've been having rivers of discharge for the last three weeks and he said, "yes! Your ovaries are working!". Apparently, normal women have a lot of discharge and it's nothing to worry about (however it is quite bothersome). But it made him very hopeful that my estrogen levels have risen because now my ovaries are doing their job. In his words, "most women are dry as the Sahara because they are taking birth control. This is not normal". So okay, my leaky vagina is normal. Yes! One point for me! I used the word normal in the same sentence as vagina!

Estradiol info:
I found out exactly what the base was in my new Estradiol gel - it's Acid Mantlebase - Dr. G says that it can be less irritating for some people because it has lipids to hold in moisture and act as a barrier and that it has an emollient affect. My original Estradiol base was Methyl Cellulose, which is basically water, which is why he usually prescribes it because it tends to be less irritating, but I needed something more.

Anxiety Meds:
I plan to talk to my psych about changing from Clonazepam to something else because I'm just too tired. Dr. G said that meds like Prozac and the like do have a libido side effects, but that it would be okay to try them for now if I need to get my anxiety down. He also wants to consider a Diazapam suppository, which is basically Valium to help relax my pelvic floor. But we're waiting on that as well. Not too much at once. He said anal suppository and I was like, "what what?! You want me to put it in my butt?" I do not want to put things in my butt. But he said that he usually says to put it in the vagina, but since mine is so sensitive he worries that there will be a negative reaction. So, I might have to put a suppository up my butt. I'll do it, but I won't like it. However, if it helps, I'll like the result.

Well, I think that's all. We really did a lot yesterday and my brain was so fried I couldn't write this entry last night. So I'm writing it now at work instead of doing work :). Please ask any questions. It's a lot of information.

Well, the ball is rolling, but probably not fast

2010-10-20T09:06:00.000-07:00

I went to the doctor yesterday to get tested for hypothyroidism, among other fatigue-causing illnesses. She doesn't seem to think that I have it, and I probably don't, but we did blood work, which I will get back next week. If it's not that, then we'll just start a guessing game I suppose. I just want to be normal, and you all may not know this because this blog is about my vagina, but I've been tired my whole life - more tired than other people. I go to bed by 9pm at the latest every night and I'm still exhausted. I was diagnosed with Chronic Fatigue Syndrome when I was a teenager, but knowing that really doesn't help me be less tired. All they say is "get more sleep". Okay, well if I go to bed any earlier, I won't be able to fall asleep, plus I won't get anything done! It's frustrating. Hopefully we'll figure out something eventually. More sleep is not going to help - I already get as much sleep as I can and I'm still tired.

I'm going to see Goldstein tomorrow so I'll post an update soon about that.

I'm Still Leaking!

2010-10-14T09:33:00.000-07:00

It's been two weeks now and I still have copious amounts of discharge! It doesn't smell funny; it's not a weird color or texture - it's just flowing! What is up with this? It's just down right annoying!

Post-Period Discharge, Anyone?

2010-10-07T09:04:00.000-07:00

Okay so usually I am not as observant as I really should be about when I have discharge and when I don't. We've all had it since we were 12 or so, right? But I have particularly noticed this time around that I have a lot of discharge, and it started right after my period ended on Friday - since then: discharge city. Does anyone else experience this post-period discharge? Should I be concerned or just go with it - I know it's normal to have discharge. I don't know - I guess I just want to hear from you about your discharge patterns. Wow, what a weird thing to say! But it's true, I want to know your discharge habits!

Which Estradiol Gel?

2010-10-04T17:26:00.000-07:00

Well who knew there were so many choices?

Dr. Goldstein prescribed Estradiol gel to me in April. As I've said before, the gel at first was very irritating. Over time I got used to it more, but it still irritated me sometimes. At this point my gel was 0.03% estradiol and 0.1% testosterone in a cellulose base. I started reading on other blogs and on my vaginismus yahoo group that some people have Estradiol gel with an Emu oil base. I called Dr. G. to find out more about this. His office called their pharmacy and the pharmacist explained that many people find the emu oil to be more soothing, but not necessarily for the right reasons. It turns out that the emu oil absorbs more of the estrogen and testosterone, making less of it actually absorb into your skin, making it less irritating because it's the hormones that are irritating in the first place. So I didn't want to go with emu oil because I want as many hormones as possible getting into my body. They did have one other suggestion - to use the same ratio of estrogen and testosterone in a different base - I wish I could tell you exactly what the base is, but on the bottle all it says is "ACID MA# 100". I have no idea what that means exactly, but the word "acid" sure is scary. However, I do like this version better. It is less irritating and thicker. I still get irritated sometimes, but it's less than with the cellulose-based Estradiol.

So there's the rundown on Estradiol options. Please let me know if you have any questions. When I go see Dr. G. on October 21, I'll find out exactly what that "acid" base is.

It's been over a month - so I guess there's lot to say

2010-10-02T05:28:00.000-07:00

I think I'll break it down into categories; I'm organized and anal like that:

Work:
Well the biggest reason that I haven't written anything in a while is because I started back at work on August 30. And I've been completely exhausted and had way too much to do since then. When I come home, I just sit in a post-crazy-kids coma I suppose - nothing else left to give blog wise. I actually have pretty good students this year, but some of my classes are so BIG! It's hard not to have drama when all the students are smashed up next to each other, plus we're talking middle school here so there's ALWAYS drama. I only have one class that really makes me stressed - they are 6th graders and the entire 90 minutes they just want to get into yelling matches and say things about each others' mamas and stuff like that. My psychiatrist told me to take one of those "in the moment" pills before that class. I did it once and it did seem to help a bit. I've been trying new stuff this year at work with my students - as a teacher I try to add new things to make myself a better teacher every year. But this new stuff is eating up my time. I literally have no time to eat lunch. During my planning period I scarf down an energy bar while doing other work. But I like my new changes so I guess I'll keep on scarfing those energy bars - any suggestions for one-handed eating would be great :).

Anxiety:
My psych. has raised my Clonazepam dosage to 1 mg in the morning and 1.5 at night. It's so hard to say whether it's working or not. Going back to work increases my stress level significantly, so it's hard to gauge the effectiveness of the drug. I guess we'll just keep experimenting.

Fatigue:
I am tired. All the time. Sometimes I'm so tired that I just lay on the couch and don't even want to get up to pee. A side-effect of Clonazepam is fatigue, but I didn't feel that way until I started back at work. Honestly, it's probably a combination of the two, but I am just so tired - and that's affecting my progress with the vagina situation. It's hard to have sexy time with my husband when I'm exhausted and have absolutely no desire to even put any effort toward kissing and "quiet hands". My husband thinks that I may have hypothyroidism, and after reading the symptoms on Web MD, I might have to agree. I have ALL of them minus the yellow skin. So I've made an appointment with my regular doctor to get checked for that. I can't tell you how excited I am for the possibility of adding another thing to my list of problems my body has inflicted on me! Not to mention all the added doctor's appointments and drugs I'll have to take - that's awesome too! I have a student who wants me to tutor him after school - well good luck finding one day where I don't have a doctor's appointment that I have to rush off to.

How I FEEL:
My therapist is always trying to get those 'feelings' words out of me. How do you FEEL? It's a really hard question sometimes. I have a hard time expressing how I feel in words - mostly I express it through tears, but then no one else really knows what the problem is. Well I feel a lot of things. I guess what I feel most of the time is complete exhaustion, but maybe we can't really count that as a real feeling. I do feel hopeful that we're going in the right direction. We've gotten to the point where my husband is actually touching my vagina between the lips (we call it the "quiet finger" - next up: the "whispering finger" - it's going to move around!). These may seem insignificant, but each step is emotional for me.

Sometimes I feel hopeless, but those are just my sad days, and I don't have them too often. I had one yesterday though, so it's ripe in my mind. I had sent out some photos of me and some of my friends at the State Fair. One picture was of my friend's 9 month old baby. One of my other friends (a college friend who is probably my best friend in the world - and I call her a college friend, but actually I've known her since birth - but she and I are part of a group of 5 college friends who are still really close even though we all live in different states) made a comment on that photo and said "I think you're next!". I have told those 4 friends about my situation, and I thought I explained it well enough, but I guess they don't get it. I'm not next. I can't have babies if I can't have sex. Comments like that just hurt me because they remind me of what I can't have. It's hard enough getting questions like "when are you going to have kids" at work from people who have no idea that I have any problems 'down there', but from my best friends? I was visiting my friends a few weekends ago, and two of the other ones were making similar comments to me (one of the 5 has a baby - she got married first, then I got married - so I guess that means I'm next for babies). I guess they just don't get it. Do I have to explain it again? It hurts too much. I was telling my husband about this last night at dinner in a restaurant and I started crying. I usually avoid topics that make me cry if I'm in a restaurant, but I guess I didn't realize how much it really hurt me. The truth is, I do want a baby - I'm almost 28 and I'm starting to get those feelings that women get - those yearnings for a child. But it's impossible right now. And it makes me so sad.

My husband's brother just graduated from college. He mentioned that he might apply to the Peace Corps. If you've read my blog from the beginning, you know that I applied to the Peace Corps and had to withdraw my application because of my vagina. If my brother-in-law goes through with it I will truly be happy for him and wish him a wonderful experience, but it also just makes my heart hurt. It's another reminder of a dream that I cannot fulfill.

Sometimes I feel like life is passing me by - I can't fulfill my most coveted dreams because of my vagina.

A Memoir About Vaginal Pain

2010-09-11T04:22:00.000-07:00

Yes, it does exist. I had never heard of it until looking at Feminists With Female Sexual Dysfunction and seeing a book review about it. The book is called The Camera My Mother Gave Me by Susanna Kaysen. If you want a thorough book review, go to K's blog, because she does a much better job than I would if I tried. I just wanted to reflect on a few things that affected me personally about the book.

What's exciting about it is that it is actually a real personal account of a woman's experience dealing with Vulvodynia(?), (not sure, she had a lot of diagnoses). I never knew a book like this existed. It is hard to read though, so be warned. She's very blunt and doesn't leave out the gory, sad, horrendous details. She describes her many-years-long search of "What is wrong with me?", as so many of us have asked over and over. She sees countless doctors, healers, alternative medicine people, and they all tell her to do something different - usually something that makes her pain worse. The most disturbing thing to me about all the "doctors" she saw is that most of them told her to keep having sex with her boyfriend - that it would help. What the hell?! She had stabbing, horrible pain when she had sex that lasted for days afterward and they thought it would help? It flashed me back to all the incompetent doctors I went to and I could completely understand her frustration.

The hardest parts of the book for me to read were her interactions with her boyfriend. He was completely unsympathetic to her pain and all he cared about was having sex all the time. He would get mad at her that she wasn't trying to fix it (wasn't trying to fix it? she went to at least one doctor appointment a week trying to fix it!). Or he'd be mad because she wasn't doing something that a doctor prescribed - BECAUSE IT MADE THE PAIN WORSE!. He coerced her into having sex or giving him blow jobs even though she had lost all desire (big surprise - pain does not equal more desire). And then he would accuse her of not loving him enough because if he was in pain he would still have sex with her and do anything to make her happy. UGH! It infuriated me! She used words like "cheese grater" to describe her pain when she had sex. Did he REALLY think that if his penis felt like a cheese grater he would still be having sex?

