Pain

I have been feeling pretty blah the past few days. I am in pain -- physical pain -- pretty much all the time. And this physical pain just reminds me that I'm not getting better yet, which makes me feel down. This past week I've felt pretty hopeless that I won't ever get better and that I'll never be able to have sex or just feel healthy.

It probably seems like I'm one of the lucky ones -- that the doctors have finally figured out what is causing my problems, they've prescribed me some medication, and all I have to do is follow their directive and I'll conquer this. But it's not that easy. I guess it's never really that easy. I should probably know that by now.

Like many women with vaginismus (or maybe just many women? I don't know...), I have "issues" about looking and touching myself. I feel anxious and nauseated whenever I think about it, let alone attempt it. So when I try to apply this steroid ointment to the affected area, I feel paralyzed. I have a hard time breathing. And I can feel my whole body tense. I end up just blindly trying to apply it, which I don't think is too effective.

Meanwhile, I feel the clock ticking. I feel the pressure of time, because I already have some "architectural changes" and it will just continue to get worse if I don't manage it. I worry that if I don't conquer this phobia of mine soon, I will never be able to have sex, I'll never have children, I won't feel fulfilled.

During all this, I'm in the process of planning my wedding. One of the tips in a guide I picked up recently (a hipster guide), said, "have lots of sex." Helpful. I feel like I can't escape this and it just makes me feel stressed out and anxious and hopeless.

Anxiety Overload

I'm feeling really anxious today. And when I feel anxious, I feel it everywhere. My whole body is tense, I snap at my fiance, I lose patience with my dog, I screen phone calls and want nothing more than to sit on my couch and watch Bravo.

A year ago this Valentine's Day marks the beginning of my second attempt at overcoming vaginismus through physical therapy. All was going really well until this past July when I started feeling some minor discomfort and irritation when I used my dilators. My physical therapist recommended I get checked out and when I did, my gynecologist performed a biopsy on me to rule out lichen sclerosis. The biopsy was really painful. Even thinking about it now brings tears to my eyes... I was essentially re-traumatized. The biopsy came back negative for lichen sclerosis and lichen planus (both chronic skin disorders) and so I went on my merry way, hoping it was just a yeast infection and that I'd get better and be able to resume physical therapy soon.

That was six months ago. Just a couple of weeks ago, after visiting a specialist in vulvo-vaginal pain, I learned that I do, indeed, have lichen planus. Yesterday when I was cleaning out my desk I came across five letters from various doctors telling me my test results were normal. With each one unearthed, I got more and more frustrated. Because this specialist told me that I have most likely had lichen planus for years and years and that it probably caused my vaginismus. It's just that no one has recognized it before now.

So here I am, 33, about to get married and still unable to have sex, let alone children. I'll have lichen planus for the rest of my life, the hope being that it goes into "periods of remission." Some days I'm hopeful that I will heal soon, that I'll be able to resume physical therapy. Today I'm just sad and frustrated and worried about my future.

"Painful Sex Still a Painful Secret"

I already have this article in my list of resources, but if you haven't already read it, you should. If enough people comment, ABC News will consider doing a TV spot on vag, which is desperately needed. So take a minute, read "Painful Sex Still a Painful Secret," comment, and then please forward along to everyone you know.

What's frustrating about this is how few people -- including doctors -- know about this condition. The one time the word was used on network television, it was on an episode of "Private Practice." It was a total victory that the word was used, I'll admit that. But it was a shame that the couple was cured after just a couple of sessions (spanning maybe a week?) and also with the use of a drug. It's completely unrealistic. One day, the couple can't have sex. The next day, they're mating like bunnies. Please....

It Has a Name!

When I was 25 years old, I came across the word "vaginismus" in a book about sexual health. It was the first time I realized that what was wrong with me, what I had struggled with for years, had a name. Vaginismus.

This was after years of seeing therapists and gynecologists, searching for an answer. I spent a lot of time and money and didn't get very far until the day I found this word and read the symptoms. I remember being in a bookstore coffee shop and my heart dropping as I read. This is me, this sounds like me.

I've never been able to use tampons or have sex. I have my vagina to thank for that - vaginismus is a condition that causes the muscles around the vagina to contract involuntarily, forming a kind of impenetrable wall. Before finding out about this condition, I thought I was alone. But now I know that there are a lot of women who are experiencing the same thing - many are like me, who know what it's called and are furiously working toward overcoming it. But many more were like me pre-25, living in the dark, afraid and hopeless.