Lichen Schlerosis in Vulva area
Posted , 5 users are following.
Good Morning ladies. just something i would like to share with all of u. i saw a specialist yesterday regarding my skin condition.
If you are still sexually active the best way to treat this would be stem cells. if you not sexually active they start with cortisone cream called Dovate to be applied once a day before bedtime. In the morning you apply normal coconut oil on the whole area.
LS is 99% a long life skin decease but can be controlled. It is normal that your vulva changes as in lips become part of the outer skin . If you are still in the beginning stages the use of the coconut oil prevents the skin from becoming sticky and lips and clitoris wont disappear but they cannot reappear once they are gone.
Hope this can help some of you.
Regards
Ann
1 like, 7 replies
beverly52803 Ann01
Posted
Ann, I had to look back to see your history. You are in Cape Town and were seen by a gyn who wasn't familiar with LS and were waiting to see a specialist, correct?
By stem cells was the doctor referring to Platelet Rich Plasma? There are stem cells within it, but it is not strictly stem cells. Not sure why having to be sexually active would have anything to do with having the procedure. I spent a good part of the last 5 months trying to find an MD in my area (in the US) who performs PRP for LS. PRP injections have been used for 20 years for sports injuries. I found mostly spas who give what they call the O-shot (which is PRP) for improved sexual function and they are not knowledgeable re LS . Apparently the protocol is different.
There are women who post here who have managed to get PRP for LS, but I found only two doctors and both had certain requirements. One said my condition was not severe enough and another said to have it done not in combination with laser would be a waste of money.
Did your doctor actually refer to the lips as "becoming sticky"? That is an odd description. I think what happens is considered scaring although it looks rather like melting in photos I have seen. In my case the skin just seems to be disappearing.
Almost all of us use a steroid cream, but not every night. Is that what you were told to do? Typically it's applied nightly for several weeks, then less until you are using it once or twice a week. Depending on the severity or a flare up some have to use it twice a day.
Re coconut oil, many of us use it as a moisturizer because the condition creates a lot of dryness. My gyn recommended it although I was already using it for atrophy.
I see in an older post you were using premarin. Are you still? Is the steroid Dermovate or Dovate and has this helped get the LS under control? I know you were very uncomfortable. Glad you finally got to see a specialist.
Ann01 beverly52803
Posted
hi Beverley. no its Dovate. i will use this for 4 weeks now until i see her again. and the coconut oil daily.
we did not discuss the procedure of stem cells as she did say the procedure is a dramatic next step that would be considered if the pasient is still sexually active which i am unfortunately not. my husband is not able to be sexually active.
yes my gyni referred to LS being sticky and therefore the skin (lips) and clit becomes part of your skin. also the opening whole becomes smaller
the sad news was that LS is a life long skin desease but it can be controlled and managed.
sarb73328 Ann01
Posted
I have often wondered whether diligent moisturising with different oils and ointments actually helps prevent fusing. if the skin is 'sticky' as you say, then it makes sense that oiling it will stop it sticking to itself but as I understand it the fusing that happens comes from within and is part of the auto immune reaction; the body working against itself. I also dont understand how it can be considered scarring unless you have split or cut the skin and it has healed. Like you, Beverly, my architecture just seems to be disappearing or 'melting'. And I have never experienced split skin. All cases are different and we have to find our own way to manage our particular LS.
beverly52803 sarb73328
Posted
sarb, have you looked into using Tacrolimus? As my gyn left the group practice and has not opened her own (as I was told she would ) I decided to try the dermatology route. That entailed finding one that handled gyn issues, but I finally did & an opening came up so the wait wasn't as long as expected.
Had been following the gyn's steroid/estradiol protocol faithfully, but the buzzing returned and would not stop for 2 months despite daily use of Clob, hence my interest in a new approach.
I have been using the Tac ointment for just over two weeks now. Have had only a few days of slight symptoms. Snappy Cat said it took a month for the ointment to take effect for her. It's called an immune modulator (I think) and is supposed to affect the skin at a cellular level. Am using it weekdays then Clob on the weekend. Got my fingers crossed. Follow up appt in 2 weeks.
I've gone from being very leery of using anything to being open to almost anything. Am very interested in PRP injections but that was like finding the Holy Grail. Maybe the gyn world will catch up to that eventually.
I've reintroduced gluten to my diet as that had no effect at all. Back to gluten light; have been light on sugar for many years. What I have noticed was drinking wine recently brought on slight buzzing. Did twice so maybe not a coincidence, but never had that happen before. What a quandary this all is!
sarb73328 beverly52803
Posted
Beverly - a quandary indeed. No have not thought about Tacrolimus although I have read up on it. I will ask my dermatologist when I next see her in January. At the moment I believe I am in remission as I have had no flares or changes for some months. My buzzing is still there but really minimal and I find I can tune it out. I still religiously use borax, emuaid, coconut oil, then for variation: castor oil, calendula ointment, aloe vera gel, cetraben ointment and epiderm to wash, along with Betnovate steroid once or twice a week and oestrogen ointment three times a week.
I have no desire to try PRP or laser at this time, but would not rule it out if things got worse. My diet doesn't seem to affect things at all (and I couldn't give up wine!), but stress does.
Please let me know how you get on with the Tacrolimus - I would be interested to hear if your buzzing stops and of any other improvements you get with it.
Guest sarb73328
Posted
Sarb- For me, the tac was used because a month of clob made my skin red as it may have done with others, here. Tac lifted most of the redness although there is still a little and the skin became sore after one month on the clob at which point I stopped. Diet switch-ups have made no difference and neither has high doses of Vit D. The borax burned me but coconut oil, Eucerin and sometimes borage oil help. Am definitely going to ask new gyn next week about PRP, laser, and anything else she will answer. She's too young,, I worry and has not seen enough but the only older gyns here are old men whose bedside manner is like a Sherman tank. Who knows. Am at the end of my rope.
laurie73352 Ann01
Posted
Clobetasol is what works the best for me when I have a flare up, used 2 times per day. Once under control I use it two times a week. I bath in Epson salts every other night and use borax 1/8 of a cup twice weekly in the bath. I don't use perfume soaps of any kind. My specialist said the use of other creams would not work, for me he is right. Changing your diet also helps, no dairy, limit sugar and limit gluten. I was told that no matter what type of lazer etc that I could get done, chances are the disease will come back, in other words don't bother. He also said the only lubricant to use during sex is coconut oil, all over the counter stuff is a waste of money.