Where to start?

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?

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?

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

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

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

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

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

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

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!

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?

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?

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

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

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

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

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?

That commercial for Seasonique birth control.

"Did you know?" 

"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

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

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...

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

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

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.