Wednesday, June 24, 2009

Online Tutorial for Vulvodynia

The NVA just launched a fabulous new online resource, Everything You Need to Know about Vulvodynia. It is pretty comprehensive and includes everything from what it's like to be single and dating with vulvodynia to how to prepare for a doctor's appointment. Definitely worth checking out and sending along to friends and family.

Monday, June 22, 2009

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.

Tuesday, June 2, 2009

This will not define me. This will not define me.

"I will not let this define me, I will not let this define me...."
I have found myself chanting this a lot in the last week--usually when I'm headed to bed or taking all my meds in the morning or evening. I find that the vulvodynia takes up so much of my thinking and being, that I realize I'm in danger of turning into the vulvodynia girl. And that's the last thing I want.

I don't want people to feel sorry for me.
I don't want to feel sorry for myself.
I don't want to be dealing with this for years or for the rest of my life.
I want my fiance and I to be able to have a sex life.
I want to be normal.