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New to LS - start here

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Emis_Moderator
Emis_Moderator

Below are various resources for Lichen Sclerosus from leaflets to useful web sites and recommended discussions. You may wish to reply to this discussion as a way of introducing yourself to other forum members and giving a brief history of your situation.

There is a patient leaflet on LS here which also has related tabs with more information, support groups etc.

https://patient.info/health/lichen-sclerosus-leaflet

Below are other useful websites:

http://www.lichensclerosus.net/ - Information to help manage LS

http://www.lichensclerosustreatment.com/ - webinar from Dr Goldstein. Lichen Sclerosus The Unspoken Pain

http://caredownthere.com.au/ CareDownThere is written by a team of Australian Health Professionals with special expertise in treating vulval disease.

http://lichensclerosus.org/ The Association for Lichen Sclerosus and Vulval Health

Includes a page of Men only discussion - http://lichensclerosus.org/men-only-2/

http://www.bssvd.org/ British Society for the Study of Vulval Disease

This includes a "Find a clinic" service. The full list is here:http://www.bssvd.org/images/stories/documents/database%20of%20members%20of%20vulval%20service%20edited.pdf

Discussion on users' thoughts on causes of LS

https://patient.info/forums/discuss/causes-of-lichen-sclerosus--271583

Other discussion groups that may have relevant discussions to LS:

https://patient.info/forums/discuss/browse/alternative-and-complementary-medicine-3763

https://patient.info/forums/discuss/browse/autoimmune-disorders-3827

39 likes, 367 replies

367 Replies

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  • t1992
    t1992 Emis_Moderator

    Posted

    Believe I have had LS for 13 years, Dr at hospital said white patch was due to bad birth, I knew it wasnt even then, was given Trimovate and have been using that ever since - it has been managable with the Trimovate but at the moment having a bad flare up so am going to ask my GP for referal to a vulva clinic, am trying to find one myself so I can point her in right direction.  My history is very similar to most (after readying other posts) suffered for years with thrush, I never use any soap on any of my body nowadays, wash my hair over the bath, wear only white cotton underwear.  This is such a horrid thing as you have to be so vigilant with it all the time, it dictates every aspect of your life, what you eat, wear, at the moment I am finding it hard to sit for long periods - its also had a massive effect on my marriage. I find it also a lonely disease to have cos if you had any other illness you would chat about it whereas I never mention it as its in such a personal area and unless you suffer from it its so hard to get over to others just how horrible it is.
    • groky
      groky t1992

      Posted

      So sorry you're having a hard time of it. Thank God for this forum so we can share and get support.
    • t1992
      t1992 groky

      Posted

      Thanks, this forum has given me so many insights already and it helps knowing your not that 'weird' 
  • Lama22
    Lama22 Emis_Moderator

    Posted

    Many thanks for this. I was diagnosed with LS about 2 years ago when I was in a new relationship. I'm 62 now and previously widowed. I had to tell my new partner and was so worried he would think I was 'unclean'. I didn't know anything about LS and he didnt either. My GP diagnosed me and didn't suggest a specialist referral. Just gave me steroid cream and said to keep examining myself. I've been back since and asked her to check me as I wasn't sure what I was looking for

    I seem to have more tenderness near the anus where there is a particular spot that feels tight and sore but I have no symptoms at the moment so am not using the cream. Is that right? Does it ever just 'go away'?

    Can it be made worse by sex? We haven't had sex for a few weeks as just had a hip replacement.

  • lesile
    lesile Emis_Moderator

    Posted

    So glad I found this forum. I was diagnosed initially 15 years ago when I was 45. I have periods when it is controlled but I do have flare ups when it is very painful. It is such a lonely illness as not many health professionals know much about it. I have rheumatoid arthritis and when I told them that I had LS the response was "wow never met anybody with that before". The treatment has not changed much in 15 years I am using Clobestol, Gynest cream . Looking back I can see similiarities with other people on this forum. I had an epiostomy with both children. I was diagnosed with thrush from the age of 25 and have found intercourse painful since I was in my 30s. I always thought I was at fault that it was painful, Doctors no help and basically get on with it. I have been married 38 years so I am lucky that my husband has learnt to be very patient as intercourse is off the agenda. I would be interested to know if other peple have lost their libido over the years and how they improved this.

    I have looked at the help pages and look forward to trying the oils and other self help tips to try and help further.

