Lichen Sclerosus: Any other women dealing with this disease?

Hello,

I am 60 and was recently diagnosed with Lichen Sclerosus. This was very unexpected. The only changes I have noticed I attributed to menopause.

My diagnosis experience was horrible and am hoping to know if this is normal?

Had a pap done and that was when doctor indicated I had LS. The pap was painful and I went home torn and bleeding. This has never happened in the past. During exam, doctor asked if I wanted a prescription for LS. Since I was not having any unusual symptoms I indicated I wanted to think about it. So went home did some research and used a mirror to check the area. I had not looked down there in years. LOL I did see changes such as thickening, fusing and a little bit of white patches.

I followed up with message to doctor that I wanted to go ahead and get prescription.

Then doctor stated I needed to come back in for biopsy. This was not indicated previously and doctor had made it seem like she knew what I had and was ready to prescribe something.

So I go back in for biopsy. Is it normal for that to be very painful? I felt everything. Two punch biopsy and subsequent stitches. It was horrible and I hope to never have to go thru that again.

Three weeks later I follow up on biopsy result and doctor proceeds to tell me they never sent to lab because it was too expensive and she already knew I had LS. What???! It cost me $200 out of pocket for that biopsy. Not to mention the pain involved.

I need to find another doctor as I feel this whole experience was unprofessional. I am in Southern California so would expect there to be someone specializing in LS. I am willing to drive a couple hours for a good doctor. Even thinking about flying to Florida to see Dr. Jill Krapf.

Can anyone recommend a doctor on the West coast? Or how you found one.

Has anyone had similar experience with diagnosis?

Thank you!

Hello,

I am 60 and was recently diagnosed with Lichen Sclerosus. This was very unexpected. The only changes I have noticed I attributed to menopause.

My diagnosis experience was horrible and am hoping to know if this is normal?

Had a pap done and that was when doctor indicated I had LS. The pap was painful and I went home torn and bleeding. This has never happened in the past. During exam, doctor asked if I wanted a prescription for LS. Since I was not having any unusual symptoms I indicated I wanted to think about it. So went home did some research and used a mirror to check the area. I had not looked down there in years. LOL I did see changes such as thickening, fusing and a little bit of white patches.

I followed up with message to doctor that I wanted to go ahead and get prescription.

Then doctor stated I needed to come back in for biopsy. This was not indicated previously and doctor had made it seem like she knew what I had and was ready to prescribe something.

So I go back in for biopsy. Is it normal for that to be very painful? I felt everything. Two punch biopsy and subsequent stitches. It was horrible and I hope to never have to go thru that again.

Three weeks later I follow up on biopsy result and doctor proceeds to tell me they never sent to lab because it was too expensive and she already knew I had LS. What???! It cost me $200 out of pocket for that biopsy. Not to mention the pain involved.

I need to find another doctor as I feel this whole experience was unprofessional. I am in Southern California so would expect there to be someone specializing in LS. I am willing to drive a couple hours for a good doctor. Even thinking about flying to Florida to see Dr. Jill Krapf.

Can anyone recommend a doctor on the West coast? Or how you found one.

Has anyone had similar experience with diagnosis?

Thank you!

@julievansickle. Hi. I also have this. Did you ever get blisters? I do and i hate the clobetisol so much bc to me it stinks to high heaven. I dont use it every day like i used to and now i have scars. Toward the end of my marriage i couldn't even have sex. Im 65 and i know i will never again know the closeness that being in love can bring. It makes me so sad. I try to tell myself if that man is the right one it might happen. But you have to tell that man at some point in the beginning of your relationship about your condition right? How would someone find the courage to do that?
Sorry for bending your ear.
Best of luck, Judy

@danybegood1
I have had lichen sclerosis for many years. I had been misdiagnosed several times. Herpes was a common one. The first time that one almost ended my marriage. About 4 years back I had the worst outbreak of my life. My dermatologist tried everything, including prayer. I would get white cracked skin with horrible blisters. It was the worst pain of my life (I went through labor with a ten pound baby with broken ribs) and this was worse. It lasted months. I couldn’t even walk. I used a sits bath to pee in. The thought of a bowel movement would send me into a panic. Every cream burned even more. Finally my doctor went old school. The only thing I could put on it was a mixture of Crisco and honey. I keep it by my toilet and use it anytime I get a small tear. She explained that they use it on babies because it is so mild, the honey helps healing and it also acts as a barrier so the urine doesn’t sting. She even had me try inserting Valium vaginally. Even better she started me on a medication called Nystatin. The white blistering was yeast gone wild. I have been taking one pill a day ever since and have not had a serious outbreak in years. For me it was a miracle.
I also understand the pain when having sex and the emotional pain of not having sex. I am married to the most amazing man of forty years. We have not had sex in years. The thought of any trauma that would cause an outbreak is overwhelming to me still.😢

I have had LS for many years. It started on my side and now has expanded to my private areas, neck, back, arms, legs, everywhere my skin comes into contact with my own skin….back of knees, elbow crease, etc. I have been to Duke Medical Center and Dr. Libby Edwards (supposedly reknown for treating LS), not to mention about 4 other dermatologists. There has not been enough research on it because it is mainly affecting women, my opinion. I have given up on ever finding any drug or supplements that truly make it go away. I use clobetesol cream on private areas twice a week. I use a rich lotion for my back, along with cold pressed castor oil.