My husband called me as I was on my way home from work the day after I had finished this book. I was telling him about it and I just burst into tears. I told him about this girl's awful boyfriend and how sad it made me. And how it just reinforced my love and appreciation for my own husband's constant support and non-pressure. He doesn't want to have sex with me if it hurts me. That's not a turn-on for him. You'd think that most men would feel that way. I have all these horrible issues - Vestibulodynia, Pelvic Floor Dysfunction, fear of sex; but at least I have a husband who supports me. Not only that, he cheers me on - he lifts me up when I'm going into one of my depressive "I feel broken and useless" kind of moods. He never accuses me of not loving him. He knows the difference between love and sexual desire. He sees my love in all the hard work I do every day to heal my vagina.

This book was a painful read, but my heart swells with love for my wonderful husband when I reflect on it.

Some of you should not read this book - she goes into detail about her boyfriend's terrible behavior and it might be traumatic for you if you've had similar experiences.

But it's exciting to know that there is actually a book out there that tells this story with no sugar-coating. My favorite part about it is that it's real.

Another Sexy Game

2010-08-23T13:44:00.000-07:00

If you're up to date you know that our therapist wanted each of us to find a sexy game online that we could play to increase our intimate times together without having sex. I already wrote about the game I picked, Fun in Bed, so now I'm going to tell you about my husband's pick: A Hot Affair...with your partner. This game had some similarities to the first - cards with different directives, but it was quite different overall. It's a board game that uses cards. There are three different levels - Intimate, Passionate, and Steamy - and you go through each level twice before progressing to the next one. I do not want to do all the typing I did last time so I'm going to put a photo of the directions and hopefully you'll be able to read them.

(Right here you should see a series of photos, but alas, they were too blurry and small for even the most committed of blog readers to make the effort to read; however I will attempt to show you a picture of the board:)

So, there are two players (obviously) and you have a "Go" spot that you start on. The way you decide who goes first is by looking longingly into each other eyes and the last one to blink rolls the dice first. Very cute.

There are different squares on the board that represent actions that you must take when you land on them:

-A heart with a 'T' in it means that you must have a treat

-A plain heart is kind of a wild card and you basically do whatever you want (we did things like tickle, my husband decided to inspect my yellow toenails (and by yellow I mean they were painted yellow), anything you want)

-A martini glass means you take a drink

-A high heel means that you strip off a piece of clothing (we found that we landed on this one more times than items of clothing that we had, so we decided to just keep reversing it; for example, my husband landed on that square when he was naked, so he put his underwear back on - we thought it was a funny twist)

-A heart with devil horns means that you must draw a card and you draw according to what level you are currently on (Intimate, Passionate, Steamy).

Examples of different cards:

Intimate: Hers - "What was the proudest moment in your life? Ask your partner the same question and relive those special times." His - "What does she think of men with tattoos? You may already have some, in which case discuss where the most interesting place for your next one might be. Ouch! You cannot be serious!"

Passionate: Hers - "Pant, Pant. Lick him through his underpants and see what stirs beneath!" His - "Is that your pump, or are you just pleased to see me? Recreate those magical days of love behind the garage. Have a three-minute fumble with deep making out and wandering hands....but no actual sex! Oh, the agony and the ecstasy!"

Steamy: Hers - "Turn yourself into an irresistible ice cream cone and invite him to eat you! Lying down, put the ice cream on your nipples, between your breasts and in your navel." His - "Give Me A Ring. If your partner possesses some 'scrunchies' (things they use for bunching up hair), invite her to put one round the base of your erection so it's tight but comfortable. Leave it there at least for your next two throws of the dice.

Every time you pass go, you pick a Fantasy Card. You read it to yourself and it stands by. You'll pass Go 5-6 times depending on whether you're the winner or not, and every time you get up to 3 Fantasy Cards, you have to let one go. At the end of the game, the winner gets to choose between his/her 2 remaining Fantasy Cards and the couple plays out that fantasy. Now, we are not having sex yet, nor are we emotionally ready for lots of sex-type things, so a lot of these fantasy cards were moot for us at this time, but may be on the table in the future. My husband won and he chose the following Fantasy:

"There was once a beautiful young girl who took a job as a chambermaid at a nearby hotel. She was poor and so low was the pay she was tempted into stealing from hotel rooms. One day, she was caught taking money from a bedside drawer by a customer who had returned unexpectedly to his room during breakfast. He was a handsome man with a kindly face, so the maid begged him not to report her, for she was certain to lose her job. Lifting her skirt to reveal irresistible high-cut black panties, stockings and garter belt, she said she would do anything, anything, to stop the matter going any further. And so the handsome gentleman took her at her word, and laid the matter to rest."

So we did act that out in our own non-intercourse kind of way. It was fun (and funny).

Just to give you an idea of the ultra-kinkiness of this game, I will now quote another Fantasy Card that we did not act out, just for fun:

"Sucking Up To The Boss: Here you can either be the boss, or the staff member (!!) The boss is giving an employee a performance appraisal...using some pretty unorthodox techniques. First, oral communication: the boss walks around to the front of the desk, reveals the managerial genitalia and demands oral satisfaction from the confused employee. Now the boss wants the employee to know what it feels like to be the boss - so places are exchanged and the oral performance is reversed. Next the boss wants to see how the employee performs when their back is against the wall - a real test of character. Standing naked against the wall, the employee must have full intercourse with the boss. Afterwards, the conversation turns to large raises and exciting openings. The appraisal has been a good one."

Whoa.

So that's my basic explanation of this game. A lot of it is too advanced sexually for us at this time, but has a lot of potential for fun in the future. However, I think that we could just play the first two levels and leave out the third level (steamy) for now, as well as pick and choose our Fantasy ending. Also, to truly play this game the way it's intended, you need all kinds of props - drinks, food, sometimes chocolate that you melt to rub over someone's body, ice to rub on the genitalia (?!),etc. We kind of brushed over some of the more time consuming things like that because we weren't really prepared for all that and the game still took about an hour and a half. So you can really make the game whatever you want to make it. Overall, it's a fun game, and the whole point is to spend intimate, sexy time together - mission accomplished. We had a good time, we laughed, and we did lots of sexy things with each other.

Pelvic Yoga

2010-08-21T09:40:00.000-07:00

I just finished doing this DVD call Pelvic Yoga with Kimberlee Bethany Bonura. I am giving it a ringing endorsement! I will recommend this DVD to anyone who is dealing with pelvic pain. I am supposed to be doing yoga for stretching and doing kegels to strengthen my pelvic floor muscles. I was searching on Amazon and I found this DVD. It does just that! It is a regular yoga practice with pelvic exercises mixed in. Kimberlee has 4 different types of pelvic exercises (kegels) that she does:

1. quick flicks

2. 5 second holds

3. 10 second holds

4. elevator (clenching to 1st floor, 2nd, 3rd, then 4th - then going back down the elevator one floor at a time until fully released)

I felt like this DVD was really helpful and it is a serious pelvic floor workout. In fact, if you don't do kegels every day like me, you might not be able to handle the 55 minute session of clenching and unclenching, but that's okay, because there's still a regular yoga practice going on. You can choose how much you want to engage your pelvic muscles and when you feel that you've had enough. Also for me, it's more important to focus on the "relax" than the "clench", so I just keep that in mind when I do this DVD.

My only complaint is that there was way too much Downward Dog (and you know how much I hate downward dog), but in Kimberlee's defense, most general yoga practice does include a lot of Downward Dog (it's actually kind of an essential part of yoga, darn it). But with yoga, you always make it YOUR practice, so I did as much down dog as I could and then went into Child's Pose whenever I couldn't hold that dog anymore.

It was a great yoga practice and I really feel like any of you who are doing PT and lots of kegels would really benefit from this DVD. I promise I do not know Kimberlee and will not be receiving any royalties from this endorsement! I just really enjoyed it.

You know what riles me up?

2010-08-20T18:53:00.000-07:00

That commercial for Seasonique birth control.

"Did you know?"

"Did you know that you don't need a monthly period?"

When that commercial comes on I actually start yelling at the TV saying things like:
Did you know that if you take birth control it will deteriorate your vagina?
Did you know that sex will feel like sand paper?
Did you know that you'll end up dreading and fearing sex?
Did you know that you'll spend thousands of dollars and thousands of hours trying to fix what this birth control will do to you?
Did you know that your self esteem will go down the toilet?
Did you know that you'll see countless doctors, getting more and more discouraged each time as one after the other tells you that there's nothing wrong and maybe you just need a glass of wine?
Did you know?"

They don't put that on the list of side effects.

Learning to Relax

2010-08-20T05:49:00.000-07:00

Along my journey of healing my body and mind, I've found out that I just don't know how to relax. At all. Yeah I can sit in front of the TV for hours so I thought, hey, not only am I relaxed, but I'm often quite lazy. But now I realize that I was never really relaxed sitting on that couch; not completely.

There are two types of relaxation - mental and physical. And frankly, I suck at both. I've been working really hard lately to learn how to relax (and believe me, I'm not lost on the frustrating oxymoron in that statement).

I honestly think that one of the major things in the way of me just making a full recovery and kicking this problem's ass is that I can't relax. My mind is buzzing all the time with to do lists, worries, etc. And my body is always clenched.

Last night I got a massage. My doctor recommended that I get them regularly to RELAX (best doctor prescription ever). I do love massages, but am I relaxed during them? Well, sort of. I try so hard to let my whole body just melt into the table (there's that annoying oxymoron again). But I've noticed something each time I get a massage. I can let my whole body melt into the table, except for two parts - my pelvic muscles (no surprise) and my hands. I am constantly realizing during my hour-long massage that my hands are clenched as are my PC muscles. And I have to consciously let them go over and over again. I also have trouble relaxing my mind. I'm supposed to focus on breathing and focus on whatever muscle the massage therapist is working on at the time. I try, but I inevitably find my mind wandering to all sorts of different things - what's on my to do list tomorrow, which book should I check out from the library next, what should I do with my one week of remaining summer break? I actually started composing this blog entry in my mind during my massage last night! And in between all these thoughts, I'm like, hey! Stop it! You shouldn't be making lists or composing blog entries! You're supposed to be relaxed - 'in the moment'. And then I have to unclench my hands and my vagina once again. And I go through this pattern during the whole massage. I can get my mind "in the moment" for about 5 seconds before it goes off somewhere else. Don't get me wrong, I love getting massages, they feel great. But damn, can't I just let go for one hour once a month?

