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Trying to connect with Lichen sclerous and vulvar cancer women.
Gynecologic Cancers | Last Active: Jul 29 10:10am | Replies (64)Comment receiving replies
@andwho Hello there. I have LS. It has been 28 years now since a suspected diagnosis by my gynecologist (of many years) at my annual visit then a confirmation biopsy. I was also diagnosed with vaginal atrophy related to peri (soon complete) menopause at that time as well. At first I was put on a very potent vaginal estrogen from horse hormones but it made my breasts swollen and heavy and felt crampy like I was going to get my period. After doing extensive research I refused to continue with that medication and refused the Clob as well. I asked for Estrace and a less potent steroid and my (long standing older male) gyno hit the roof and copped an angry attitude.
I found a younger female gynecologist connected to a large teaching hospital and my experience was totally different. She listened to my concerns and agreed prescribing Estrace and later compounded Estrace without the chemical additives which were irritating my delicate LS skin. She explained the options of a steroid in consideration of the vaginal atrophy. In addition she referred me to an oncology gynocologist a professor and research fellow as well as clinician. Also a very different experience than my original gynecologist.
The oncologist gyno advised that it was my option as to whether to use a steroids as long as I did not have any itching. He said that without the itching not using a steroid would not effect my overall cancer risk factor. The side effects of the steroid over the years could exacerbate and increase the thinning of the skin (vaginal atrophy) causing tearing, I opted to stick with just the compounded estrogen and go for regular checks at the cancer center every six months so to catch anything early. So far so good. I feel very fortunate.
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Replies to "@andwho Hello there. I have LS. It has been 28 years now since a suspected diagnosis..."
@dougajoi I have an elderly relative suffering from Paget's Disease of the Vulva, not LS, but I am looking for a specialist and some ideas about comfort measures. She used some kind of lotion (not estrace/estradiol) that was supposed to eliminate the lesions, but finally had a radical vulvectomy and the lesions have returned. I would love to get the name of your specialist because her gynecologist/oncologist seems to have no ideas about comfort, let alone how to treat her current status. Her choice is suffering with the lotion, which she describes as "cauterizing," and suffering with the lesions. I can't believe she is expected to endure this. Another surgery is not an option, especially because it didn't help. She was told not to use estradiol, but your post makes me wonder if she needs a second opinion.
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@dougajoi my LS diagnosis came during menopause, went to the doctor for excessive bleeding and that’s what I was diagnosed his frightened look really raised alarms have kind of been on top of things since then the Clara saw cream has brought me to damage skin tearing, etc. I’ve had such a recent flareup with the Laken sclerosis, but I think it was because the cancer is coming back which it has been confirmed this week she’s mentioned estrogen creams would like to hear more on that have never used them have never needed them through menopause just to have always heard bad things about it. What is the benefit to this estrogen cream because the itching is driving me crazy I don’t know if I’m itching from the recent surgery or from the lake in I just know it’s driving me nuts and starting to get extremely painful but now with the new cancer diagnosis time for a reset she is concerned about the lack of control over my precancerous disease, which obviously has resulted in cancer, so yeah, some more on the estrogen please