It is an autoimmune condition....that I do plan to write about some time because I want to alert women to it but because it involves the genital area, I've been hesitant to write about it. I had never heard of it, and I let it go way too long without treatment because I was ashamed to go to the doctor because I thought the problem was because of my weight -- this was when I was about at my heaviest. The condition is called Lichen Sclerosus (also spelled Sclerosis). A good site to read about it is here: http://www.niams.nih.gov/Health_Info/Lichen_Sclerosus/default.asp

It is non-contagious and often called rare, but my GYN said it is no longer that rare -- she has lots of patients who have it. Yet, almost nothing is written or discussed about it.

For me, it started about 7 or 8 years ago with the tiniest bit of itchy crotch. Other than a couple of cases of vaginal infections when I was young, I've NEVER had an itchy crotch, so it was a little surprising. I tried changed laundry detergents, changing underwear more frequently, going without underwear around the house, etc. But mostly, I KNEW that it must be because I was so fat that I must be sweating more, and that was causing it. IT WASN'T!!

Had I been thinner, I would have gone to the doctor immediately to check it out. But I was ashamed, and even missed my annual pap smear. It was a very gradual progression -- that's why it's important to check it out early. But every month, it got a little worse. For the last few months before finally getting help, I was unable to have sex because the pain was so bad. Finally, after about 1-1/2 or so years, the itching was very bad but accompanied by incredibly severe pain which escalated quickly within a couple of days.

Honestly, I've never been branded with a red-hot poker anywhere on my body, but I think something like that couldn't have hurt more than the pain from this -- and on my vulva!! I laid awake all night -- I even cried which I NEVER do. My GYN could not see me that AM but my GP could. She knew immediately what it was, had a very worried look on her face, and gave me a piece of paper on which she had written "Lichen Sclerosus" and told me to look it up when I got home. I was so scared! She also gave me a prescription for clobetasol -- an ultrapotent topical steroid -- and told me to follow up with my GYN. By the second day of the steroid, I began to get some relief. A week later, my GYN confirmed the diagnosis, and continued me on the clobetasol and another cream, ESTRACE, which is an estrogen cream. I had to use the clobetasol for about 2 weeks and then switch to ESTRACE and then repeat.

When I asked how long I would have to use the creams, my doctor looked surprised and said, "For the rest of your life." What a shock. The upshot is this: My poor vulva was badly damaged by scar tissue from this condition. Had I gone immediately for help, I would not have the damage I now have.

Sex continued to be difficult for more than a year, but now I have a normal sex life (I just have to remember to use a little of one of my creams before intercourse) -- actually, for a woman my age, I probably have a VERY healthy sex life. (From Jody - I love hearing this!) My GYN said she actually has a patient who had so much damage that her vagina nearly completely closed up and had to be surgically opened.

For the last couple of years, I was able to ride my bike again -- something I couldn't do for a long time because of severe discomfort. But my genital area will never be completely normal again and unless a "cure" is found, I will have to use those meds forever. Yuck!

I tried to tell every woman I knew about this -- my sister, nieces, SIL, friends -- everyone looked at me as though I was disgusting. But it isn't contagious, and I didn't cause it -- it's an autoimmune condition. I can't help it anymore than someone can who gets MS or Parkinson's. But because it involves the genitalia, people are disgusted. I'm sorry I have this, but I wasn't ashamed -- it wasn't like I brought it on myself. But I've learned to be a little wary of talking about it now. Nevertheless, I want women to be aware of it. I really think women need to be educated about it, but I am a little nervous about making it personal.

On the old Oprah.com website there was a forum and there was a large number of women posting about LS and sending emails to Dr. Oz and Oprah begging them to talk about it on their show, but no one wants to touch it which really puzzles me, because people talk about all sorts of STDs (LS is not a STD) but no one seems willing to talk about this condition. Baffling. Anyway, I looked for a discussion on her new website but cannot find one.

If you write about this and educate your following, perhaps there will be at least one person out there who will be saved from the pain and damage I went through. Thanks.

From Jody: So I am writing about it because there may be woman out there afraid to say anything OR afraid to seek help & will end up worse because of that fear.

If you have questions, I will pass them on!