I've also been doing (or trying to do) yoga more often lately. My PT is a big proponent of yoga because stretching is essential to healing those pelvic floor muscles. The reason I say "trying" to do yoga is that I am the most inflexible person you will ever meet. If I tried to touch my toes, I'd get to about halfway down my shin, and that's on a good day. And let me tell you, when we go into downward dog and the yoga instructor says that this should be a relaxing and recuperative pose, I get quite irked because it is one of the hardest things in yoga for me to do. But I'm trying. I can't do regular yoga, it's too hard - I'm just not bendy enough. But the YMCA does offer one Gentle Yoga class so I go to that every week (I'm the only person there under the age of 60). I've ordered some gentle yoga DVDs to supplement and they're okay. I guess they'll do. I prefer doing it "live". I also ordered a DVD that is called pelvic floor yoga so I'm looking forward to what that might have in store for me. But again, with yoga, my mind is everywhere. You're supposed to be focused on your breathing, in some magical yogic place, but most of the time my mind is jumping and spinning and doing things that my inflexible body could only dream of. There was one time in yoga class - we were in savasana and then 5 minutes later I heard the instructor's voice. I had actually left my mind during those 5 minutes! I don't know where I went, but let me tell you, when I "awoke" it was incredible. I really did feel so relaxed and at peace. I've been trying to get back to that place ever since. And maybe that's the problem. I try so hard to relax that it's impossible.

I'm also taking anti-anxiety meds. I so hope that these will help me relax. That is what they're for, right? We're still in the dosage faze, trying to get me to the right dosage that makes me relaxed but doesn't put me to sleep. I think we're getting closer, but my mind still runs a million miles an hour most of the time. I'm looking forward to having nothing on my mind. Just for a few minutes here and there. Is that possible?

Intimacy Activities

2010-08-15T13:00:00.000-07:00

So at the end of our most recent therapy session, our therapist charged us to each buy a sexy game to play that would be fun and intimate. She also told us to keep our games a secret and not tell each other what we were getting. That was kind of fun because we had no idea what the other person was going to get. And there are a million sex games out there so we didn't have to worry about getting the same one. So I researched online and read some reviews, trying to find a game that didn't focus on actual sex (you know, since we don't do that) and I settled on Fun in Bed. We just played it and it really was fun. I think I made a really good choice.

So here's how it goes. It's a card game that comes with props: "a gentleman's tie, a lady's stocking and a feather to tickle your fancies." There are 6 different types of cards: 1) Kiss Me; 2) Ask Me; 3) Tease Me (green for upper body, purple for lower body); 4) Please Me (black print sets the scene, blue is boy instruction, pink is girl instruction); 5) Surprise Me; 6) Talk to Me.

Here's basically how our game went:

1. Each person picks a Kiss Me card, reads it, and passes it to his/her partner to act out its instructions. We had: "Use the edge of your finger to stroke me from my throat to my jaw line. Delicately cover my Adams Apple area with kisses. Suck on my throat with your vampire bites" and "Ask me to close my eyes. Imagine you are a stranger and not a word has ever passed between us but the sexual energy we are feeling speaks louder than words. Approach and kiss me the way that you kissed me when we first met."

2. Each person picks an Ask Me card. You act out the gesture written in italics and then ask the question/ give a command. We had: "Rub your nose with the tip of their nose. Whisper in my ear something you would like to do to a particular part of my body" and "Trace their jaw line. What do you think about us taking erotic photographs of each other?".

3. Next each person picks a purple Tease Me card, reads the instructions aloud, then passes it to the partner to play out. We had: "Gag me with the tie, put the stocking on my leg and ask me 'Can I do?' questions as you remove items of clothing. You must do the opposite of everything I want (I can only nod or shake my head in response). Touch your favorite parts of my body and ask me your question." and "Tell me to lie down on my front and then tie my feet together. Undo my clothes to reveal my underpants and pull them down slightly to half expose my bottom but don't take them off. Tease my exposed area. Kiss my cheeks enjoying your power. Knead them, squeeze them and then lightly pummel them with your fists as you vary the speed of your actions. Quickly kiss me up and down the back of my legs."

4. Now each person picks a green Tease Me card. We had: "Take off my top and ask me to stretch my arms out wide with my palms facing up. Using the feather trace a line from my wrist to my armpit, over my collarbone to my other hand. Then slither your tongue all the way back along my arm and across my neck and shoulders to where you started, paying special attention to the back of my neck and my inner elbow. Every now and then surprise me with a gentle nip." and "While I am sitting down, take off my clothing to reveal one of my legs. Tie the stocking around my thigh like a garter. Focus your attention on the part of my leg below the garter. Hold up my leg and start to kiss my foot as you run your hands along my calf and inner thigh, squeezing them firmly. Lick and kiss me to behind my knee as you caress me leg. Suck on my inner thigh below the garter and when you reach it, take it off with your teeth growling like a puppy."

5. The next activity involves simultaneous use of Please Me, Talk to Me, and Surprise Me cards. Here's how it went for us: You are acting suspiciously around your partner because you are a spy in a covert mission. Your mission is to find the missing jewel. Tie your partner's arms behind her back and search in her mouth, her hair, her hands, armpits and around her breasts. Then Surprise Me (Nuzzle your way down my body. Pause at my belly button and then move into my panties and inhale my scent. Make small circles with your nose, first on my pubic bone and in my hair, then on my clitoris moving around and around. Vary your pressure.) You will only reveal the whereabouts of the missing jewel by spelling its location on his inner thigh with your tongue. Do it and then Surprise Me (Nuzzle up next to me, while I pick a tune. Hum the tune down my body, starting at my neck. Move your mouth down to my pants and hum the tune over the fabric. Pull off my pants taking my length in your hand and cupping my balls. Take one of my balls in your mouth and start to hum again. Change the pace and tone of your hum for full effect.)

Wow, when I started this I had no idea how much I'd be typing! But I wanted you to have a true idea.
Anyway, the game was fun. It took about 45-60 minutes to do all that. And what I like is that you can adjust it to what you're comfortable with. Like, we did not do any clitoral licking nor did I put his balls in my mouth. We are not there yet. But we made adjustments and just had some intimate fun, which was the whole point. If intimacy is something you are struggling with I would recommend this game. It takes a lot of pressure off because it's just light, sexy fun.

I'm feeling a bit discouraged...

2010-08-13T07:39:00.000-07:00

And hopefully it won't last. But here are the reasons why:

When I do my dilator exercises lately or I go to PT, I leave just feeling like my vagina has taken a beating. I'm sore. And maybe that's okay to be sore when you're working a muscle, but it's still not a pleasant feeling. And I was so confident that I would just fly through PT this time because the atrophy in my vestibule is so much better, but I guess maybe I was a little over confident.
The random burning has returned. It's not nearly what it used to be, but still, I thought I was done with that. So now I have to take breaks from the Estradiol sometimes when the burning gets to be too much, which then makes me think that I am prolonging the healing of the atrophy.
I haven't had my period in two months. Some may say this is a good thing because I haven't had to deal with all the crap that comes with a period, but it makes me feel worried. I have always had a regular period, on or off birth control, until this last time that I went off BC. I stopped taking it in March and ever since then my period has been erratic. You'd think that now that I'm getting my hormones closer to where they should be that my period would be more regular, but so far that is not the case at all. And every now and then I'll feel crampy or moody and think, okay, my period is finally coming, but then it doesn't.
My psychiatrist continues to increase my dosage of Clonazepam (anti-anxiety) because I still haven't felt any decrease in anxiety. I'm up to .5 mg in the morning and 1 mg in the evening. But how am I really supposed to know? It's not going to be some magical change is it? How do I know whether I'm feeling less anxiety now than I did when I started taking the drug 5 weeks ago? Can someone tell me how I'm supposed to feel with less anxiety? I've felt this way for so long I don't know how to recognize non-anxiety.
All of this has also decreased my desire to even try doing intimate things with my husband. We're supposed to do a version of the naked cuddle most days (whether it be full-blown with emotional stretching or just a quicky), but I just haven't been in the mood lately. I think it's just because I've been a bit down lately.

The other day when we did a naked cuddle I just started crying. I couldn't explain why, I couldn't describe my emotions (I'm famous for this in therapy - I'm never able to verbalize how I feel and why the tears flow). It always takes me a while to realize why I was crying several days before. And now after writing all this down I guess I realize that I was crying because of all of the above. I'm just discouraged. I'm hoping that it's just a temporary thing. I know that PT can go up and down - one day it's great and the next it's painful. I guess I'm just ready to be done with all this. I feel like I'm getting so close, but then a PT appointment makes me sore and it feels like a step back. Maybe I'm just putting too much pressure on myself.

I do still have hope.

Wine Makes My Lady Parts Whine

2010-07-30T12:36:00.000-07:00

Has anyone else ever experienced this problem? I'm not a big drinker; I don't really like it that much. But when I do have wine or a mixed drink (can't say about beer cause I think it's gross so I never drink it), my vagina starts to burn. Just a few sips and a minute or two and that's all it takes for my vagina to start burning with small amounts of alcohol. My husband says it must by psychosomatic because how could a sip of wine affect me just a few seconds after I've swallowed it? And I sort of agree, because how could a sip of wine get through my system that quickly?

But then we went to Italy. I had 1-2 glasses of wine almost every night with dinner and it did not make my vagina burn. You might think that that supports the psychosomatic theory because maybe being in a different place made me not think about it so much. But then that last night we were in Italy I had a couple sips of wine and there it was! The burning! So now I'm not so sure it's just all in my head. But I can't figure it out. There must be some ingredient in some wines and not in others that makes my vagina burn. It's not a cheap/expensive thing because we always drink cheap wine, here and in Italy. And it's not an Italian wine thing because I've had wine in America that was imported from Italy. I've had French, Italian, Chilean, Californian, etc. and they all have that effect. Why did all the wines in Italy not make it burn, except for the last one?

Does anyone have a clue about this? So weird.

Back to PT, Back to Dilators

2010-07-27T04:20:00.000-07:00

Well I took a three month hiatus from PT and dilators (doctor's orders) to focus on healing the atrophied tissues in my vestibule. The atrophy is healing quite nicely due to the Estradiol gel. It's not healed all the way, but healed enough that Dr. G. gave the go ahead to start back with PT.

What the EMG readout looks like (flexing versus resting)

During my first 'back at PT' appointment, we did sort of an overview. I was hooked up to the EMG machine to find out my resting PC muscle number and PC strength number. The last time I did this EMG thing, my resting number was 7 (I don't know the units, sorry). The goal is to get it around a 3 so I was pretty far off. Now I'm at a 5. Making progress!

PC Muscles

My PT also did a general internal exam with her finger to check out the situation. She could definitely tell that there was much improvement. It's funny because I didn't do any muscle work in the last 3 months, but just healing those tissues made my muscles relax significantly. I'm so glad I went to the specialist. We could have been going on and on with PT forever and never really solving the problem because the healing had to start with the atrophy, not the muscles.

So here is my homework from PT:

1) I must stretch every day, including legs, back and any stretches that really get into those PT muscles.

2) I'm supposed to stretch with my husband! We are supposed to sit back to back with our legs out (and believe me, just that is a true stretch for both of us since we are the two most inflexible people on earth) and then bend forward towards our toes. Then we're supposed to sit up, put our arms out to the side parallel with the floor and pivot left to right. I admit we have not tried this yet, but we better since my next appointment is tomorrow!

