Twenyt three years ago in 1988 when I was 39 I contracrted genital warts. I went to UCLA and they said I should have the warts burned off with chemicals. I went along with it. From then on I had a problem. I felt like I had a bladder infection all the time. I went back to UCLA several times complaining but they didn't know what I was talking about.
I had trouble having sex because of the intense burning. But as time went on it went into a remission. I got pregnant at 42 and had a son. I didn't have a problem with it during this time. But then over the years it would arise again and again and again and go away the same way. I could go months without it bothering me and months with it bothering me. It was awful.
I went to a special doctor in San Diego considered a quack by the medical profession and he diagnosed me with vestibulitis. He wanted me to take a myriad of hormones and if that didn't work I could have a vestibulectomy. I chose to do neither, Thank Goodness.
Last December 2011 I went into a very bad spell one more time and in desperation one more time I surfed the internet. I found Dr Rapkin at UCLA who was doing research in female pelvic pain. I knew she probably coudn't help me but I figured I would try one more time.
Dr. Rapkin diagnosed me with Lichen Sclerosus after 23 years. It is an auto immune disease of the vulva that is progressive. It was a shame that she got me so late because this disease disfigures the vulva. Inflammation makes the skin hard and the hardness makes cracks in your vulva. When the cracks heal you are scarred. Your labia minor and all the skin becomes fused and your clitoris can become buried under skin. Also your vaginal opening is reduced to a small scarred mess. This has happened to me.
I am grateful to Dr Rapkin because it looks as if she has finally helped me with the pain after 23 years. I use Clobetasol regularly to hold down the inflammation and I use topical hormones to thicken the skin. I seems the topical hormones are taking the pain away.
If I could have had these medications 23 years ago my vulva would not now be deformed to an extent that my self esteem has been compromised. All I can say is Thank God I'm 63.
Please, if you have burning and itching ask your doctor if he will test you for Lichen Sclerosus because you can stop the horrible scarring.
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I was very interested recently to be told by my renowned gynecologist at UCLA that 1 out of 70 women had Lichen sclerosis! She has 100 patients with this problem!! I had over 20 years of pain without one doctor knowing what was the matter with me. Ask your doctor to look up Lichen sclerosis!!
August 24, 2016 - 7:54amThis Comment
I believe I have the samething. For many yrs. now I have been treated for chronic yeast infections. Was tested for sexually transmitted diseases but always clear. Never a answer why I'm getting so called yeast infections all the time? Gave me diflucan and treated it again.
I noticed a white scaring on my lower lip thinking maybe it's skin cancer and as soon as the doc looked at it said " no it looks like lichen planus".
Didn't seemed to concerned, sent me home said rinse with some antibiotics and that's about it. See if it helps...
I went home to do my own diligence on it and they think that even beta blockers, antidepressants might also be connected. Which I was on BOTH. So decided I want off of both...
March 18, 2015 - 1:05pmI also noticed the spider webs they describe inside my mouth. A few yrs. into this I started getting some blisters I would call them on my tummy, thighs and when they erupt , I now have white spots where the pigment doesn't come back.
I'm married and sex became unbarable and notice blood and looks to be tears. I thought it was just getting older ( I'm 53) and prob even menopausal.
Well now I notice that my uretha looks like it has been torn or scaring maybe? So reading all of this and putting all the puzzle pieces together I think it's this and I haven't had a pap in 3 yrs. only disregarding it unless I felt I needed to go. But I have an apt. set to see the gyno this week to get it done & dissuss all with her....
But I also read that " oxalates" might be connected. It's in the foods and certain drinks. Mostly green leafy veggies, nuts, berries etc. I eat most on the list.
So I am trying to avoid most oxalates to see if it helps on the LP and helps any. If anyone suffers with it look into the beta blockers, antidepressants, and daily " Oxalates" in your food .
Hope this might help see if it can help anyone who suffers with Lichen Planus of any kind.
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Just out of curiosity...Did you actually have genital warts, or was
February 12, 2013 - 8:34amLS confused for genital warts?
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I don't know but I believe they could see the warts clearly. I had once been diagnosed with herpes and I now I believe I had an LS lesion from the LS instead.
March 18, 2015 - 4:49pmThis Comment
Hi Anon,
Welcome to EmpowHER. Thanks for sharing this important information.
Best,
Daisy
August 6, 2012 - 8:11amThis Comment