Worrying...

There was a time when all I could think about and focus on was my vulvodynia/vaginismus. It defined me. Even when I wasn't actively thinking or worrying about it, it was the running backdrop to everything I did or thought.

And then when my dad died this summer, I found that my thoughts shifted. Suddenly, the energy I was putting into my treatment - all of the acupuncture, the herbs, the meditating and stretching, the physical therapy, etc., etc., etc. - was needed elsewhere. I found that I could not physically focus on both my vulvodynia and coping with my dad's suicide. I was exhausted. I needed a break from everything. I stopped the herbs and acupuncture. I slacked off on my ointments. I no longer did the stretching and biofeedback homework that I used to be fairly diligent about.

When I went back to see my specialist a couple of months after all this happened, I discovered that taking this "break" did me no good, not surprisingly. My skin was inflamed again, almost as bad as it was before. Stress can exacerbate my condition and I don't know if I've ever been more stressed out than I am now, what with dad's sudden death, my upcoming wedding, and an imminent move to a new city. I went back on the ointments, started stretching again, and am trying to keep motivated. I saw a lecture last week by a doctor who specializes in vulvar pain and was frightened by what she shared about lichen planus. I am trying to be a good patient. I do want to get better. It's just exhausting.

live each day with hope

I started back with physical therapy a couple weeks ago after an 11 month hiatus and was feeling really good about it. I was able to insert the biofeedback sensor without any trouble, my physical therapist was able to do internal massage without too much pain, and I was enjoying being able to see real progress being made in my ability to relax my pelvic floor.

And then today I noticed some pain when my physical therapist began to apply the lidocaine. It was like a tightness and burning and tenderness near my clitoris that I hadn't really noticed before. I told my pt about it and she noted that the skin did look irritated.

Which of course made me think back to last July when I was in the same room, on the same table, having a very similar conversation about pain and skin irritation, only to be diagnosed six months later with lichen planus and vulvar vestibulitis.

I am at a breaking point. I am so tired of these false starts, the constant attempts at remaining positive and doing my best to feel hopeful even though what I often want to do is curl up in bed and sleep until this is over. If I have another major setback, I'm not sure where I will find the energy to keep going. And even as I type that, I know that I *will* find the energy - I always do - and that I will live each day with hope that the worst is behind me.

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.