3) About 2 times per week I need to dilate - using small dilator internally to make circles, figure-eights and putting pressure around the pelvic clock at each hour. With a slightly larger dilator, I'm supposed to do a prolonged stretch (leaving it in there for 10ish minutes). Oh, and by the way, the day I don't have to dilate anymore will be a glorious day. I am so tired of that lubey gloppy mess!

4) Kegels. Quick Flicks (clench 3 seconds, release 3 seconds about 10 times per day) and Long Holds (clench 10 seconds and release 10 seconds about 10 times per day).

Lots of homework!

I dilated for the first time yesterday. It was actually a little tough, but I'm hoping that I just need to get back into the swing of things. It was painful to go around the pelvic clock and I think I went too big on the prolonged stretch. I'm going to try a size down next time. My PT told me that there should be no pain and if there is, it's too big. So I'll just work my way up.

I will not be discouraged! I know that this time around will be different. I have a lot of hope and confidence that PT will work this time and that it won't even take that long. I can just feel it. The key was getting those tissues healed.

Positive thoughts - I'm getting better at those these days.

Making Progress

2010-07-09T10:41:00.000-07:00

I had my three month follow-up appointment with Dr. Goldstein yesterday. It went very well. Before I tell you what happened in the appointment I'll tell you the changes that I have personally noticed since starting the Estradiol:

-the overall burning problem has all but disappeared. I occasionally have it, but that's a drastic difference from feeling the burning almost all the time.

-Sitting for long periods of time does not make my vagina burn (there's still a bit of discomfort, but no burning) - I recently went to Italy and the 9 hour plane rides did not cause burning. :)

-My vagina feels more moist in general - it's not a "I'm turned on and my vagina is moist" thing, it's just a general moistness.

So when I had my feet up in the stirrups (they were animal print and furry this time, by the way, and quite comfy) the first thing Dr. G. said was that my vagina visually looked better. He could tell just from looking at it that the tissue was healing.

Then he did the Q-tip test. In almost all the places that I had originally given a grade of 7 out of 10 on the pain scale had NO PAIN AT ALL when he touched them with the q-tip. There was one area that is still sensitive and I know why, because I haven't been putting the estradiol there when it turns out I should have been. But this is really something. I mean, 3 months ago that q-tip made me cringe in pain and yesterday, other than that one spot, there was zero pain. He also tested my muscles and even they were improved even though I haven't been doing PT in the last 3 months. However, it makes perfect sense that when there's less pain, the muscles won't involuntarily clench as much.

They took blood in order to check my hormone status now. I have a feeling that it may be higher, but still not as high as it should be. In Dr. G's words, I did have the hormones of a 45 year old menopausal woman, so I'm hoping to at least be down to a 40 year old pre-menopausal woman at this point (I'm 27 in reality). Dr. G. asked me if I've been feeling any more desire or even had any sexy dreams or anything like that. Unfortunately, no. However last night I had one of those naked in public dreams, does that count?

Dr. G. still doesn't seem like he thinks that there is any need for me to be on anxiety meds, but he said he was okay with it. So I will continue to take those and see if they can just give me the nudge I need to break through my sexual fear.

So I'm supposed to continue using the Estradiol, especially in the spot that I've been missing, and I'm also supposed to start back with PT to get those muscles where they should be. I feel very encouraged and hopeful about all the physical stuff.

And I continue to hope that once the physical stuff is solved, the mental stuff will start loosening up too.

Another doctor added to my Medical Team

2010-07-07T14:11:00.000-07:00

Well I have just returned from my first appointment with a psychiatrist. As I've mentioned before, my therapist really thinks that anti-anxiety medicine might be very helpful for me in just trying to calm myself down during this process. The appointment wasn't as horrible as I was anticipating. I did cry of course, because I can't get through anything without crying. Hey, maybe the drugs will help with that. That would be wonderful. I hate the fact that I can't get through any kind of serious conversation without breaking into tears.

He asked me a lot of questions, had me rate my anxiety level now compared to before I had all these vagina problems, and he determined that I should indeed try out some drugs. He actually wants me to try two! This is like whoa because I've never taken any kind of mind-altering drug before. The first one is called Clonazepam and it's for my general anxiety and it supposed to work more long-term. He also gave me a prescription for another one (forgot the name) that is for anticipatory anxiety. I'm supposed to take this 30 minutes to an hour before I do something that causes me high anxiety, in my case anything sex related. We'll see how helpful this is right now considering that we are nowhere near having any kind of sex, but I do think that it could be really helpful later on when we start trying to have sex.

The doctor seems very confident that the drugs will help lower my anxiety and I'm anxious (ha!) to see how it goes. I've never really been a big fan of the idea of taking any kind of drugs, but it really would be nice not to feel this tension and nervousness all the time. He said it would take about a week for me to feel any difference and I have a follow-up appointment in two weeks. I'm hopeful that it will help me out. I'll let you all know how it goes.

Tomorrow I go back to Dr. Goldstein so I'll also write a post about that soon.

Update

2010-05-20T05:33:00.000-07:00

It's been a while since I wrote anything on this blog. I guess I just wasn't in the mood. But I do have some updates.

I started using the Estradiol gel about 6 weeks ago. I'm supposed to apply it to the vestibule twice a day. At first, I couldn't do it that frequently. It burned and itched like crazy. I was applying it three times on, one time off for a while, but it was still bothering me. Finally, I called the doctor to find out if there was anything I could do to relieve the discomfort. He told me to lower the frequency because the last thing he wanted was for it to become unbearable to me. I asked him about using Vitamin E down there, but he said he really didn't want me putting anything down there except for the Estradiol. So anyway, I don't know what happened, but it's like all I needed to do was talk to him and the irritation basically stopped! It's so weird. But it really doesn't bother me at all now. So I've been applying it twice a day for several weeks now. I guess I just needed to build up a bit of resistance for it.

On a possibly related note, you might remember that I was on my period (blah!) when I saw Dr. Goldstein 6 weeks ago, but the weird thing is that I haven't had my period since! I stopped taking birth control about 9 months ago, but BC or no BC, my period has always been very regular. I can only remember maybe one other time in my life when my period was this late. Is it just a coincidence or could it be related to the fact that I'm putting hormone gel on my vagina? If anything, I would think that the attempt to bring my hormone levels back to normal would help in making my period more regular because that's part of their job. I dont' know, it's weird. I keep feeling like I'm having cramps, so I put in a pad expecting it to start any minute, and then nothing. I don't know what's going on with that. In the back of my mind I'm thinking, okay well I'm going to Italy in a month so maybe if my period can wait another week or two I won't have to deal with it while I'm overseas. But hey, do our periods ever choose the convenient option? I don't think so!

On the emotional side, we are making slow, but steady, progress. We have moved up to having genitals back in the picture. Whoa! It's been a long time. We are doing what the therapist calls the "quiet hand". This is where I place my husband's hand on the vagina area and he just rests it there. No rubbing, no insertion of anything, it just lays there. You wouldn't believe how emotional the first time made me. It seems so simple, but it was really hard for me. I don't know why. I trust my husband completely; I knew he wouldn't go any further than what we agreed, but I was still scared. I have built up some serious fear in my head through all of this. After the first time we tried the quiet hand, I burst into tears. At first I was disappointed that I didn't feel any kind of desirous feelings; even though I knew there was no possible way I would, it was still sad to me that I still can't feel that. But we've done the quiet hand a couple more times and it's much better now. Slow baby steps.

Lastly, Dr. G said that I wouldn't feel any difference with the Estradiol for at least 6 weeks. Well it's been 6 weeks. Sadly I do not feel any more horny at all. I guess that part takes longer. But I will say that my vagina is more moist these days. Not a turned-on kind of moist, but just a general moistness. So I guess that gel is doing something.

Testing Hormones

2010-04-20T17:27:00.000-07:00

I mentioned earlier that my husband read somewhere that the way they test hormones is based on men. We have since found where he read that. It was in Dr. Goldstein's book Reclaiming Desire and here's what it says:

"[...] although total testosterone is important, free testosterone is the most clinically significant value. Unfortunately, measuring a woman's free testosterone is difficult. The tests currently offered by the major commercial laboratories in the United States were developed for men, because men have much higher levels of circulating testosterone. This means that what's considered 'normal' for the tests is based on the testosterone levels of men, not women. Any test loses accuracy when measuring levels far beyond its normal range.

This becomes a more significant issue when you consider that free testosterone accounts for only about 2 percent of a woman's total testosterone. In other words, free testosterone is even further outside the normal range that the tests are designed to measure."

This is an outrage. Why do we even go to gynecologists? Aren't they supposed to be women doctors? I'm not a doctor and even I know that testosterone is a significant hormone for women, even if it comes in small doses. Why has no one taken the steps to makes these tests for women? This explains the huge discrepancy between the test they did at the GYN and the test done at Dr. G's office, why they told me at the GYN that my testosterone was normal and why I've now found out that it's way way low. Now I just have to figure out why the estrogen number was also so inaccurate.

Maybe other doctors ARE idiots...

2010-04-16T08:45:00.000-07:00

I'm just kidding about that; I don't really believe that all other doctors are idiots. But I have had my hormones tested 2 times prior to going to Dr. Goldstein and both times the doctors told me that everything was normal. I've gotten my results back from the blood test that I had at Dr. G's and they tell a very different story. My estradiol is 40 when it should be at 70 and my testosterone is .2 when is should be .6. I'm no scientist but that seems like a huge difference! I know this may sound weird, but I am so relieved that my hormones are, in fact, low. It gives me something to grasp onto as a possible reason for my problems. Not only can I attribute my pain to low hormones, but it might actually have something to do with my non-existent libido as well. This gives me so much hope that I really will be able to feel desire again once I get my hormone levels where they should be.

Finally, I have something concrete that I know can be fixed. If I wasn't at work right now, I would just break down and cry from the relief.

An itchy combination

2010-04-16T05:13:00.000-07:00

I've been using the Estradiol gel for about a week now. I'm supposed to apply it twice a day, but when I first used it, it caused a bit of irritation so I decided to go once a day for a few days to get used to it in a more gradual way and try to prevent an amount of irritation that would make me stop using it. So on Tuesday and Wednesday I felt no itchy/burniness so I decided to start using it twice a day.

Then last night I went to a baseball game. I sat on a hard plastic seat for 4 hours. By itself, that would have caused enough discomfort, but in combination with the Estradiol, man, I am super itchy today! I hope it won't last because I have to use this stuff for 6 months and I really don't want to have an itchy vagina for that long.

One Track Mind

2010-04-08T04:45:00.001-07:00

This picture was the first thing I saw as I was getting on the Metro after my Goldstein appointment. I turned to my husband and said, "what does that look like to you?".

The big appointment.

2010-04-07T15:27:00.000-07:00

Well, after many months of anticipation, my appointment with Dr. Goldstein has come and gone. I have a lot to say, so hopefully this post will not drone on for too long and make you lose interest.

