Thursday, May 28, 2009

A good article about vulvodynia...

I just came across this great article called, "A (Chronic) Pain in the Vadge" on Definitely worth reading!

Update on last week's appointment

After all that worrying about my appointment last week, I'm happy to report that it went well. I went home with more prescriptions (my mom just bought me a pill organizer - !), but the good news is that my "skin looks great," meaning that my inflammation has gotten better. I still experience pain - in fact, this week has been pretty bad, with me waking up in the night because of it - but at least the skin is starting to heal. Baby steps, right?

I can't say enough good things about my care-giver. I switched to the nurse practitioner who ran my wellness class and she was really really great. Not only did she take the time to answer my questions and explain everything without making me feel stupid (you'd think this would be the norm, but it's not), but she also was very sensitive to my "issues." She didn't just whip out a mirror to show me my vagina when I asked her about where I should be applying my topical ointment (I've had this happen a few times during exams, which makes me feel sick/anxious). She asked first and gave me alternatives to the mirror option. She also asked if I could handle the speculum, if I wanted her to insert it or if I wanted to insert it myself. This is the first time during an exam that I've been given choices and it went a long way toward easing my anxiety and making me feel in control.

In a couple of weeks I return to physical therapy. I'm looking forward to seeing my pt and moving forward. I don't want to be struggling with this same issue ten years from now...

Wednesday, May 20, 2009

Tyra Banks Show and Vag

I've yet to watch this and I've heard mixed things about a recent episode of the "Tyra Banks Show," which focuses on "married virgins," but it's great that she's bringing the topic of vaginismus into the mainstream. Any thoughts?

Monday, May 18, 2009

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.

Friday, May 15, 2009


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.

Tuesday, May 12, 2009

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.

Tuesday, May 5, 2009

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.