1. Community
  2. Women's health
  3. Lichen Sclerosus

LS prognosis

Posted , 11 users are following.

Morrell1951
Morrell1951

I've been coming to the realization after 18 months of treatment that the only treatment our dermatologists and gynaegologists can offer (ultrapotent topical steroids) stop inflammation and open wounds, but they do not stop the forward march of disfigurement in my case. The hardening and tightening of a ring around my vaginal introitus continues. I think after menopause the prognosis is much worse. This review doesn't seem to address this, unless somebody's a better reader of this stuff than I am.

I found this review in the American Journal of Clinical Dermatology, of all studies as of 2012: "Diagnosis and Treatment of Lichen Sclerosus: An Update". Pretty good news for those with early diagnosis who stick with the clobetasol.

"In a descriptive cohort study with a mean follow-up of 66 months, 327 patients (74 girls and 253 women) with vulvar LS have been treated with topical corticosteroids. Clinical signs improved in nearly all patients, but only 22 % of the girls and 23 % of the women showed complete resolution of clinical signs with return to normal skin texture and color. The concept that prepubertal LS resolves at puberty appears not to be true in the majority of patients. Seventy-five percent of girls who develop LS prior to puberty will continue to require maintenance therapy after menarche.

There is a significant risk for women with vulvar LS to develop scarring with loss of vulvar architecture and normal function. Cooper et al. showed in their study of 327 women that a delay in diagnosis of 2 years or less was associated with less scarring at diagnosis. In a second long-term study (mean follow-up 6.2 years), the authors compared the data of 84 fully compliant women with 45 partly compliant women with vulvar LS. Ninety-eight percent of the fully compliant patients achieved complete symptom control, including ability to resume sexual activity without pain. None had disease progression. In partially compliant patients, only 75 % achieved complete symptom control and 35 % experienced progression of disease with scarring and fusion."

2 likes, 39 replies

39 Replies

Prev
  • suzanne00
    suzanne00 Morrell1951

    Posted

    Thanks, Morrell, for starting this discussion. Discouraging and realistic. I wish that we had data on the progression of women diagnosed with this, especially in the menopausal years. What percentage of women with LS experience this severe progression, and what percentage (if any) experience ongoing, complete remission, and how many in between? So worrisome. I'm sorry that Joodie and Hanny have gone through this to this extent. I wish that more women would share their story. What about starting a discussion thread where women fill in their raw data--how long, how much progression, how much sex since dx, etc? We need the information. Do we know if anyone is collecting this information? --Suzanne
    • Morrell1951
      Morrell1951 suzanne00

      Posted

      Alan's 'pinned' topic at the top of this forum was set up for our histories. So far there's only mine. Please fill in yours.
  • deb09833
    deb09833 Morrell1951

    Posted

    I totally agree. All I need my Gyno and dermatogist for are to keep a check and write a script. LS is in the too hard basket.  These past years have been very lonely and isolated with very little nformation coming from the professionals, that I not only pay a small fortune too, but depended on. I am at a loss as to why after all these years and tears that the only thing that has changed is the information I have gleaned from this forum. Thanks for the info!
  • AZM
    AZM Morrell1951

    Posted

    HI Morrell

    I read "the stiff" aas you refer to it and it makes very little seinse - what is the difference between "compliant" and "non compliiant"? All I can tell you in ordinary language is that i am post-menapausal ( 67 years old) and had a thickening and tightening of the introitus. The gynae gave me some relief by removing what she referred to as "the lesions". I appear to be an "a-typical" case of LS asIi have no white patches or any itching. I agree with you that all the doctors can offer us is temporary relief as this disease marches to its own drum and there's not much the doctors can do. I may sound pessimistic but I think the best that can be done is "to keep us comfortable" . Surgery does provide some relief although its pretty painful! 

    • Morrell1951
      Morrell1951 AZM

      Posted

      Compliance sounds like a very bossy term, but it's just med-speak for following the instructions on a prescription.