Obviously this is a big deal. After so many years of half-assed treatments or no treatments at all, after a year and half of physical therapy, which has helped but not completely solved the problem, deciding to go see Dr. Goldstein was a big decision (not to mention an expensive one too). I tend not to get too nervous about things ahead of time, but instead reserve all my nervousness for the day of, at which time I get sick to my stomach and just want to lay down I'm so nervous. It wasn't any different this time. I woke up on Tuesday just feeling nauseous. I know it's just a doctor's appointment, but you know, it's hard. It's hard to talk about, especially to someone new, having to explain the whole situation over again. And I also felt some anxiety about what would he say, would he know what's wrong with me, would he be the big jerk that I've read from other people online? So I was nervous.

Let me mention now that on Sunday I went to the bathroom and low and behold, the toilet paper was pink. Great. My period started a week early two days before my huge vagina appointment. I freaked out. I didn't know if the doctor would even still see me or not. I know that doctors aren't bothered by it, but I wasn't sure if this type of appointment needed a blood-free vagina. However, I called and they said it was fine. But man, worst timing ever right? I felt like crap, I had cramps, and I was really tired. Great way to go into my appointment.

So on to the appointment. Basically the appointment was broken into three segments: consultation, exam, consultation.

Pre-exam consultation: We went into Dr. Goldstein's office and started going over the paperwork that we had filled out prior to coming, about my history and my symptoms. Dr. G asked many detailed questions and was very thorough. I thought that we were prepared, but he asked some questions that I really couldn't answer. Like did they look under the microscope when I was being diagnosed for all those yeast infections during college? I'm really not sure. What were the names of all the yeast medications I took? Again, really no idea. When you're in college and you have a yeast infection, the last thing you're thinking is, "I better write this down because in a few years I'm gonna need to know what I took when I inevitably end up at the vagina doctor".

But all in all, the conversation was relatively painless. Don't get me wrong, any time I have to talk about this stuff it's hard and I cry. But it wasn't too bad. And despite the many negative reviews I've read of Dr. G, he was compassionate, straightforward, and nice. He is as arrogant as they come, there's no denying it, but he wasn't rude nor was he a bully, like I feared he might be. He does, however, think that most doctors are complete idiots, which he never specifically said, but it was clear that he thought so. The only thing he really wasn't open to was my psychologist's recommendation that I start taking anti-anxiety medicine. He felt that since I don't have anxiety in my normal life and I only have it related to this subject, that it really wasn't necessary. We'll see how my therapist feels about this.

The exam: The fun part. Well, the first thing I saw when I walked into the room was a camera and a big computer screen and I thought, oh lord, I'm going to have to look at my vagina on that screen. I was right. My vagina was triple sized and we had live action shots of the whole exam. As you can imagine, I was not super excited about this. No one wants to see their vagina on screen. But I have to say, once I got over the initial humiliation of sitting in a room where four people (me, Dr. G, my husband, and nurse) were looking at my vagina on screen, it was actually quite interesting and informative. He very thoroughly touched each part of my vagina with a cotton swab and asked me questions about how it felt and the level of pain. He showed me the different parts of the vagina and explained them.

Then he sprayed my vagina with vinegar. Yes, you read that right. He sprayed my vagina with vinegar! Never in a million years did I ever think that one thing he might do is spray my vagina with the main ingredient in Italian dressing. He did this to check for skin problems - I guess the vinegar makes them show up or something. But I have to say, that vinegar stung like hell. It was like my vagina was on fire. But fortunately it was only for a couple minutes and then he rinsed it with water. Both Dr. G and the nurse said that it was hard to read me because even when I was describing my pain as a 7 out of 10 I really didn't react in an outward way. They called me stoic. I can tell you that I am an expert at stoic. How do you think I had painful sex with my husband for so long without him knowing just how horrible it felt?

Again, during the exam, Dr. G was very sensitive and supportive. He wasn't a jerk and he didn't make inappropriate jokes (another thing I read somewhere else). His nurse was also very supportive. I can tell that her job is basically to make the patient feel as comfortable as possible. I had my husband there with me for support, but that nurse made me feel like if he wasn't there, she would have given the support I needed. She was there right next to me the whole time, she had her hand on my arm and she was very encouraging, both in what she said and how she acted.

Post-exam consultation: A huge difference between this appointment and most doctor appointments that I've had in my life is that there was absolutely no time constraint. We never once felt like we were being rushed and Dr G took time to explain everything thoroughly. At this point, Dr G was ready to give his diagnosis. So here it is, drum role: I have Vestibulodynia! Dr G then went on to say that this really isn't a diagnosis because it's just like saying I have knee pain. The word dynia means pain in Greek, so vestibulodynia means that I have pain in the vestibule (see diagram to find out where the vestibule is). Makes sense. But he went on to tell me what he believes are the causes of this pain. He believes that there are two:

1)Atrophy of the vestibule tissue - most likely caused by the use of birth control pills. As he explained, birth control pills intentionally lower your estrogen and testosterone, but this can have very negative effects on your vagina (it effects everyone differently so it's basically just a coin toss). The vestibule needs these hormones and without them it goes into atrophy, which causes pain. He has prescribed a gel that he wants me to apply to the area for 3-6 months.

2)Pelvic floor dysfunction - tight muscles. This is what I've been working on at PT and I already know a lot about. But Dr G believes that the reason that PT has only worked up to a point is that I really need to treat the atrophy first before treating the muscles, or else a lot of that muscle work will be useless. This makes a lot of sense because my muscles have made great strides over the past 1.5 years, but I'm still not better. So he recommends that I treat the atrophy first with the gel and then in about 3 months start back up with aggressive PT when my vagina is more ready to receive it. He says that I should be able to have pain-free sex by the end of this year. Then he said, "I know that's a long time..." and both my husband and I were like, "dude, it's been years. If you're right, a few more months is really insignificant."

So there it is. There is more to say, but honestly, this post is getting too long, and I hate reading super long posts. My final thoughts are these: Everyone has different experiences and I certainly don't want to discount the women who said that Dr. Goldstein was horrible. Maybe he was horrible to them, but that was not my experience. For me he was empathetic and supportive and my overall feeling when I left there was a positive one. However, I'm not quite ready to shout his name from the rooftops yet either. I have my diagnosis and I have a plan of attack. I'm not going to say how super-awesome he is until that plan works. When I am having mind-blowing and pain-free sex with my husband, then I'll start singing Dr. Goldstein's praises. Not at the same time. First I will have earth-shattering sex, and then later, when my clothes are back on, I will praise Dr. Golstein! Until then, I will continue working really hard and doing whatever I can to heal my vagina.

Phew!

Libido or Sanity?

2010-03-14T15:20:00.000-07:00

About 6 months ago I decided to stop taking birth control in an effort to do anything I can to bring back my libido. I'm not sure that any study has proven that birth control has a direct negative effect on libido, but I do not want to take any chances. Plus, I really don't need to take it considering I haven't even attempted to have sex in almost a year.

So, I think it took a few months for all of the drugs to get out of my system, but in the last couple months I can really feel a difference. Not with libido, with sanity. My last few periods have been pretty tough and I think it's because I'm not taking BC anymore. For the past week I have had a headache and been extremely tired. Today I burst into tears for really no reason and I've just been lethargic the past few days. The cramping actually wasn't so bad during this period, but my last one and the on before it came with probably the worst cramps I've ever had.

It sucks that either way I go, I pay a price. But I'm not willing to go back to BC just yet. If there is any chance that it effects my libido, I will sacrifice a little monthly pain and insanity to hopefully be able to get horny again.

In related news, I just had my first period using only cloth pads. After reading Pearl's entry about cloth pads I decided to try them out in an effort to keep my vagina away from as many potential irritants as possible.

What I like about cloth pads:

-Most importantly, and the reason I will continue to use them, my vagina feels better than with disposable pads. I don't get as itchy and I really do feel like my vagina can "breathe" more.

-they are pretty

-they are environmentally friendly

What I don't like about cloth pads:

-they scrunch my underwear where they snap and it makes me have a sort of wedgie all the time. I got some extender snaps, and they help some, but there's still a bit of wedginess.

-Sitting for long periods of time is uncomfortable in these pads because they are thicker than what I'm used to. It's not the sitting/burning problem I have, but just a discomfort in my butt area.

-they are more high maintenance because of the cleaning process.

Regardless of the down sides, I will continue to use them. My vagina just feels better and that's the most important thing. I can live with the other stuff if they are helping make my vagina feel better. Thanks for the suggestion Pearl!

Lidocaine

2010-03-10T09:29:00.000-08:00

I've been using Lidocaine for about 2 months now and I'm not sure I can tell any difference. My PT is trying to troubleshoot solutions to my burning problem and one thing we're trying is putting Lidocaine in my vagina every night. It's supposed to desensitize the area over time and ultimately relieve the burning (as well as probably set my vagina up for less painful sex in the very far future). But I still get the same amount of burning that I was getting 2 months ago. The other thing is that I know Lidocaine is supposed to be a numbing agent, but my vagina doesn't feel numb at all when I use it. Has anyone else used Lidocaine in this way?

The Naked Cuddle

2010-03-08T09:44:00.000-08:00

In our quest to bring some comfortable intimacy back into our relationship, my husband and I have tried many things. When we first started seeing the psychologist we had to go through a sort of trial and error period before we found what really works for us.

We started trying to bring back intimacy by watching erotic videos, doing massages, blindfolding and tickling with a feather, and playing naked Twister. However, we eventually

discovered that we really weren't advanced enough for this stuff. Watching the erotic videos made me so discouraged because even though they did make me a bit aroused physically, I felt nothing emotionally. I found it so hard to explain, but as women, being turned on is not just about the physical, we have to feel it in our heads too. And I just don't feel it.

The massages, feather, and Twister were all kind of similar in that they were sort of fun, but just weren't exactly what we were looking for. Emotions are so hard to explain, but I guess I still felt some sort of resistance (and sometimes dread) with those things.

Even kissing was off the table at one point. Which reminds me, I should tell you that since the beginning of therapy, touching genitals has been off the table as well. I just can't handle it. It's not that it hurts to be touched there, not physically at least. But it just tears me up inside that being touched there does absolutely nothing for me mentally. It just makes me uncomfortable. We're slowly bringing kissing back in, but so far we don't use much tongue. When I write it out here, it almost doesn't seem to make sense. It's like, well, if you're comfortable kissing without tongue, what's the difference if you just add the tongue in? I don't know! I'm just not ready! It's like I'm a teenager experiencing all of this for the first time. It breaks my heart that I cannot give more, but I just can't. When we first started talking about taking away certain activities I would burst into tears. Even though I felt a huge sense of relief when we decided not to touch genitals, and then later not to kiss certain parts, it also hurt me so much that even something as simple as kissing had to be removed because of me, and that taking it away made me feel relieved. I felt like I wasn't even worthy of being a wife if I couldn't even bring myself to kiss my husband.

