Lichen Sclerosus: Any other women dealing with this disease?

I also was diagnosed with morphea (inner thighs) just as I was being treated for lichen sclerosis. At first I was told thge two were not related, but since then I learned that it's not unusual to have both although it's possible to have one or the other alone,

I am one of the fewer number of men with (proven) LS and I appreciate all the information I learn fro patients and the Mayo Clinic experts.

I’m a sufferer. I have vaginal and labial atrophy and a recent biopsy suggests lichen sclerosis. I cannot touch my genital area at all except to apply the Clobetasol Topical and I have to be very gental or the skin will tear. I can only blot with toilet paper to dry after urinating. This has killed any chance of being sexual and I am miserable.

Where do I go for real help?

Good morning @searchingforrelief I’m so sorry to hear that you are suffering with this. How long have you had lichen sclerosis? Maybe we could ask @januaryjane and @artist01 to enter the conversation and tell you how they have coped. There are several discussions about lichen sclerosis you may want to read.
https://connect.mayoclinic.org/discussion/lichen-schlerosus/
Are you seeing a gynecologist for this?

I have had lichen sclerosis for 10 years. I was finally diagnosed by the fourth gynecologist I found. I see her about every two months. My labia minor are all but gone. During my last visit, she took a vulva biopsy. I am awaiting results. My perineum and close by regions are covered in white. For now, I am to only apply Vaseline and still use Premarin twice weekly. At night I take 25 mg. of Amitriptylin. I tried the Mona Lisa, but only once. It is very expensive and not for me. I have come to the conclusion there is no hope for me. Sure, I have tried all the meds and compounded mixtures, but no help right now. @joybringer1

Another biopsy. Another lichen schlerosus result, though to me the numerous patches on my entire torso and back look like photos I’ve seen of morphea. My dermatologist keeps referring to a spectrum.

The Mona Lisa really helped me. It is very dependent on the person who does it. Combined with PRP I was in remission for 6 months.

I have the results of my vulva biopsy. All of that white plaque is pre-cancerous. I see a doctor that specializes in this type of surgery. Then we will schedule the surgery date. My husband is so upset and wants to talk with the oncology doctor. I already know the surgery will be very painful. If there is no "pre" before the cancer, I guess that is all for me. Well, many of you have horrific problems so mine does not count for much. We don't speak of the "what ifs" and our house is very quiet. We had to take our beloved rescue dog, Simon, in for his eternal rest. We are changing where our rugs go as we had them all lined up for Simon so he could walk without slipping on our wood floors. @joybringer1

@joybringer1 I’m so sorry to hear about your biopsy results. It just doesn’t seem fair, does it? And, please don’t think that your problems are any less than anyone else’s. To you and your husband, the problem is real and it’s serious. You might ask if there is a counselor in the oncologist’s office. They can help you talk about, and cope with, this new diagnosis. Will you try that?

@kathy5645 Ive sorta heard about Mona Lisa surgery, but i always thought it was for cosmetic reasons. You said that it really helped you and you “were in remission for 6 months.” Are you no longer in remission, if it’s OK that I ask?

I had a hysterectomy and bilateral oophorectomy in 1972 at age 31. Over the years, I took just about every hormone product ever marketed. The first one was Premarin, that at 8 years began causing the symptoms it was supposed to prevent. I tried to get off the hormones several times over the years, but after a time without them, I would always begin to suffer terrible side effects, One time after two years without hormones, I developed all the symptoms of chronic fatigue syndrome. even unable to smile no matter how hard I tried. That was when I found the doctor who put me on bioidentical troches, and within ten days I was normal. Wow! What a relief. Then I moved to Australia and had to find a new doctor and a new pharmacy, since bioidenticals are only available from compounding pharmacies. A couple of years later, in 2005, I was diagnosed with lichen sclerosis from a red patch on my upper thigh. The dermatologist who diagnosed it (by sight and biopsy) said it probably would never appear anywhere else. In 2009 I had moved back to the States, had another new doctor and another new pharmacy. Within a few months, the lichen sclerosis had traveled to my crotch, forming a crusty, bleeding line around my rectum and vaginal/urinary area. After my next move to another state with another new doctor and another new pharmacy, the crustiness improved and the bleeding stopped. Then when I turned 75, I decided again to discontinue hormones, and this time I suffered no symptoms, and the sclerosis outbreak completely disappeared. That was six years ago. I have concluded that it was definitely related to changes in hormone use. I can write a novel about my experiences with the different hormone products. There's so much that science has yet to discover about our fancy female bodies. One writer said that a man's body is a Timex watch, not all that complicated, but a woman's body is a Swiss watch with a lot more moving parts and a lot more that can go wrong.