      Did you have the surgery so you could have sex, or were you so narrow that peeing was becoming a problem?

      I recall so vividly twenty years ago lying on a gurney in a cold tiled hallway outside the O.R. waiting to have a tubal ligation so I could have sex (without becoming pregnant). I had a flash of amazement that I was volunteering to go under the knife so I could have sex. Never again.

    • AZM
      AZM Morrell1951

      Posted

      Hi Morrell, I had no idea I had LS -did not have any idea that it even existed. Only went to see the gynae as my vulva were permanently on fire and sex was painful.Tthe gynae made some mention of removing scarred tissue and lesions and the next thing I knew the results of the biopsy- LS. I had to resort to google and this forum to find out what to do. I was given Dovobet first time round which left me in tears from the pain.I sought a second opinion from another gynae who specializes in vulva diseases. She prescribed Dermovate and did another biopsy. I had candidas as well . I have my moments but am feeling better although I have had to give up Aqua aerobics as the gynae put it " you have a sick skin". One thing I am very fortunate is that I have a very understanding husband  so DEFINITELY no more painful sex.   I have no idea how long I had LS before I was diagnosed as I have suffered with UTI, thrush etc for the past 8 years. At this stage no change in the scuplture yet!

      Really sorry that you are having such a bad time. 

    • Morrell1951
      Morrell1951 AZM

      Posted

      HI AZM,

      We're lucky to have husbands who will let sex go. And men are lucky their equipment hardly ever turns on them like this. I watched a standup comic the other day, joking about marital squabbles. He said women think they can hold sex over men – as if she puts a lock on the fridge door. No problem for him since he has a never-ending sandwich in his pocket. I believe that a lot of women overestimate the importance of physical intimacy to their men. I think many of them would be quite content with DIY orgasms while we're out shopping and snuggles at bedtime.

      "Sick skin" is a good catch phrase. I live in an area with many beautiful clear lakes, but I didn't swim last summer. Not saying I never will if my perineum has stopped tearing for good. I sure wouldn't go into a public swimming pool.

      We've talked about thrush elsewhere here. It appears (and I think I read it in a study) that LS and yeast work together against us. Whether the yeast sprouts in the sore LS flesh or vice-versa, I've had both forever. I do not get thrush when I'm not having sex. Sugar is terrible for both.

      Thanks, but I'm not really suffering – just adjusting to a new outlook. Hanny's managed to get through the worst case scenario of atrophy. And I'm completely confident I won't get cancer there. I know it's possible and we have one woman on here who did get it. But the chances are vastly reduced by keeping it calmed down.

    • suzanne00
      suzanne00 Morrell1951

      Posted

      I think that there's likely a relationship between yeast and LS, and that it's due to the body sending antibodies out to fight the yeast, and in that process it inadvertantly end ups attacking self. Reducing sugar, not being on the birth control pill, taking probiotics, and other measures to reduce yeast infections, may all end up helpful to stop the cycle involved with LS.
    • AZM
      AZM Morrell1951

      Posted

      Hi Morrell I couldn't agree more - sex is not the only way to share those special moments! May'be you could give me some advice ?I don't want to worry my gynae again!! I have been using a smidgen amount of dermovate every evening since 17 October coupled with an estriol 1% vaginal cream for atrophic vaginitis. About 2 weeks ago the gynae said I could try using the Dermovate every second night, but it doesn't work for me - I start tingle burning again half way through the day. I am much more comfortable with the Dermovate every evening, but I don't know for how long i could use it without further damaging the skin . Could you advise ? I know cortisone creams thin the skin.

      Just like you I suffered from thrush when we had sex.!! I have bid sugar good bye and only swim in our pool at home - anything to minimize the risk of a flare-up! 

    • Morrell1951
      Morrell1951 AZM

      Posted

      If it's only been since October, maybe you need it daily for awhile longer. It took six months for my symptoms to mostly stop. Don't worry about thinning the LS-affected skin. It's too thick anyway. The ointment sort of burns off the layer of dead cells on its way to the 'basement' layer, where it does its work on the inflamatory cells. Maybe this is what takes a long time.

