Friday, January 21, 2011

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

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?


Hannah said...

I know it's hard, but I wouldn't worry too much. I really think your desires will come back when your pain is under control. Have you noticed that you have many even a tiny bit more drive when you are having a really good day? I struggle with the same problems (I don't know what my hormone levels are), but I know that when I hurt in that area the last thing on my mind is sex! The outside stress you have at school doesn't help either. I have a 17 month old daughter who wears me out so at the end of the day I have nothing left! Just wanted to let you know you are not alone in that department.

I am kind of new to reading your blog, but I was wondering if your burning is all the time or just with touch/penetration? Have doctors ever thought you could possibly have pudendal neuralgia? I kind of think all these things are related to irritation with the pudendal nerve (vestibulitis, generalized vulvodynia, PFD, IC). Of course there is a difference between pudendal neuralgia and pudendal nerve entrapement and you can have those other diagnoses without having a pudendal nerve entrapment, obviously.

the girl with pain "down there" said...

I haven't noticed any increased sex drive on good days. I have a better attitude, but it doesn't make me want sex any more.

The burning happens when I'm dehydrated, if I sit for too long (especially on hard surfaces), and at totally random moments that I can't explain. As far as penetration goes, I don't do any of that, but it would probably burn.

I have been diagnosed with Vestibulodynia (basically Vestibulitis/Vulvodynia) and Pelvic Floor Dysfunction. My doctor hasn't said anything about the Pudendal nerve. I'll have to read up on that.

Jaene said...

I could honestly almost copy and paste this post to my blog!!! I completely understand how you are feeling:( I noticed a HUGE difference in my burning when I gave up tea and chocolate!! That was a very sad day for me too:( Those are 2 of my most favorite things!

Jaene said...

BTW...How has your anxiety been? Is it getting any better?

Elaine B said...

Man, you just keep writing down exactly the feelings I've had. Don't worry about sex - your sex drive will come back when your vagina is ready. And while hormones are certainly important, keep the basics going too. Therapists have told me a woman needs 30 minutes of foreplay to be aroused - and I find that that means I need 30 minutes of hugging, kissing, and necking (clothes on) at a minimum. And don't forget masturbation - I find that is a great way for me personally to create desire.
I'm sorry you've hit a road bump.

xAx said...

hi :) i've been an adoring reader since you started posting but recently started following you and this is the first time ive posted. youre actually one of the reasons i started up my blog on dealing with vaginismus as an 18 year old girl
keep up the brilliant work, youre an inspiration.

the girl with pain "down there" said...

Thanks for the complements xAx. Blogging really does help in dealing with it all.

Anonymous said...

Ya, I have thought everything you have thought!!! I have been super down lately too because it seems like I've done all the treatments possible and I still feel like crap down there. I still dream of feeling better physically, but even if that comes some day, I am afraid I am never going to want to "risk" feeling bad again by trying anything sexual. It's become such a scary thing to me, and it's only been a year of suffering. I totally understand you, and hope that we both get answers soon.

Claire said...

Hi there,
I haven't been keeping up with your blog because of stresses in my life, but I so appreciate your recent post. As I've said in the past, our pain situations sound so similar. I am able to have pain-free intercourse, but afterwards I develop bladder irritation. Sometimes as a result of a urinary tract infection, other times it must be nerve related. At the moment my urethra is in a great deal of pain. I'm seeing a new urologist tomorrow who was recommended to me by Dr. Goldstein. I'll let you know what I learn. Last month Goldstein tested my hormones and saw that they had normalized with his cream. He had me cut back to applying it just once a day. I wonder if that's the reason I'm feeling more bladder pain? Hard to tell.

As always, your posts are inspiring and remind me I am not alone. Best of luck with all of it--we will work our way out of this!

xo Claire