So on to the naked cuddle. After many months of trying different things, we have landed on the naked cuddle. It is something that we are both comfortable with and it does not give me that feeling of dread or discomfort. Basically it started with just getting naked and laying there cuddling. Over time we are gradually adding in other activities to the naked cuddle. We started with kissing the arms and we've progressed to stomach, back, chest, neck, and ears (this was over many weeks). So that's where we are now.

My husband is so wonderful with all of this. Sex and other sexual activities really are off the table for him. Obviously he wants those things, but he is fully committed to my healing process. He gets excited for the naked cuddle just like he would if it were sex. We are making slow progress and I want it all to just be fixed, but I have to be patient and celebrate the small steps. I have to keep reminding myself to celebrate the small steps.

It should be easier.

2010-03-04T04:57:00.000-08:00

So if you've been reading my blog you know that I have an appointment to see Dr. Goldstein, but from all the negative things I've been hearing, I've been trying to get an appointment with Dr. Kellogg-Spadt instead. Well, easier said than done.

I called 3 weeks ago to try to make an appointment and ask some questions like how does the 1st appt. typically go, how much does it cost, etc. The woman that I spoke to wouldn't even hear my questions. She said they won't do anything until they see my insurance card. So my husband faxed my insurance card to them the next day.

Waiting. Waiting.

Waiting.

Finally my husband called them the next week after we hadn't heard back from them. Here's how the conversation went:
"Hi, I faxed my wife's insurance information last week and ..."
"Yeah we got it, we'll call you tomorrow, can't help you today."
"Okay...."

Notice how he never even said my name or his name, but she chose to cut him off and said that she did get my info and would call the next day.

Next day - nothing.

My husband called them back the day after that and it turns out they never got the fax. Interesting. So he faxed it again.

Waiting.

Waiting.

Waiting.

Finally I called them the next week and the woman I spoke to said, "Yes we got your info but we haven't looked into it yet. I'll call you back." I think she could hear the annoyance in my voice so I think she got right on it and called me back a few hours later. It turns out that they do not accept my insurance (not their fault, my insurance sucks) and it would cost anywhere between $1,000-$3,000 for the first appointment. I said I wanted to make an appointment anyway. Of course I would love for my insurance to cover it; I'm far from rich, but ultimately I'm going to pay the money no matter what. If that was the only problem, there'd be no problem. This is a priority.

So as she was getting my information, she found out that I live in VA. She said that it would be better to set up a phone consultation. I said no, but what I really wanted to say was, "only if the doctor can examine my vagina through the phone. Otherwise a phone consultation is pretty useless". She asked me how I expected to have a doctor that is so many hours away. I told her that I thought I could go to Dr. Kellogg to get a diagnosis and then do maintenance and follow-up treatments with my own doctor (and a few follow-ups with Dr. Kellogg as well).

No.

She said that I would be expected to go to Dr. Kellogg at least once a week for who knows how long and maybe I should look for a doctor in VA that is covered by my insurance. Really? I never thought of that! Well let me just pull out the phone book and look under Vulvovaginal Disorders! Oh look, there's hundreds of doctors in my area who can tell me what's wrong with my crotch!

Fine. You win. I give up.

Dr. Kellogg may be a great doctor, but I guess I'll never know.

So I'm back to going to Dr. Goldstein. Some people have had good experiences with him, so I'm hoping that I can add myself to that group. My husband will be with me so that gives me encouragement that he won't let Dr. Goldstein bully me around.

Why does it have to be so hard?

It burns today.

2010-03-02T04:53:00.000-08:00

There's no explanation for it. My vagina just burns. I haven't been sitting for long periods of time, I haven't really done anything out of the ordinary. It just burns. And this is why it's so hard to diagnose the problem. I know that sitting causes burning, but sometimes it just burns for no apparent reason. Obviously I will not be trying spinning this week if my vagina already burns for no reason. It's so frustrating.

Book Review: Completely Overcome Vaginismus

2010-02-27T09:03:00.000-08:00

Like many of you I'm sure, I've read tons of books on the subject of vaginal pain and how to treat it. I thought it might be informative to write about these books in case you're in search for some good vaginal reading material. I will start with the latest book I read called Completely Overcome Vaginismus: The Practical Approach to Pain-Free Intercourse.

First I want to say that I really like this book. It is actually a set of two books - Book 1 is the book I read and will be talking about here, and Book 2 is the personal journal and workbook that is made as a companion for Book 1. It uses a 10-step plan and I personally find plans to be much easier when there are well-defined steps. The steps start with being able to properly identify your PC muscle group, learning how to control those muscles, and slowly building to inserting things into the vagina (by things I mean fingers, dilators, tampons, etc). They also include some steps that involve emotions and trying to figure out what events happened in your past that contribute to the involuntary muscle contractions.

Because I've been going to the physical therapist for so long and I see a psychologist every week, I have already done most of these steps, however I still think that this book has some value for me. My personal focus will be on the last few steps, which walk you through the transition from dilator to penis. I had said in an earlier therapy session that even when I am physically ready to have a penis in my vagina, the thought of it is terrifying. How could I go from putting plastic dilators in my vagina and then just one day jumping onto a penis? My therapist assured me that there would be steps in between, but I didn't have a clear idea of what those were until I read this book. There are, in fact, many steps in between dilator and penis and I will be sure to refer to this book when I get to that point.

I am going to especially recommend this book to anyone who, for whatever reason, can't go to a physical therapist. I get most of what this book offers from the PT, but if you don't have insurance or you just can't afford a PT or whatever your reason is, you should know that there are still things that you can be doing to get your body on a healing path. And this book is a much less expensive way of starting physical therapy without actually going to a PT (we're talking $34 for Books 1 & 2 versus thousands).

I will say that the emotional stuff in this book is not enough for me. It might be for you, but I am so screwed up in the head that I need more than a book and some daily affirmations (one thing that the book recommends you do) to get my mind on a randy path. I know that for a lot of you out there, you are ready and horny and can't wait for your vagina to get better so you can get some! For me it's much more complicated and reading 100 books would not give me what I need (hence the reason I see a psychologist every week). But, like I said, I still really like this book and I think it's a valuable read.

Please let me know if you have any questions about this book by replying to this post or emailing me at thegirlwithpaindownthere@gmail.com.

Spinning

2010-02-24T09:59:00.000-08:00

Well I went to the YMCA yesterday and did a cycle class. I tried to be really gentle with the transitions from sitting to standing because that's where I can really make my vagina hurt. It went pretty well during the class and it was good to get back out there and do an exercise that I enjoy. Last night my vagina did burn a bit, and today I have noticed that I've been sitting more gingerly and I have a bit of burning. I think I will try to do spinning once a week and see how that goes. I don't want to over do it, but I also want to do spinning! It's such a good workout. I will have to take it slow and make sure that I'm not causing myself unnecessary pain just so I can get some exercise. That would defeat the purpose I think.

Some Positives

2010-02-22T09:23:00.000-08:00

Okay so mostly I just want to complain and be sad and frustrated about all this, but there are some good things going on so in this post I will focus on those.

Last week my physical therapist told me that I can alternate the days that I do dilator exercises and stretching exercises. This may not seem like a big deal, but it is. That means that I have one less thing that I have to do every day! I am very excited about this and even in the last week I feel more relaxed than I have felt just knowing that when I get home each night I have one less thing on my plate.

My previous post was complaining about exercising. My feelings about exercising haven't changed much, but I do have a little positive exercising news. My wonderful husband, whose perpetual optimism is my lifeline through all this, continues to try and think of ways to make my life easier while I continue to work through all these problems. He has offered to exercise with me (even though he's in great shape and whatever we do really wouldn't be a "workout" for him) and he has tried to make suggestions of things that I can do. So this past weekend we went outside and played tennis! The weather was perfect (about 55 degrees) and I really had a lot of fun. We had so much fun that we actually played on Saturday and Sunday. It was great to get outside on a sunny day and run around a bit. Now that doesn't mean that my work week exercise problem is solved (not at all), but I do feel good that I got off my ass this weekend and exercised.

My husband really wants me to be able to celebrate every step of this process. I have a hard time with this because I just want to be fixed and moving up a dilator size just doesn't seem that exciting to me. But I know he's right so I am trying to focus on the positive and really celebrate each moment.

So here I am: today I am celebrating the fact that my daily routine has been shortened and that I exercised this weekend! It's a start. And I am in a pretty good mood today. I'm sure you know that when you have this problem every day is touch and go. I never know when a bad mood will hit me, or when I'll just feel completely down and defeated. But I also never know when I'll wake up and feel encouraged and positive. Today is a positive day and I'm thankful for it. I'm sending you all virtual positive feelings as well and I hope that you too have some positive days.

Exercise. Blah!!

2010-02-16T10:00:00.000-08:00

Of course my doctors are telling me to exercise. Of course it will help my problem because exercise is magic and it helps all health-related problems. I get it. But I hate it. It's boring. It's tiring. When people say that exercising gives you more energy, I want to punch them. That may be true for some, but it's not for me. When people say words like "endorphins" and "runner's high" I think, "wow, that sounds nice. I wonder what that feels like.". I can work out consistently, 5 days a week for several months and I don't have any extra energy.

Here's what I have to do every day. 1-Go to work, which involves waking up at 5:30 am; 2-do my dilator exercises; 3-do my stretches; 4-do my kegels; 5-make dinner; 6-eat dinner; 7-clean up after dinner; 8-get ready for the next day; 9-take 30-60 minutes to relax. And that doesn't even include the days when I have meetings after work, work to do after work, doctor appointments, physical therapy appointments, and psychologist appointments! And I don't even have kids like a lot of you do.

I'm sorry, but when the hell am I supposed to exercise? And if you tell me that I should be exercising during my 30-60 minutes of relaxation time then I will punch you! Really, when should I fit that in?And another thing. The only exercise that I really enjoy is cycling. It's fun, it's challenging, and hey, guess what? It's like the worst thing you can do if you have vagina problems! Having that hard seat between your legs and jumping up and down really does not help the situation. But it's the only exercise that I like.

I just wanted to vent. It's hard to be a girl.

My vagina is killing my dreams

2010-02-15T09:21:00.000-08:00

When I was a freshman in college, a former Peace Corps volunteer came to one of my classes and told us about her experience volunteering. Ever since then I have wanted to join the Peace Corps. I knew it was a big decision and I did a lot of thinking about it. I also wanted my husband to go with me, so we waited until we got married to talk about applying. Seven years after that first inspiration, my desire to go was even stronger, and we finally took the first steps in applying to the Peace Corps.

We applied in November 2008 and everything was looking great. Our interview went really well and finally in March we heard back that we had been accepted and we even knew what part of the world we would be going to. We were told that we would be leaving in March 2010. I was going to teach English and my husband was going to do something with business. Of course, being "accepted" to the Peace Corps does not mean that you are going to go. Then come the medical and legal evaluations. At the time that I filled out the medical evaluation (which is incredibly in depth and takes about a month) I was actually in remission with my vagina problem (well to be honest, I was more in denial than in remission, but on paper, I was in remission) so my medical part was fine. It took forever, but finally in August we heard back from medical that there were a few things missing. Okay, we went in search of these things. In the meantime, though, we started to really think about my vaginal issues. We started seeing the psychologist and I started going back to the physical therapist because my problem had never really been solved the first time. We were both stressing and worrying about the Peace Corps and our time limit in getting this vagina problem solved, but neither of us said anything for a long time. I think we were both afraid that saying it would make it real and that we would have to make some hard decisions.