      Are you trying to keep urine off it by rinsing after each pee, then slathering on something like Vaseline (or coconust oil, any oil) on as a barrier for next pee? There's plenty we can do as well as use the prescribed drugs.

      And a bath with 1/3 cup of baking soda should help, too.

  • winifred02134
    winifred02134 Morrell1951

    Posted

    Hi , I dont understand the part about compliants l cannot work out where l am in this study . lt seems to me that these studies are just educated guess work , every docter lve seen has a different idea about  how to treat LS, l am now just putting vaseline on at the moment , l had a biopsy about 5 weeks ago , l think because she cut the bad bits away , its cleaned the area and the improvement l,m having now is because of that, of course l cannot chip away at myself forever. l saw a uroligist last week who was well informed about LS ( l told him about this forum , he seemed interested ) he is going to bring a dermatoligist into my treatment , so l will have all 3 branches of docters , so l will see what happens . Where do these reports get their data , l dont think they even understand its only the tip of the iceberg , there are loads of people out there with LS.
    • Morrell1951
      Morrell1951 winifred02134

      Posted

      Win, the key points in the exerpt I pasted here are diagnosis within less than two years and compliant (using enough ultrapotent steroids).

      Which means I was out of luck forty years ago. I'm just lucky I have the slow kind.

    • winifred02134
      winifred02134 Morrell1951

      Posted

      Hi Morrell , l did respond well in the begining to steroid cream so the future may be bearable l went un diognosed for a long time though . This latest flare up was down to stress . Time will tell. I see your husband as the same problem as my daughter , she as had 3 operations and they are as bad as ever not nice for a young women, everybody seems to have something , nobody as a perfect life. X

       

  • Guppy007
    Guppy007 Morrell1951

    Posted

    A lady recently posted on here that her Gyno mentioned that she sees around ten woman a week with L. schlerosus.  My initial thoughts was that she is either exaggerating, or that there is something terribly wrong, and its become more prevalent!!  in which case surely doctors raise a red flag, or something? I mean, if they are seeing a rise in cases its a clear indication that something is seriously wrong, and I cant help but wonder if they do anything about that.

    I agree with Joodie that the fusing seems to occur when we are not looking, it sneaks up on you!  I was never aware of anything really amiss, obviously I knew I had LS but nothing felt sore or sticky, it looked fine until it didn't look fine, which came as a shock, its true I had not been applying the cream regularly which explains why fusing occurred, but not the fact that there was no obvious signs, no soreness, no redness, nada! and this and this alone makes this such a seriously insidious auto immune disorder.

    I have a theory that it starts off on the outside of your vagina and then works its way inside, until  in some cases surgery is needed....and it never stops until your in remission, and starts up again when your not.

     

    • Morrell1951
      Morrell1951 Guppy007

      Posted

      Guppy, I think it has everything to do with the baby boomers being past menopause  – we're a huge chunk of the population. And we complain, where women a hundred years ago didn't. They had LS named in the nineteenth century.

      I know there are a large number of LS sufferers who also have thyroid trouble (and who blame the toxic world we live in and believe there are ways to remove the poisons), but that doesn't explain ordinary post-menopausal cases or lifelong cases like me. I do think the world has been relatively poisonous since the industrial revolution, but we can't fix that.

      My husband has nasal polyps that give him something like a permanent head cold. He's finally used steroid spray for six months and it worked after three or four months till he caught an actual cold. Now the spray won't penetrate and he's as bad as ever. As with LS, surgery is a last resort and, as with LS, the polyps will re-grow.

      I wouldn't trade LS for his condition and he feels the same way about LS. Inflammatory disorders suck. He has osteoarthritis, too. I'd rather have LS that bad knees, thanks very much.

      So, it sucks, but it could be worse. (I know some of us have all of the above and more. My heart goes out to you.)

Back to top
Prev

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.