Atrophy in Lichen Sclerosis
Posted , 37 users are following.
I've had LS about 2 years. I'm really lucky when I read the experiences of others as I don't have any irritation and don't really know I've got it on a day to day basis. My inner labia simply developed white edges. Consequently I haven't bothered with the cream I was prescribed. What is worrying me is how my inner lips are receding. Everything I can find on line seems to be about coping and soothing the itch which is understandable as it must be horrific. But I can find nothing about the atrophy part of LS and I'm really freaking out now. What happens if it keeps going until there is nothing left? Will my body continue to atrophise (if there is such a word) into me if you see what I mean?! I'd just be grateful to hear of someone else that this has happened or is happening to.
4 likes, 164 replies
Spindles
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It's a pity that there isn't more information about this condition. We're forever being told about checking our breasts or having smear tests but this never gets mentioned so women must be going about blissfully unaware that they may have a condition that could turn out to be quite serious if not regularly checked. I have made an appointment to see a doctor next week so he can have a look, rather embarrassing but has to be done! I hope this is of some help.
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ChrissyC
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Spindles I don't think the Sudafed will have caused your fusion, its just that fusion happens for some people. Like you I now have only outer lips just by a different route. You are so right about more information needed out there. Every woman that I've spoken to has had no idea that such a thing existed, as didn't I before I got it.
I DO count myself lucky to not have the irritation or (so far) fusion to what's left of me. Nevertheless I am embarrassed by what I now look like and consequently my previously active sex life with my husband of 30 years has come to an abrupt halt. He is supportive and wonderful! But it is so sad and I believe the effect on me mentally is far worse than (again so far) the physical.
With every good wish to you both X
vicki04
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Guest
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Sorry to hear you are so distressed, I tried a cream called Perrins Blend you can read about it on the Internet. When I first used it it was amazing the big red whells went away,my specialst was amazed it did come back, but I feel it was not for me , but who knows it might work for you. Take care.
vicki04
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Does anyone else on here have the patches on their bodies as I have mentioned in my first post ?
margaret289
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There seems to be a hereditary element to LS. I've been having problems for about 4 years and the only thing which has helped significantly is Dermovate cream - the strongest steroid cream available, the use of which doesn't fill me with confidence. Chatting to my new GP recently he said that at a conference recently all experts had come to the conclusion that this was the only really effective treatment. There is just so little information regarding sufferers and possible patterns of habits/lifestyles etcetera. Someone mentioned above that they could no longer eat oranges for instance and I believe that my penchant for Earl Grey tea has caused me some discomfort (citric acid and the bergamot oil in Earl Grey is related so I've heard). This does not mean that it causes the condition, but may be an irritant.
I broached the subject with my 94 year old mother and she said that she wasn't aware that he had any problems but that sometimes she had scratched herself to the point of bleeding (this leads me to believe that it is a condition which is coming to the fore as something which been regarded as natural ageing, and which is actually very common but should be dealt with rather than shrugged off).
I was was a close friend of my GP before she retired and she told me that out of the group women who were in the waiting room who were waiting to see her, MOST would be seeing her for this condition.
If it is of any comfort and can alleviate some of the anxiety I was certainly feeling, I believe this condition is actually quite common. Certainly it is in this area. I think we do all need to compare some notes as to age, diet, weight, anxiety itself, problems with alimentary tract, where we live and how we get our water etcetera etcetera. I have IBS for example, drink loads of tea.
Only if we can see patterns can we understand if a change of lifestyle might affect the condition and it does not seem that anyone has done much research on this.
Does anyone think the same way as I do?
vicki04 I don't have similar patches, but I remember my aunt having some below her breasts and this may be part of the hereditary thing.. There may be some problem with your skin's reaction to sweat.
One thing I have found relieves any discomfort apart from steroids, is Salcura Intensive Skin Therapy spray. It does not cure anything, but seems to take your mind off it, which for me is a big thing.
Could everyone quizz their doctors about how many of their patients are presenting with LS and is there any common factor thy've noticed between them
best wishes and try not to be too disheartened
bluelady
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pui345 bluelady
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Emma_84
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I'm also concerned about atrophy. One thing I'd like to know is if scarring only occurs if you scratch the area, or does it happen on it's own? I have mild LS but this is playing on my mind a lot. I'm finding myself looking at the area all the time and trying to check for scarring - not entirely healthy I know"! ChrissyC - have you tried using Emu Oil? It's pretty good as a complement to your steriod cream because it moisturises very deeply xx
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sybel95077 Guest
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margaret289 sybel95077
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you've come across an old but unteresting thread. There are a couple of things to add from my previous post.
i wash every time I go to the loo with a little bicarb of soda in the water.
I'm finding coconut oil very beneficial after I wash
Dermovate ointment is much better that the cream and shold be applied after a hot bath and drying the skin well for it to be most effective.
As to the food thing - I'm not really sure. There are certain things I avoid - particularly Earl Grey tea which makes me itch like crazy, but most other things I tolerate. This condition has been recognised for well over a hundred years, so it is nothing modern that has caused it, although stress of modern living is very detrimental to our health generally and this condition specifically.
Good luck
Margaret
LS_sufferer
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Mine started around my back passage initially which was causing chronic constipation, I was even sent for Botox injections into my sphincter muscle so that I was able to pass a bowel motion. Which worked for a short while. My Doctor at the time noticed that I had very heavy scarring around the area at the time, but know more was ever said or mentioned, I just put it down to tearing due to the constipation, I was no doubt wrong.
So here I am 3 years on, awaiting an appointment for the Vulva clinic, using Dermovate & Emu oil like everyone else. Which is helping, the itching has finally stopped & i'm managing to sleep again. I've been coping quite well up until the latter part of last week & now i'm beginning to feel pretty fed up. I feel so dirty all the time even tho' I shower twice a day. I was having a very healthy relationship with my partner until I found out exactly what the problem is & now I just don't want him to touch me because of this un-clean feeling. It's not affected me in the bedroom department until now. My partner has been so good, he had a "blip" 2 weeks ago but has been my absolute rock since. Which is a godsend because he is also my best friend too.
I haven't discussed it with any friends or family because I just feel I can't, so finding this web-site & everyone's post's has helped me. When my Doctor told me it's quite rare I was mortified & felt so alone. But this has been quite a tonic to know i'm not alone, & maybe it's actually more common than everyone including the medical profession are aware of.
Thanks for all the info that you have posted, it has been a massive help especially to all us "newbies" out there that are frightened out of our wits. T xx Keep up the good work girl's.