Well we finally had to face reality. This problem does not care about my time constraints. This problem does not care that I want to live in another country for 2 years. We finally had to decide that we just could not do the Peace Corps right now because we have got to solve this vagina problem first. It was one of the hardest decisions that I have ever had to deal with. I know that it's the right decision because I certainly don't want my problem to get worse in a country with limited health care, and I know that for our relationship it is a priority to fix this problem. But I am heartbroken. I have been dreaming about the Peace Corps for 8 years and now my dream is over. The time was now. There is no other time. It's not like we can wait a few years and apply again. In a few years we want to have kids, we want to have a house. The time is now. And it's ruined.

I just can't believe that with all the problems my vagina has caused: pain, no sex, no desire to have sex, low self-esteem, frustration, stress - that it still hasn't stopped. Now it's the reason that I cannot fulfill one of my lifetime dreams. I am so devastated and I don't know if I will ever get over it.

My husband and I talk about perhaps still moving to another country once this problem is fixed, and without the constraints of the Peace Corps. We could have kids and still live in another country. But it's not the same. I wanted the developing country experience. I wanted to learn about how people live in poorer countries. I wanted to help people. And even if we did move to another country at some point, it would not be the Peace Corps experience. My husband says that it seems like I don't even want to do that anymore, and I'm not sure I do. It's like my dream has been ruined and there's no way to get it back. Plus, I guess I'm afraid to get my hopes up again. I mean, what if we decide that in 2 years we're going to move to Switzerland? What if in 2 years I'm still struggling with this problem and it's still not a good time to go? I do not want to deal with this heartbreak again.

Bloody Bladder

2010-02-10T14:03:00.000-08:00

I must tell you about what happened several months ago when I was out of town to visit my friends. I had been feeling for a few days like I might be developing a yeast infection. My vagina was burning more than normal. So when I was heading out of town on Friday morning, I stopped at CVS to buy some Monistat. I bought the 3 day ovule, which I've never tried before. Side note: the 1-day dose, ovule or cream, does not work. I know it sucks, but you have to get at least a 3-day dose.

So anyway, I drove about 7 hours to have a girls weekend with all of my college friends. My vagina continued to burn, but I figured it was just a yeast infection. That night, we hung out in a hot tub. I know, those of you who know about yeast infections are screaming, why? Why would you get in a hot tub?! I guess I just wanted to be normal and to enjoy normal things like normal people do.

Before I went to bed that night I inserted the first of the 3-dose ovule to hopefully start killing the yeast. That night was the most painful night that I have ever experienced in my life. My vagina burned like nothing I have ever felt. It was so intense and I hardly got any sleep. I suffered throughout the night just waiting for morning to come; it was like torture. I finally got up around 5:30 (one friend had a baby and was up as well). I told her how much pain I was in and we started looking up what clinics were around that I could go to (remember, I was out of town and unable to call my own doctor, plus it was the weekend). The clinics all opened at 9am so I was planning to wait until then, but the pain continued to get exponentially worse.Then I went to the bathroom and my urine was pink! At this point I completely freaked out. I tearfully told me friends that I was peeing blood and that I could not wait until 9:00 to go to the clinic. My friend took me to the emergency room. By that time my condition had worsened still and the urine sample that I gave them was completely red and mostly blood. It turns out that I had a bladder infection that was so bad that my bladder was actually bleeding. I have had a few bladder infections before, but never ever like this. I've never had blood or this amount of pain before. So anyway, the doctor gave me a prescription for pain pills and antibiotics (the bane of any yeast sufferer's existence). I also demanded a prescription for Diflucan because there is a 100% chance that if I take an antibiotic I will get a yeast infection. I will say now that the fact that I used Monistat had nothing to do with my condition worsening. Monistat normally is very affective. I just self-diagnosed incorrectly and the Monistat was not what I needed, so it would have gotten worse either way.

So of course the ER takes forever, but approximately 4 hours later I was finally on my way back and approximately 1 hour after that my pain was significantly alleviated. However, it was not even close to gone and I was still in a lot of pain and discomfort. All the other times I've had bladder infections, the pain medicine has done the trick, but this time I guess it wasn't quite enough. And I actually went through the 3-day supply of pain pills and was still in significant pain so I asked my doctor for a refill. When I went to refill it, the pharmacy wouldn't do it because I had gotten the prescription too recently before that. I understand that they have to follow strict drug rules so I do not blame them for that, but that night was really painful for me. Luckily it subsided the next day.
I asked the doctor if he knew of any reason why this might happen and he said it was kind of just like a perfect storm. It had already been building when I got in the car for 7 hours of sitting and not drinking enough water, then I got in the hot tub, and on top of all that I'm very susceptible to all "down there" problems. And then the next day I had to drive back another 7 hours. It sucked, but I did try to stay hydrated and just make more stops to use the bathroom.

I'm so glad my friend was with me at the hospital. Obviously my husband was not there because I was out of town, so I was really glad that at least I was with very close and supportive friends. She also brought some much needed humor to the situation my naming my condition "bloody bladder", which really made me laugh.

So, yeast infections, bladder infections (sometimes bloody), pain with intercourse, burning vagina. This is my life. It's always something. Maybe this was just an anomaly, but I find that hard to believe. They have to all be connected, right? It's just a little too coincidental.

Dr. Susan Kellogg Spadt

2010-02-08T09:16:00.001-08:00

Has anyone heard anything about Dr. Kellogg Spadt in Philadelphia? She works for the Pelvic and Sexual Health Institute. Do you know if she takes insurance?

Dr. Andrew Goldstein

2010-02-06T04:17:00.001-08:00

I have made an appointment (or should I say, my husband made an appointment because I'm too emotional to get through those kind of things without breaking down) to see Dr. Goldstein in April. He owns the Center for Vulvovaginal Disorders and has offices in D.C., New York, and Annapolis. Has anyone gone to this doctor or heard anything about him?

All doctors are not created equal.

2010-02-05T09:26:00.000-08:00

I realized that in my original post, I did not mention the drama I went through to find a doctor that actually gave me the time of day. All the yeast infections started when I was in college so I went to the on campus clinic for treatment. I probably saw 5 different doctors in my years at school who treated who knows how many yeast infections. At the time, I guess I just thought that I was susceptible to yeast infections, but I never really thought that there could be something else going on. And neither did any of the doctors I saw. Either they didn't care, all college girls have 4 thousand yeast infections, or they were incompetent. I really don't know.

After college I moved to a new state and went in search of a gynecologist. I didn't know anything about any doctors, being new to the area, but someone recommended a certain practice. I went on their website and read the profiles of all of the doctors in the practice. I decided to go with the doctor who's profile mentioned that she focuses on gynecological issues because I thought maybe she would be more open to dealing with all of my problems. So I went to my appointment, and, of course, burst into tears when explaining how it was painful to have sex. Well guess what her recommendation was? Take 4 Advil before having sex. That's it. No really, that's it. And, surprise surprise, 4 Advil makes absolutely no difference at all in the vagina area! She didn't offer to look into possible treatments or diagnoses. She offered no other help. I felt so defeated that I couldn't even muster the strength to look for another doctor or make any further steps toward fixing my problem for at least a year.

My boyfriend finally said enough is enough. I was suffering too much and I needed to find another doctor. So I tried another doctor in the practice; no good. Then I went to the 3rd doctor, and finally, she cared! She was concerned! She actually did a little research and called me back! Then she told me she was moving away. I was devastated. I had finally found someone who cared and seemed like she was open to investigating until she found an answer. But she did have a recommendation for another doctor in a different practice that she thought I should try.

When I called this doctor, she didn't have any appointments available for new patients for several months, but her physician's assistant was available soon. I was desperate and I wanted an in so I made the appointment with the PA (cue angels singing). I want to cry when I think about how lucky I was that the doctor was booked up! The PA is wonderful! She cares so much and she does outside research talking to other doctors and looking things up. Every time I see her she not only offers new information, but she also offers much needed support. And she is the reason that I even know that pelvic pain physical therapists even exists. She is the one that recommended I start going to PT. Before I met her I'd never even heard of such a thing. She doesn't make me feel stupid for crying and she also doesn't act like she has all the answers. She continues to try and learn more about my problem and she doesn't try to make me feel like it's not a big deal. And she is completely supportive of my desire to see a vaginal pain specialist and has offered to do whatever she can to help that process along. I am so thankful for her. We may not have found a solution yet, but at least I have a doctor who cares and continues to search out new solutions. All of you who have had this issue can understand how wonderful it feels to have this small victory. Thank you Dr. Elizabeth! I can't tell you how much your support means to me!

Other Helpful Blogs

2010-02-04T09:19:00.000-08:00

I've read a few other blogs on the subject. Some of them are more helpful in just being able to know that we are not alone, and others have good suggestions on different topics and problems. These people don't necessarily have the same exact problem as me, but I would say that if you're writing about pain in your vagina, I know that there's something that will help me.

http://www.pudendalpain.blogspot.com/
http://vulvodyniasucks.blogspot.com/
http://natalie-bug.blogspot.com/
http://vulvarvestibulitisrelief.com/
http://vulvarvestibulitis.blogspot.com/
http://feministswithfsd.wordpress.com/
http://myvajayjayisbroken.blogspot.com/

let me know if you all know of any more helpful blogs.

Anxiety medicine?

2010-02-03T07:29:00.001-08:00

We also went to the psychologist last night. Lately we've been talking about how much anxiety I feel surrounding this whole ordeal. I get so upset that it's hard for me to talk and I just break down into a crying mess. The best way to explain it is a feeling of pressure. When I get really upset, I feel like there's all this pressure in my body - my chest, my throat, my head. It just feels like there's something pushing me from the inside out and it just wants to burst. Apparently this is called anxiety.

I was resistant at first when anxiety medicine was mentioned. I don't like the idea of taking a drug that alters my mind; that is scary to me. I also worry about what kind of side effects the drug might have, and wouldn't it be the worst thing ever if this drug had some kind of side effect that made the whole vagina problem worse? But my therapist convinced me that we would talk to the vaginal pain specialist about it before doing anything so that he can make sure to prescribe a drug that does not have those specific side effects. She also talked to me about the fact that it might just help me be able to get through this better. I mean it would be nice not to feel like I'm going to explode from the inside out every time someone tries to talk to me about this problem.

It would be nice to feel a little less worried all the time about what if I never get fixed? What if I can't have children? What if my husband is stuck with me forever because he loves me so he wouldn't leave me, but he'd live a life that is sexually and intimately unfulfilled? It would be nice to feel a little less of all of that. It's a lot for one person to worry about all the time.

So anyway, if the doctor agrees, I am willing to try the anti-anxiety medicine. I'll let you know how it goes.

