Atrophy in Lichen Sclerosis

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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.

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  • Posted

    I realise this reply is quite a few months after the question but I hope it will be of help. I had redness and sometimes soreness but no intense itching like other people have experienced. I went to the doctor and she said she thought it was lichen sclerosis and I had to see a hospital consultant. He took a few biopsies which I thought would settle it but when I saw him later he also said the THOUGHT it was LS. I had been given some cream to rub on but it only made it worse so I just used Sudacrem when needed. The thing I didn't realise was that it made my "bits" fuse together, meaning down each side not across. I now only have outer lips,my inner ones having fused to the outer ones. Apparently it can be much worse than that as you can end up with a hole that's not very big and have to use things to stretch it but thankfully I haven't got to that stage and hope I never will. Were you told that you need to get it checked out every year as women with LS affecting the vulva are at increased risk for developing squamous cell skin cancer?

    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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  • Posted

    Hi, I have just read your comments, I also have skin atrophy around my vagina. My specialist put me on Ovestin Hormone cream which helps to restore the skin, making it not so thin,I also use steroid cream, a little each day to keep the LS in check, Ido feel sorry for people with the irratation like you I have never had that, I count myself very lucky. I wish you well and good luck!!!
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  • Posted

    Hello Spindles and Mary Rose. Many thanks for replying. A year on and I now have no inner lips at all. They have not fused just simply disappeared. I still worry what will happen if the condition carries on trying to recede now there is nothing left. I use steroid cream although I'm not really sure why as I have no irritation to sooth and it hasn't exactly stopped things happening. I do realise I have to keep an eye on things to watch for cancer.

    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

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  • Posted

    Hi i am new to this page and so pleased that I have found it as I feel so alone, i can relate to all of what you are saying I have had this horrible condition for over three year( but suspect that I have had it for over 20 years!!! ) I also have horrible patches over my body that none of the creams seem to help, I have tried emu oil and propilis cream as well as all the creams that my gp has prescribed, the patches on my body are getting worse and more are appearing and spreading, I feel like a freaksad they started under my breast and around my side where I think underwired bras may have dug in( I now wear bras with now seams or wires) they patches seem to start were there is constant friction or pressure. has any one else got these patches as I can't find anything on the internt. I see the specialist at the hospital again next week but she only seems to be concerned about anychanges in the genital area as this is classed as pre cancerous but these patches are just as distressing and seem to be taken over my body .
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  • Posted

    Hi Vicki04,

    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.

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  • Posted

    Hi mary Rose thankyou for your reply I will look into the cream you have mentioned.

    Does anyone else on here have the patches on their bodies as I have mentioned in my first post ?

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  • Posted

    Hi everyone, it is good to have found this forum. I am 58 years old/rather over weight (3 or so stone) live in western Britain on the coast.

    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

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  • Posted

    Hi late to join the discussion but have been active on other threads here to do with LS. I too don't really have any itching, but one of my inner lips has disappeared completely, the other one is now disappearing too. My clitoris is almost non-existent - I thinks it's there but it's playing hide and seek. My aunty has this. I believe my mum has it too and has only just started talking a bout it after I've told her all that I've been going through. She has the itch and is very red, although she isn't suffering with atrophy. I had a biopsy about 7 half weeks ago and am still waiting the results! Whilst I hear what some of you are saying about the increased risk of cancer, |I did read somewhere that it's not the LS that causes the cancer, it's the scarring from itching and ulcers. Anyone else read this?
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    • Posted

      Even if your clit is non existent, do you have any sensation down there? My doctor said its because of the thickening of the skin thats why I dont have any sensation down there rolleyes
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  • Posted

    Hi All, yes I have read that the scarring is the thing that may cause cancer, I also believe that it is very rare and not the norm. Apart from having LS I also have exzema with LS, but still no irretation, the hormone cream does help repair the skin atrophy, I also use E45 shower cream for inbetween my legs and Sanex 0% for the rest of my body, I have found this does control the beast!!!
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  • Posted

    Hi guys,

    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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  • Posted

    Hi Everyone, I am 65 and have had LS for about 4yrs.I think the scarring is caused after a very bad attack, I don't think scratching helps, but maybe not wholey responsible.
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    • Posted

      I agree Mary Rose. I was recently diagnosed but i think ive had LS for a few years with it relapsing and recurring. Mt specialist said the scarring and thickening happens during relapse. Scratching can cause tears abd abrasions which can cause scarring, however scarring is part of the disease whether you itch or not. I've read that remiving sugar, aspartame and all chemicals in the home, wearing 100% cotyon panties, removing GMO foods from the diet can cure LS. Fir itching I am alternating lidocaine and camphor. I use the O24 camohor wipes. It burns for a few minutes but relieves the itching gir several hours.
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    • Posted

      Hi Sybel,

      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

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  • Posted

    Morning Ladies, I'm 46 and have being diagnosed in the last month with LS, I've been "Itching" & "scratching" for about 3 years & got to the point that I was not going to leave my Doctors surgery until I had a proper answer for my symptoms.

    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.

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