Are there others out there who had lichen sclerosus before their hysterectomy and want to share their experiences?
I've had lichen sclerosus for many years. For those who have never heard of it, it is a fairly uncommon skin disease, maybe immune system related. It can occur on any part of the body, but is most often in the genital/anal area. Symptoms are itching (think severe yeast infection), white patches on the skin, and thinning of the skin. It is not contagious. It cannot be cured, but can be treated. Treatment is usually a topical corticosteroid.
In my case, mine had been under control for a long time. I used my cream about once every five days. Beginning last summer I had a mild flare-up where I needed to use the cream about once every three days. I can tell if I need to use the cream because I feel what I can only describe as "pre-itchy" irritation. Almost always, I had less irritation during my periods.
I used my cream the day before my surgery. After surgery, I had no itchiness for over three weeks!! At that point, I needed to use the cream every other day. Then, at about six weeks, I had a major flare-up, and have been using the cream twice a day. (The initial dosage when I was diagnosed was four times a day for several weeks).
At the same time, I think I had no hot flashes for the first three weeks. I also think the hot flashes became more frequent at about six weeks.
So my theory is that lichen sclerosus (or at least my case) does better on lower estrogen, but not on very low estrogen.
I started using the Vivelle Dot patch at the .05 dosage last night, so we'll see if the lichen sclerosus improves and if I have a reduction in hot flashes.
Does anyone else's experience match and/or contradict mine?
Sorry I can't give you the information you asked for, but was hoping you could give me some. I had my hysterectomy in 2005, both ovaries removed. I have been suffering from menopausal symptoms since, including extreme dryness. I noticed that the skin around my vaginal area was tearing, specifically the perineum, and white patches and cuts were appearing. I saw my gyno and he did a culture, but said he was sure I had Lichen Sclerosis.
He just called and said I have a very minor bacterial infection that he is prescribing treatment for, but that he is sure I am suffering from Lichen Sclerosis. I have done a lot of research on the Internet, and it sounds pretty scary. My doc didn't seem to concerned and told me to use a corticosteroid cream 2x a day(prescription) and return in two months to see if it is getting better. I am relieved to know that this can be treated, because sex is pretty painful at this point due to skin tears. I am not allowed any hormones due to high breast cancer risk and use of Tamoxifen, though my Oncologist said vaginal estrogen is ok to use, so I have been using estradiol suppositories (which I purchased on the Internet) which have really helped the vaginal dryness, but of course, not the Lichen Sclerosis.
Wondering what your experience has been with this disease? Any information you could give me would be helpful.
I guess in a round about way I answered your question since I just got diagnosed with this over 2 years after my hysterectomy.
In late 2000 I had what I thought was a recurring yeast infection (that yeast infection kind of itchiness was my major symptom, but the itchiness was pretty intense), which I treated with OTC cream. When that didn't work, I went to my doctor (GP), who prescribed yeast infection medicine, which also didn't work. He then suspected lichen sclerosus and referred me to a gynecologist who also recognized my condition. She did a biopsy, which confirmed it. She let me know that lichen schlerosus is not cancer, is not curable, but is treatable. Treatment is typically corticosteroid and some might work better than others (don't know if it is the active ingredients or inactive ingredients that change effectiveness). First we tried clobetasol 0.05% (generic for temovate) which wasn't effective for me. Then we tried triamcinolone acetonide cream .025% (generic for aristocort). This worked very well for me. I started with a pea-sized amount applied several times a day until the itchiness was gone. Then I worked my way off the cream until I reached about once every five days (based on my comfort level). My skin still shows white patches even now, but it doesn't seem any more "fragile" than before the lichen sclerosus showed up. I'm in the process of backing off the frequency of the cream application again now that my hormones seem to be in a better range (I'm at once every three days right now). FYI, we want to use the minimum amount of steroids to keep the condition in control because steroid use can also cause thinning of the skin.
So, my advice is to keep up the steroid cream (give it about two weeks), ask your doctor to switch if the first (or second or third) doesn't seem to work for you. Based on my experience, there is definite reason to believe that you'll get yours under control, too.
First post ever here but I am moved to offer any ideas in this area. I have had Lichen Sclerosis for 37 years. Started with the relentless itching and skin thinning. It has been treated when necessary and sparingly with Temovate. The condition arose immediately after I had surgery, a combined gall bladder removal and appendectomy. At the time I was very emotionally upset over a variety of issues.
Many years have passed and I have learned to live with the outbreaks. The only new insight I can add here is that six weeks ago I started Wellbutrin 150 mg, slow release, twice a day for depression. Within two days the fissures and raw tissue cleared up. No itching at all. I have not had one outbreak in six weeks. It is the longest I have gone without an outbreak.
I don't claim to know the connection..is it the drug? Is it a mental connection? I am at last calm and feel happy, relieved of so much tension. My GYN said "no connection"....I say there is something happening here. I don't expect a cure but I do know the symptoms have subsided ...so far...I'll keep you posted on a longer term observation.
I know that any help with this condition is a blessing. Coincidentally, my IBS has dissapeared at the same time. I keep repeating to myself, "It's not the fiber, the fats, the coffee, the eggs, stupid, it's the BRAIN!!!" Hope this helps if only in a small way.
We just got back from a spring break trip to an all-inclusive resort located just south of Cancun, Mexico. My lichen sclerosus was symptom-free the entire time. I used my cortisosteroid cream once in the eight days that we were there -- just as a precaution. I don't know if it was the climate, the relaxation, or the estrogen taking effect. I'll be curious to see how things go now that I'm back to the real world!
I'm replying to the L.S. thread. I was diagnosed with Lichen Sclerosus a year ago and am having a horrible time right now. Going to the bathroom is like entering the gates of hell. The burning is beyond painful. I cry every time. I finally got the Dr. to give me some Lidocaine.
I wondered what you would describe as a "flare-up."
I started out with redness, itching and perineal fissures on and off form over 5 years. After a fissure didn't heal for over a month the Dr. noticed two small white spots..l.s.
He gave me Clobetasol and it didn't help. Then he gave me Protopic and in a week the fissure healed. I continued on a maintenance dose and was fine for a year. Last month a fissure cracked open again and turned into a deep ulcer. Nothing seems to be working.
How do you all describe a "flare-up?" Just wondered if anyone had anything like me.
A flare-up is when the LS has been under control and something triggers it again. I think what you see or what happens is very personal. Sometimes I have the fissures and sometimes I get some discoloration.
If you go to the Information tab (upper right corner) and choose Resources it will take you to the Resource Library. If you choose the one on Immune issues you will find a link to a Lichen's Sclerosus group. They have some good information on managing the disease.
Haven't been on this website for several years, so glad to be back and find you all here. What prompted this return is a diagnosis of L S. earlier this year, and the negative effects this has had on sex with my husband. Although the comments above are a few years old now, they are still very helpful since it reminds me that I am not alone. Will now go and check out the resources elsewhere here next!