Posted , 8 users are following.
how progressed does this disease have to be to be diagnosed by biopsy? If it isn't bad enough are there enough skin changes to know that it's LS vs. things that may look similar?
0 likes, 14 replies
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Okpeeps jared8423
Posted
I have posted on here a new thread last week but it has never come through. It was just something that has worked for me. I read on here or somewhere about viramin D capsules and magnesium capsules ... I was in major flare up after having winter flu bug. I was ready to try anything. Within two days of taking one of each a day the itch has gone the flare up has disappeared and it’s kuch healthier down there. I never use soap down there and only wear cotton underwear. Drinking loads of water now too instead of too much coffee. I’m only saying it wirjed for me. It might not have the same result for everybody but I thought I’d share.
That’s a full week since I started these capsules and the difference is night and day.
brenda12750 Okpeeps
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I don't know if this will work for you or not. But I have been washing down there with Dial soap and it really has helped with the redness and also the itching. So you can try this and see if it helps you. I have been A lot better since I have been using it.
george_32756 jared8423
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susan39248 jared8423
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Hi Jared, from what i can gather from my experience, the tell tale sign is the whitening of the skin around the vulval area and the perineum. My GP diagnosed based on that alone and she categorically said a biopsy wasn't needed.
Interesting that Vitamin D and magnesium are helping you OKpeeps. It is common for people with thyroid problems ( lots of LS patients are also hypothyroid) to have inadequate vit d and I personally supplement vit d and Magnesium but not consistently so I can't really comment on whether they have helped or not. I am not medically trained but i have read that vit d acts like a hormone in the body.
People talk about stress making it worse, which is a condition where you have raised cortisol. Excess cortisol, especially if it goes on a long time, can impact your other hormones by reducing the amount of DHEA which your body makes. This situation is worse once you reach menopause. It also has an effect on insulin which I can't call to mind completely. I feel sure that in the future they will discover that hormone imbalance is a factor in LS.
jared8423 susan39248
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jared8423 susan39248
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charlotte95599 jared8423
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charlotte95599 jared8423
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susan39248 charlotte95599
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Yes, I've heard the the location is critical and also the Dr :-) Are you in the states? Do you have the white areas of skin? I am about to see a specialist here in UK, privately, who specialises in vulval skin conditions so I hope to get some more info from her about it all. My GP, who is also my Gynae Dr has confused the hell out of me. As I am postmenopause and on blood thinners i can't go down the hormone route, illogical though it is.
well all the best with it all :-)
charlotte95599 susan39248
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Yes I am in the states. I never had the white patches ever so maybe thats why the 1st Dr was confused. I had never heard of LS at that time so i had no idea what was going on. The Dr thought it was Herpes because i had these lesions all over and i was red and inflamed all over. I now think I just had a Dr that was incompetant for the issue. Since seeing my nee Doc and doing Mona Lisa i think its getting under control besides this place and all the good advise to try.
susan39248 charlotte95599
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So I saw a dermotologist, who specialises in vulval conditions, privately ( i.e. I paid cash, for those in the States) and she has told me some interesting things today.
Firstly, it is recommended that a biopsy is done before treatment with steroids commences because the LS 'melts' once you get the strong stuff on it and then it makes the diagnosis more difficult. I can't remember what she said verbatim but that was the gist of it and her word, 'melts'.
Secondly, there is a connection to estrogen imbalance and I believe she said, lack of estrogen but she may have been keeping her explanation simple. To me, this means looking at hormone imbalance should be part of the diagnostic procedure, which it isn't, probably because its simple to just get us to put steroids on our bits, for the rest of our lives. Also, in my view, its a bit like the thyroid issue, they are not going to do anything different for you if you have Hashimoto's anti-bodies so they don't bother testing for it. In fact, they don't test for the important things at all because again, they are not going to prescribe anything different, although there are alternatives that suit a lot of people better than the standard drug. I think this generalises across the board in the Medical profession.
So, the good news, for me is the dermatologist thinks the diagnosis was incorrect, there are no signs I have had LS at all and that for my age, everything looks very good. New diagnosis, eczema- which I have had for years on other parts of my body. I am so relieved that I can stop worrying about this now but will continue to try and support the LS community if appropriate.
If there is anyone in the UK who would like the Dr's name, please pm me. Best £220 I have ever spent.
Best wishes :-)
wumi_62775 susan39248
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Thanks Susan,
Please can you advise your dermatologists name and business address. Thanks. I just got diagnosed by the GP yesterday and I'm yet to see a specialist.
Guppy007 jared8423
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Hi there,
If you go to your regular doctor he won't have a clue and will send you for a biopsy.
If you go to a Gynaecologist it's likely he won't have a clue either and will send you for a biopsy.
If you go to a dermatologist it is likely they won't have a clue and will do a biopsy.
If you go to a vulva clinic and see a professional he will be able to tell at a glance more often than not that you have LS and give you a visual diagnosis. Most women have the telltale white plaques of skin, and if not they have a long list of other ailments all related to LS, like sores, tiny cuts, rashes, problems with the clitoris itching, loss of labia minora, fusing... the list is endless.
There is actually something called the 'Koebner phenomenon' which means cutting into the skin for biopsies actually can make things much much worse.
I feel annoyed when I read how trusting women are around doctors that often have less idea then we do and therefore immediately suggest a biopsy.
jared8423 Guppy007
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