Thursday, October 6, 2011

I took the Summer Off...

…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.

Friday, June 24, 2011

Recipe for a Perfect Start to Summer

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.


Monday, June 20, 2011

Penis Colada

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.

Thursday, May 26, 2011

The Penis Process

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.

Monday, May 16, 2011

The Sword Has Found Its Sheath

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!

Thursday, May 12, 2011

Extended Dilations, Hormones and More

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.

Wednesday, April 20, 2011

I've Been Botoxed

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.