Nerve Endings

2010-02-03T07:12:00.000-08:00

Yesterday I went to the physical therapist and we were talking about what we can do to solve the mysterious burning problem. She says that there are several nerve endings right around the pelvic floor area. And when I sit for long periods of time, those nerve endings can get irritated and sensitive. So she did what I guess you would call nerve stretching exercises.

The first one she did was to hold my leg up and push on my butt bone in different directions. Then she put a finger in my vagina and pushed the nerves around in different directions. I definitely felt pain while she was doing this, and she apparently was doing the light version because she said she didn't want to exacerbate the problem. Right after I left, I felt a lot of discomfort while I was sitting in the car driving away, but the pain subsided in about 30 minutes. And I didn't really feel any burning the rest of the night. I woke up this morning with no pain, but I have felt a little burning here and there so far today. We'll see how this nerve stretching works, but hey, I'll try anything at this point.

I also got hooked up to the EMG (don't know what that stands for, sorry) machine at my appointment. This machine measures how hard I clench my muscles and how much I'm able to relax them. I had two probes stuck to the inside of my butt cheeks (to measure my pelvic floor muscles), one on my hip, and one on my abdomen.

The abdomen probe was sort of like a control and was supposed to stay at a steady pace to show that I don't flex my abdomen muscles when trying to flex my pelvic floor muscles. I'm happy to report that at least I'm doing that part right. My abdomen muscles stayed very steady.

Apparently the resting number for the pelvic floor should be around a 3 (I can't remember the units, so sorry the number 3 doesn't have much meaning) and the first time I did this, my resting number was 10. This means that even when I was trying to relax my muscles, "relaxed" for them was really quite clenched. This time around my resting number was at 7, so I have made some improvement, however there is more to go. We did some muscle relaxing exercises (basically kegels) and I was able to bring that number down to a 5 in about 5 minutes. So that is encouraging to know that even if I am quite clenched, I do have the ability to make my muscles more relaxed.

For those of you who may have this clenching problem, it really does help to squeeze all those muscles down there for about 5 seconds, then release completely and do a pelvic drop, which is basically beyond release. My PT says it's like an elevator, when you release the muscles it goes down to the ground floor, but when you do a pelvic drop, it goes below the ground floor. Try it, I can really feel what she talks about. Anyway, do the clenching and releasing at least 3 times and your muscles will relax some. And the more you do it every day, the more you will have control over the ability to both squeeze and relax your muscles.

How to Prevent a Yeast Infection

2010-02-02T07:01:00.000-08:00

Being someone who has had to deal with numerous yeast infections over the years, I have a lot of good advice on things you can do to prevent them.

-I use a PH balanced body wash called Very Private to clean "down there". You can order this body wash online. Before I learned of Very Private, I used Dove sensitive skin unscented soap. The key is to use something very gentle and with no fragrance.

-I try to avoid using tampons unless I'm in a swimsuit and I always use fragrance free tampons on those rare occasions. I know some women think that pads (again, fragrance free, of course) are gross, and I agree, it does put all your business right there for you to see, but tampons have been known to increase your chance of getting yeast infections. Plus, when your vagina is as sensitive as mine, it's really quite uncomfortable to have something even as small as a tampon in there.

-I blow dry my whole crotch area on the cool setting of the hair dryer when I get out of the shower. Yeast thrive in a moist environment, so it's important to keep the area as dry as you can.

-I take Probiotic Acidophilus in a pill form every day (you can buy it online or in health food stores) - it is the live bacteria found in yogurt that can fight yeast.

-I also eat yogurt frequently for the live bacteria.

-I take a garlic supplement every day (I recommend a small dosage so you don't end up burping up garlic all day - I take 100mg)

-I only wear 100% cotton underwear.

-No tight pants. Let the girl breathe.

-I drink lots of water. I find that on days when I get a bit dehydrated, that's when my vagina starts to burn more.

-When I do my dilator exercises, I use lubrication that is glycerin free. One of my physical therapists is actually studying the affects of yeast infections on vaginal pain and she says that you absolutely must use a glycerin free lube. Apparently, glycerin can really irritate a sensitive vagina. I use either KY Sensitive Jelly or Slippery Stuff Gel Lubricant.

-I use fragrance free detergent and dryer sheets.

-I have read and heard of several studies that show that oral birth control can be a contributor to both vaginal problems and reduced libido, therefore, I have stopped taking it. I mean, I can't have sex anyway, so what's the point?

All of these things are so second nature to me now that I don't even really think about having to do them anymore. It sounds like a lot, but once you get used to it, it's just normal life. If I think of any more I'll add them in.

I still get yeast infections. I don't know why, the doctors don't know why. But these things above do help, so try them out. If you have any additional suggestions, please leave them as a comment on this post.

The burning problem

2010-02-02T06:51:00.000-08:00

Literally. I have a burning problem. My vagina burns for hours, sometimes days, with really no explanation. I noticed it most when I was out of town for Christmas and spent many hours sitting in cars, sitting in restaurants, sitting in movie theaters. Whenever I sit for long periods of time, especially on hard seats or in seats where I can't move around very much, my vagina starts to burn. Even though I say that it happens mostly when I sit for a long period of time, it also happens at completely random moments (or so far as I can tell) when I haven't been sitting. And there's really no explanation for it. Naturally, I'm paranoid about getting yeast infections, so sometimes I think I have a yeast infection. I'm starting to be able to tell the difference though. I can't explain it, but the burning problem is not the same as a yeast infection.
I told my physical therapist about the burning problem and she has made two suggestions:
1) Put an icepack right on the area kind of like you're icing a pulled muscle, and 2) put lidocaine in my vagina twice a day. Lidocaine is a gel that is supposed to numb the area. At first she wanted me to try soaking a cotton ball in lidocaine and putting that in my vagina. That just did not work for me. It felt like my vagina was being plugged up and I could not stand it. So now I just put it in with my finger. The downside to this is that I have to wear a pantyliner or I'll get gel all over my underwear. The intent of using lidocaine twice a day is more of a long-term goal. It's supposed to make me less sensitive over time, so it's not necessarily supposed to work right when I put it in.

Do these methods work? I don't know. The icepack feels good at the time, but when I take it away, the burning is still there. I haven't been doing the lidocaine for very long, so maybe it's affects have not shown yet, however, it's supposed to be numbing right? Well when it's in there, I don't feel numb at all. Is that normal?

Anyone else have this unexplainable, indescribable burning vagina problem?

What I do at the physical therapist

2010-02-01T11:40:00.000-08:00

When I go to the physical therapist we do several things. So far my problem has been diagnosed as vaginismus, although who knows what the heck that means? What we are trying to tackle at the physical therapist is the tightness of my pelvic floor muscles. The tightness is caused by two things: 1- a physical problem (vaginismus? maybe.) and 2- it's also a mental thing. When something try's to go in down there, I can't help but clench. I've been training my body to do it for several years now. I'll take you through an appointment:

First I undress from the waist down and I lay on a giant heating pad for about 10-15 minutes. The heat is supposed to help relax the muscles and I do believe that it does help.

Then the physical therapist comes in and uses an ultrasound machine with a small probe that she puts in my vagina and pushes it around the muscles - they call these muscles the pelvic clock. She goes around the clock holding the ultrasound probe onto the muscles until they relax.

Sometimes she will follow that up with her own finger so that she can feel what the muscles are doing. (See what I mean about other people being down there more than my husband?)
Then I have a lot of homework:1) Every day I'm supposed to use dilators to do the work that the ultrasound machine does. Dilators are basically different-sized dildos. I use the small one to push on the muscles around the pelvic clock and then I use a larger one for the "prolonged stretch", which is basically just sitting there for 10 minutes with a large dilator in my vagina. This is supposed to help stretch the muscles.

2) I also have to do kegel exercises, but they aren't just your regular kegels. I have to do "quick flicks" and "long holds". Quick flicks are hold for 3 seconds, relax for 3 seconds and long holds are hold for 10 seconds, relax for ten seconds. I have to do each of these about 3 times in about 6 different positions - standing, indian style, laying on my stomach, yoga bridge. You might be thinking, if her vagina's so tight, why is she trying to strengthen her muscles? Well, I have learned that it's important to have strong muscles down there even if you have my problem of clenching too hard because it's just as important to be able to relax those muscles as it is to be able to flex them. So I do the kegels to train my muscles how to relax.

3) I also have to do leg stretches. I know! Why? I am really inflexible and this part is not fun. But all of the muscles in your legs are directly connected to your pelvic floor muscles so it's important to stretch them as well.

Well, I'm exhausted from all this explanation. I hope someone reads this and finds it helpful. Please feel free to comment on the post if you have any questions. Coming next: why I think I need more than a physical therapist - the burning problem.

It started with a yeast infection.

2010-02-01T11:18:00.000-08:00

Well, actually, it would be inaccurate to say a yeast infection. It was more like a hundred yeast infections or one giant unending yeast infection that lasted for over two years. I'm still not sure which.

When I was in college I decided to start having sex with my boyfriend of three years. At first, it was good, and then I got a yeast infection. How was I to know that that yeast infection would still be hurting me 8 years later? We went to different colleges in different states, so I guess I partly didn't realize how serious it was because we hardly ever saw each other anyway. But if I'm being honest, when we were together, I didn't want to hurt his feelings or make him feel rejected, so I continued to have sex with him even though it was very uncomfortable and sometimes painful. We had a long distance relationship for 5 years so I guess I thought I could deal with the discomfort since it happened so infrequently. Little did I know that I was setting myself up for years of pain and sadness later.

After I finished college, I moved in with my boyfriend. And then it became a game of what kind of excuses can I come up with to avoid having sex? It was awful. He felt rejected and confused and I felt like I was broken. At this point it was not just about sex being painful and uncomfortable, now I honestly did not want it at all. I was repulsed by it and had absolutely no sexual desire.

And then we got married. I should point out that my now husband is the most wonderful and supportive person I could ever hope for. Through all of this he has never let me down and has never purposely made me feel guilty for not being able to give him what a wife should be able to give her husband. I don't need him to make me feel guilty, I feel guilty enough on my own. I've been married for two years, I'm in my twenties, and I have absolutely no desire to have sex with my wonderful, handsome husband.

I hope that this blog will help other women out there know that they are not alone. This isn't something that people talk about much and sometimes we even feel like we have to hide it. My husband gets very frustrated with the shame of it all. He says that there's nothing to be ashamed of and it's just like having any other physical problem. Intellectually I agree, but it's still hard to talk about. I am completely heartbroken and I break down crying every time I have to talk about it.

Currently I am seeing a vaginal physical therapist (who knew they existed?), a gynecologist, and a psychologist. I'm also planning on going to see a vaginal pain specialist soon, so I'll let you know what I learn when the time comes. My husband and I go together to the psychologist because she thinks that my non-existent sex drive is an us problem, not a me problem. I'm not sure if I believe that, but I hope it's true. It would be nice for this problem to not be completely about me. My next posts will update you on what I do at the physical therapist and at the psychologist. Hopefully you'll get some helpful information, or at the very least, a virtual shoulder to cry on.