Tomorrow, tomorrow...

I have an appointment with a vulvar pain specialist tomorrow morning. The last time I had an appointment with a specialist at this same provider, it was a bad experience. I won't go into it, but let's just say I was left feeling vulnerable and anxious after having been forgotten in an examination room for close to an hour.

I switched care-givers the next day (it wasn't just the waiting, but a number of things - the waiting was what convinced me to follow my instincts and switch).

I am hopeful for what tomorrow brings - hopeful and anxious at the same time. I know the specialist I'm seeing - she led a wellness class I took last spring - and I really like her and feel comfortable with her. I know she will listen and remember my history. I know she will be patient as I ask question after question. But I'm dreading the actual examination. I have so much pelvic floor tension and have been in discomfort/pain for so long, that I feel physically sick when I think about how painful the examination might be.

This is counter-productive and feeds the cycle of pain. The more stress/anxiety I feel, the more tense I will be, the more my muscles will spasm due to this tension, the more pain I will experience. I know this in my head, I do, yet I can't re-train my brain to relax and let go, relieving those pelvic muscles of some of the tension and possibly allowing me to have a tolerable examination.

I just want this struggle to be over. I am so tired of this consuming my life. I don't want this condition to define who I am, but it's hard not to when it's what I think about a large part of my waking hours.

Confusion

The International Society for the Study of Vulvovaginal Disease (ISSVD) defines vulvodynia as "chronic vulvar discomfort or pain, characterized by burning, stinging, irritation or rawness of the female genitalia in cases in which there is no infection or skin disease of the vulva or vagina causing these symptoms."

This is the first time I've seen the definition of vulvodynia include the caveat that it's a condition where there is no infection or skin disease present. I have lichen planus, a dermatological condition. So does this mean I don't have vulvodynia? Even though the specialist I saw diagnosed me with vestibulodynia? Or does lichen planus not count as a disease?

I'm so confused. Not only about this, but about the role of physical therapy in getting better. First I was told to hold off on pt until my skin was healthier. The second time I saw my doctor, she said I would benefit from pt - even though my skin wasn't better yet. She had forgotten that she had initially told me to hold off on the pt.

I switched care-givers and will see my new specialist next week. I'm looking forward to getting some answers.

Anxiety Overload, part 2.

It's been a crappy couple of days for me. I've been feeling really lonely, I haven't been feeling good physically (the shooting pains are back), and this morning I woke up feeling really anxious. I can't seem to lose this anxious feeling.

My wedding is less than six months away and I can't stop wondering if I'll ever be able to have intercourse. If I'll ever be able to make out without experiencing pain. I don't want my fiance to agree to a life without physical intimacy, but I can't make any promises.

Some days, I have hope. And (more frequently it seems) some days I don't.

I'm tired.

I can't believe it's been a month since I last posted. This lapse doesn't hold any significance, really. It's not that I've been in a lot of pain this month and have sunk into a depression. Or that I've been feeling so good that I haven't thought about blogging. I write blog posts in my head all of the time. I just haven't had the energy to write.

I was out to dinner with a friend of mine who also suffers from vulvodynia and she said, simply, "everything takes so much effort." And she's right. Every day I do something to try to feel better, to try to conquer this, to try to stay positive. Every week I try to think of ways to stay connected to my boyfriend, to regain some of the intimacy we lost to vulvodynia. It all takes effort and energy that I sometimes don't have.

But recently I picked up a book that described, so uncannily, my experience with this condition that it has really motivated me to keep working. It's called The Camera My Mother Gave Me and it's by Susanna Kaysen, the woman who wrote Girl, Interrupted. I read it in one night. And then the next night, my boyfriend picked it up and he read it in one night.

It begins: "It's a yeast infection," said my gynecologist in June. ... here try this."

And continues as she goes from doctor to specialist to alternative nurse to acupuncturist (and more). We hear about her experience with boric acid and sitz baths and antidepressants - all things my friends, collectively, have tried. We read about her caustic relationship with her boyfriend who basically forces her to have sex regularly and constantly berates her, saying, "You're not doing anything about this!" (This was the part of her story that wasn't like mine and left me thankful for being with someone who understands how much I'm trying.)

This book won't leave you feeling optimistic or hopeful - it ends before we find out if she ever feels better - but there is something about seeing yourself in someone else's story. My friends with vulvodynia do that for me already, but there was something about reading a published memoir that reassured me that I'm not crazy. That this isn't all in my head.

Vulvodynia on Oprah Radio

Last week on Oprah Radio, Dr. Mehmet Oz talked with Dr. Howard Glazer about vulvodynia. It's so rare to see vulvodynia being talked about in the mainstream media, that this was a good thing to discover. I don't understand the chuckling that they engage in mid-way through this clip, but what can you do? Does anyone know where you can listen to the full show, which aired last Friday, March 27 on XM radio?

"The Pain Down There"

There's a great article about vulvodynia (pdf) in the Pain Community News, Spring 2009 issue, the newsletter of the American Pain Foundation. And it captures so well what I've been struggling to articulate these past few months without success: that, at its core, vulvodynia attacks your identity as a woman, your very sexual being. I've heard women describe this as "being broken" or "feeling incomplete." I've had friends talk about feeling "unattractive." All because of vulvodynia.

I feel all of these things. And that is harder to deal with than the discomfort and physical pain because of how my identity is impacted. Vulvodynia is chipping away at this part of me, little by little. This was most apparent the day I was in a bridal shop a couple of weeks ago, trying on wedding gowns and feeling pretty and feminine. I hadn't felt that way in forever. A part of me was sad, looking at myself in these wedding gowns, because I knew that I probably wouldn't be able to have intercourse on my wedding night. But, the over-arching feeling was that I felt attractive again.

From the bridal shop I went straight to a support group meeting for women with vulvodynia. My little reprieve from feeling like an incomplete woman was over as we talked about what it's like to live with this pain. It was a roller coaster of a day and I went home feeling exhausted and not sure what I could do to build back up my sexual identity.

This article helped. It provides some tips for increasing intimacy with your partner and for helping regain your self esteem. And it also gives some guidance on how you can manage or prevent your pain by doing things like wearing 100% cotton underwear or washing the vulva area with only water. Definitely worth reading and passing along.

Ups and downs and ups...

I had a difficult week last week. All this time, the pain I've experienced has been mostly burning and just general discomfort. I usually compare it to getting something in my eye that's irritating. Annoying, yes, but not life altering.

But starting last Saturday, I felt a different kind of pain - a sharp kind of pain when I shifted in my seat or walked or wore jeans that were close fitting. I finally understand what a lot of the women who are in my class experience. And it really sucks. That pain has gone away for now, but I still worry that it's just under the surface.

I had a follow-up appointment with my specialist and she said that the inflammation has gotten better, but then why are my symptoms worse? She changed my treatment, so hopefully things will get better soon. I'm still trying to stay positive, doing some stretching and meditating, trying to eat healthier foods, and taking better care of myself in general. Stress exacerbates my condition, so I'm trying to eliminate that from my life as well (which is difficult these days).