lichen sclerosus re hormones

Posted , 2 users are following.

I was diagnosed at 58, have been on HRT since I had a hysterectomy at 38. I stopped taking HRT at 55 and that is when my troubles seemed to start. Although my LS doesn't seem to be as bad as some of the ladies on here, sometimes forgot I have it. I use the dermovate and wash with aqueous cream and it seems to be bearable. I was told by my GP that it is possible it is to do with hormone changes in the body, don't forget I have been or seem to be still...... going through the menopause, still get a few night sweats. And as nobody seems to know why we get it..... I did ask but was not given a positive answer, plus I don't like my consultant I have to see, he is very abrupt which doesn't help when there are so many questions to ask. I don't feel comfortable enough to ask him anything. Having you ladies to talk to and to read other messages is very uplifting, don't feel alone with the condition and don't feel like a freak.

0 likes, 9 replies

9 Replies

  • Posted

    Hallo Ladygaga!

    You are not the first lady to say that when they stopped taking HRT after a number of years they got LS. this does seem to point to a hormonal connection to LS but this has not been scientifically proven!!

    I take Vagifem which is estrogen only and find it helps the vulval tissue. Taking the estrogen hormone this way insures that the hormone is absorbed into the area where I need it.

    You did not say how your LS was diagnosed - clinically or biopsy).

    I think a lot of the consulttants come across as being abrupt because they simply do not have the knowledge to answer our questions. This has been my experience. Have you been to a dermotologist or a gynaecologist. I found the dermotologist to be better informed on the subject.

    You should not feel uncomfortable asking questions but as you have discovered we have to educate ourselves and learn from each other.

    Many reasons have been given for getting LS amongst them hormonal or auto-immune (the body attacks itself because it sees itself as a foreign object>

    You are lucky that you do not suffer from severe symptoms but keep using your dermovate as a steroid - your aqueus as a wash - and I find an ointment PALADIN very good for soothing the affected area. You can get this ointment from **** Chin up


    [color=red:2c9cfdc90f][size=9:2c9cfdc90f][b:2c9cfdc90f][i:2c9cfdc90f](Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

    If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.) [/i:2c9cfdc90f][/b:2c9cfdc90f][/size:2c9cfdc90f][/color:2c9cfdc90f]

  • Posted

    I was diagnosed by biopsy, but my GP had a good idea as to what it was when she had a look. Everyone always said being on HRT was good for you, haha, if only we had known this might have happened because of it....... sometimes....... do we need a scientific answer ? our own experiences should count for something. I have not seen anyone other than my consultant, and have not been asked or told anything other than ... you have lichen sclerosus...........and more or less told it's okay it's not cancer. Keep using the cream...............Still have to look on the bright side, suppose there are worse things to get...........aren't there ? 8)
  • Posted

    Lady gaga

    Are you suggesting that when you came off HRT you got LS??

    Other women regret having stopped HRT because when they stopped their hormon levels dropped and LS was the result. Had they remained on the HRT they may not have got LS

  • Posted

    Hi there...there are different views about this problem..Apparently some researchers say that re-introducing hormones will not make any difference and certainly will not get rid of LS...Its more likely to be the shock to your system after hormonal changes have occured, rather than the loss of a particular hormone. Shock and neurosis can cause shingles etc., and this is probably the same thing... As it is an auto-immune condition our bodies act in a completely irresponsible way and fight when they think our systems are in trouble, so possible the fact that a large part of our makeup has been taken away eg the hormones , the shock has charged the immune system into reacting....If it was due to hormones themselves the age group would only be post menopausal or younger hysterctomy ladies, as it is, children get LS and people from their teens also and Men, remember.......I think it is the auto-immune rather than the hormones their selves that are the problem. I have found that almost all of the ladies we have read or talked to are auto-immune...

    Are you are prone to, or have had other auto-immune condtions ....

    eg.,Asthma,exzema,psoriasis,thyroid,endometriosis,arthritis,ibs,crones,utricaria etc., Its an on going problem and loads of questions need to be answered to satisfy us...They are not there yet..........xx

  • Posted

    Hi just wanted to add to your debate I have never had hrt or taken the pill (last time with this was 26 years ago )so dont think it can now count was told in january this year that I had this LS all though I feel the problem was their for about 3 years before. I have suffered with allergies all my life and had to have a double knee replacement when I was 50 as I had arthritus really bad due in my mind to two many hep b injection for my work I was unable to make the antibodies so my gp surgery kept giving me this really proved to be a waste of time I also get now really bad cold sores that last forever and no potions or anti virus creams can stop any one else whith this problem
  • Posted


    I stopped taking HRT and for about 3 years after still suffered with bad night sweats, eventually they eased off, but even now very occassionally get one. I have never been a poorly person, no allergies, only to penicillin, but nothing else, maybe a connection who knows? my GP did say it could be due to the menopause, but no one seems to have a precise answer as to why we get this. We all seem to have different problems associated with this. I was born with a twisted rib cage and pelvis and never suffered any problems, but recently I have noticed that my body has to work harder to cope with the distortion, ( I have to say that this is hereditary, although I have been the worst affected, and the only female) could my body be fighting the effects of this ?

  • Posted

    Hi Lady gaga, Its hard to say whether your body is fighting the distortion with immune problems, anything is possible. I never had Exzema or IBS until i had LSwhich i have had now over 2 1/2 years. I had utricaria pygmentosa (Thats an auto-immune skin complaint), for 25years and it had left brown spot marks on my legs and chest and upper arms which when rubbed would raise hives on each mark - horrible they were, but since the LS arrived the spots have gone and the medics told me they never would!! :shock: . So what does one believe..... My Mom had rhumatoid arthritis and thyroid but my arthritis is the nobbly joint hereditory one and osteo, not rhumatoid... I get so confused with it all. Took me over 4years to stop sweating after hrt was taken away after 13 years ...Ok now though......Its like ,with auto-immune ,you have a condition, and then your body gets fed up with it after a time and goes on to something else...My liver function was up the creek for a few years now since the LS its almost never know girls, one day you may not have LS anymore (no cure at present) but at what cost with the next thing sad fed up......Mal
  • Posted


    someone mentioned shingles being due to neurosis. could you explain please. I suffer from shingles but thought it to be the result of the stress of ls. any cure or special tonic i should take.

  • Posted

    Shingles is usually caused by all sorts of different traumas and stresses and nervous problems.... It depends on the individual...The stress and upset and shock of your LS diagnosis could have triggered. x

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.