Atrophy and pelvic discomfort with Lichens Sclerosus
Posted , 16 users are following.
I'm writing because I have some symptoms that don't seem to come up on here so I'm not sure if they are uncommon LS symptoms or something else. I'd like to do some research but am not sure where to turn. I believe self education is important but there is that balance between exhaustive reading of everything and walking away from the research to try have some time where this disorder isn't consuming all my time and energy, because as you know, we aren't supposed to get stressed out. I want to put this out to this amazing group to see if you can send me in a direction to help narrow down my research instead of spending hours trying to sort through everything out there. The doctors only have what I tell the to go on and what they see and I'm getting some answers that are inconclusive. To be fair I am early in my treatment and have another referral to see in about a month so we simply may not be there.
I am recently diagnosed and now am quite sure that I have had this all my adult life. I thought I was well educated on sexual health matters, which is why I was surprised (and angry) at this diagnosis this late. Generally it showed up as splitting in my 20's to which I was told "don't have such active sex" and then would go away for years at a time. When I started perimenopause in full force (47-50) is when symptoms started. I had itching and a tingling in my vulva. I get oral cold sores and the tingling I feel on my vulva is similar to tingling that signals a cold sore is on its way. Generally the itching wasn't terrible, instead annoying. I had an irritation (tingling) focused on my clitoris which made me feel like I was permanently aroused. Diagnosis: "it's hormones" and "you've left a sexless partnership you are simply rediscovering sex". (A lot of truth to the latter!) I had a few years of high sexual activity while things were atrophying. I'm now postmenopausal at 51.
My labia minora were always small and now are non existent. I believe my clitoris is disappearing. Not being covered over, simply shrinking. Atrophying. Where other LS patients have skin growth that closes over their vaginal opening I cannot see how that would happen to me. My labia majora seem to be receding. I have recently been given estrogen which may restore some plump and perhaps this receding I see is simply 'deflated' labia. I'm not too worked up about this. What is there, is what I've got.
Since starting the steroid creme, my skin is returning to normal appearance. I had finally calmed my mind down from my initial reaction and worry that my clitoris would melt away overnight. Then last weekend, I attempted to have intercourse which flared everything up. For the first time I had plaques. It was terrible burning, papercut like splits on my clitoris. I believe it's calming down so quickly because of the information I've learned and implemented from this forum. Thank-you all!
The other issue I have is a strange feeling in my pelvis. It's not cramping, but rather like an irritation. From what I know of lichens sclerosus this makes no sense (but I don't know everything!) I have gotten it in my mind that it is the irritation that I feel on my vulva when things are active, simply inside my pelvis. I have recently had a pelvic ultrasound which I believe was normal. I've since fired the doctor who sent me there (for many reasons but not the ultrasound) and my new doc is getting the results so hopefully soon I will know something.
I also have self diagnosed lichens planus inside my mouth. I'm attempting to get a diagnosis on this.
So my questions to you are:
- atrophy. Is this something that is separate from lichens slcerosus or something that just not a lot of people get? Treatment tips specific to atrophy?
- the pelvic tingling. Anyone else have this? Thoughts on what to research?
And thanks again for all your contributions and the things I've picked up from you.
3 likes, 54 replies
justine89448 ElleF
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kathryn07219 ElleF
Posted
Atrophy: Yes this is LS and my outer labia have "deflated" (very good description) and hang like a pair of tights on a washing line and the inner labia have all but disappeared. So far as I am aware, there isn't any treatment. Your feeling of "paper cuts" is exactly how I described how I was feeling - mad itchy but painful at the same time.
Pelvic tingling: not exactly although I think the LS has affected my urethra and when I feel as though I need to pee - I really do need to pee and right away! This could sometimes be described as a tingling/fuzzy feeling in my pelvic area but soon translates into an urgent need to pee. From what I have read in medical articles, LS can indeed travel up the ureter.
Do you have any involvement of the anus? I had this, which was very unpleasant, but it seems to be brought under control by Dermovate. The whole thing flares up when the weather is hot so I have to apply the Dermovate to all areas twice a week to try and keep it at bay.
dani2590 kathryn07219
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kathleen65757 dani2590
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ElleF kathryn07219
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There were times when it took me much longer to pee than before and thre would be a tingly feeling. It seems to have gone back to normal (or have I simply become accustomed to the longer time?). I was unclear in my research if LS could affect the urethra or not, however I believe my research said yes, even though my doctor said no.
dani2590 kathleen65757
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ali.catt ElleF
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I'm 37 and have been suffering this for a year and a half. I haven't got a diagnosis yet but gp thinks it's LS. I think it could be lichen planus though due to the lesions I have and that it seems to be internal too.
The tingling is there for me too, and a kind of pressure in my pelvis. I feel like it's inside but can't quite work out if it's actually internal or referring from the vulva. I also have burning pain, vulval skin tearing, internal (vaginal) pain.
No atrophy for me, just the lining of my vulva and vagina being eroded.
What an horrific disease.
kathleen65757 ali.catt
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dani2590 ali.catt
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Chrisy dani2590
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ali.catt dani2590
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Nothing to take it away completely but both bi-carb soda in the bath and the steroid ointment help. I've also been using this tea-tree oil spray that I had for after waxing to be extremely helpful in relieving pain by lubricating the vulva, as simply walking makes the skin tear at the moment.
dani2590 Chrisy
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Chrisy dani2590
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jules1100 ElleF
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I have the same questions regarding atrophy. I'm in my 20s and have LS which has caused the skin to thin. I have read that sometimes LS doesn't present with atrophy. I have also read that the atrophy isn't reversible with LS so I'm wondering if there's anything that can be done. I'm using estrogen topically every day. I question how much it's doing though.
What does atrophy look like? Is the skin smooth and pink or does it appear red and inflamed and more friable? I have no idea what to look for.
ElleF jules1100
Posted
I can't speak for anyone else, but the bits of mine that I believe are atrophying look normal, they are simply getting smaller - shrinking.
Are you also using a steroid creme in addition to the estrogen?
Morrell1951 jules1100
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ChrissyC ElleF
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I've used Dermovate ointment since first being diagnosed together with Aqueous cream as all round moisturiser, barrier etc. I know it has helped other people experience relief from itching and white labia returning to pink. I never itched ( lucky in that I know) so it didn't help me with that and it didn't stop the inexorable retreat of my labia minora and it ISN'T stopping the shrinking of my clitoris. Which I agree otherwise looks completely normal. So sometimes I wonder why I bother applying it at all. I was told maintenance applications were for life but really it isn't maintaining ANYthing for me.