    • lizziewizzie
      lizziewizzie lesile

      Posted

      hi lesile

      i'm new here too so welcome!

      i suspected having a problem some time ago and did some reading...i think there are newer strategies out there.

      look forward to seeing you on the forum...where you can respond to other uestions and also head up your own topic.

      best liz

  • polly33788
    polly33788 Emis_Moderator

    Posted

    Hi I was newly diagnosed with LS by my GP today. Not surprised, I have suffered from other similar auto immune stuff like eczema, psoriasis and aloplecia before, and I had already researched my symptoms. My big concern is that the steroid my GP wants me to have isn't available in any pharmacies in London. She is trying to track something down. In the meantime, I'm going cold turkey - and it is driving me nuts! Before diagnosis I tried Sudocrem, Yes lube and Epaderm emollient ointment but none of these relieves the pain...am I missing something simple?
    • Morrell1951
      Morrell1951 polly33788

      Posted

      Hi Polly, sorry you're part of this group, but you've come to the right place. Because you mention Yes lube, I'm thinking painful sex is your main poroblem right now. If you continue having friction-intensive sex while you're flared up, the LS will only get worse. Please watch Dr. Goldstein's presentation, linked at the top of this topic. Hope you get your prescription soon. The presentation tells you how to get the most from it.
    • polly33788
      polly33788 Morrell1951

      Posted

      sorry hit the reply button too early, no I have tried using Yes lube for extra rehydration for normal day to day stuff - no sex! Also switched to skirts cotton pants etc but no relief from stabbing pains. They're worse at night but have finally got a script from my GP so fingers crossed.
    • Morrell1951
      Morrell1951 polly33788

      Posted

      Ok, I was just hoping there was low-hanging fruit. But no, it comes back to stress management. I was a hard-core Buddhist practitioner for twelve years, so I think highly of Mindfulness-Based Stress Reduction for the non-religious. Myself, now – I garden and craft. And recently chose to live alone.
    • polly33788
      polly33788 Morrell1951

      Posted

      Always helpful to know that I am not alone with this. To be honest since I have been diagnosed and I have started to learn the treatment regimes the LS has felt a lot less freaky and I'm feeling able to manage it better. Maybe the steroid is also kicking in! I am generally quite good with managing pain, but a bit more TM/ mindfulness is always good too. Thanks for the support - really appreciated.
    • lizziewizzie
      lizziewizzie polly33788

      Posted

      hi polly

      my vote was for your progress with mindfulness and management...not your ref to steroid which is a red herring...you can do just as well without that i'm finding....just wanting to clarify what i was voting for in your comment and wishing you continued progress in halting this vulval deterioration which we're sufering from. i think its down to nutrient deficiency...not a shortage of clob!!

    • Morrell1951
      Morrell1951 lizziewizzie

      Posted

      Lizzie, if you feel strongly that clobetasol is not the basis of LS treatment, since this thread is the 'start here' thread I think it's fair that I suggest you look up LS under Alternative and Complementary Medicine. Ultra-potent topical corticosteroid ointment or Tacrolimus ointment are the two basic treatments, as long as there's no cure. There's no reason to fuss about side effects since we're using an incredibly miniscule amount twice a week after start-up. We talk about supplementary things to try, but we don't generally scare the newly diagnosed off using the prescription they'll get if they're lucky enough to be diagnosed by a doctor who knows about LS. Many don't. The damage happens too fast to abandon the two drugs that will slow down the flaring cycle and prevent scarring.

       

    • lizziewizzie
      lizziewizzie Morrell1951

      Posted

      Oh goodness me...I think you may have misunderstood....or I expressed myself badly. No offence was intended!  I do however stand by my minor comment which simply emphasizes the mind over matter element of this condition !!

      Newcomers will find they have a choice.....after trying out the steroid either for a while or not at all which is great. I worked that out for myself and of course I'd like others to realise this too. I take it you're committed to the steroid? That's very interesting and your choice as well ofcourse. I didn't mention side effects.

      Folk aren't going to be put off by having options. I would suggest they'd be more put off by the notion that there's only one way to handle this or any other kind of dogma.

      As to what has CAUSED this condition...its obviously not a shortage of clobetasol or tacrolimus. That's all. Perhaps now you can appreciate where I'm coming from now?  .... and I'm sure you get it! ie perhaps its nutrient deficiencies?

      Further analysis and consideration about the causes is important...as another member stated - perhaps we can work this out for ourselves. Likely otherwise we'll all be dead before the med profession comes up with something! And it is our issue...

      So to engage with you positively ...may I ask what you think the cause of LS was ...in your case? This is largely what I'm here to explore ...cos i'm sure as heckfire not putting up with this...neither should you I would suggest. I'm against complacency...but had no intention of stepping on your toes. Lets take care though since its easy to think we've got it sussed when in fact none of us has and we're all struggling in this together... !!

      Best wishes liz

    • Morrell1951
      Morrell1951 lizziewizzie

      Posted

      I think everyone from the Boomers on has grown up in a poisoned world, filled with anxiety. Researchers have a 'suitcase word' – auto-immune disorder – for these wacky ways our bodies attack themselves. Inflammation is the key symptom. I treated my psoriasis with topical steroids as little as possible for thirty years, then went cold turkey, determined to grin and bear it. But when a psoriasis flare-up is over, my skin is like new. LS flare-ups cause permanent disfigurement. I already can't have sex any more because the LS has reduced my architecture to a minimum. I'm using tacrolimus hoping to stem the onslaught so I can pee in another decade without needing surgery. Sure, I think maybe diet plays some part – I eat very healthy food.

      My harshest advice is that I believe stress and the friction of sex are the worst things for LS. I had my two kids by having painful sex (in a stressful marriage), the only kind of sex I've had for forty years.

      If I'd had a diagnosis when I was young and a prescription, maybe I would have used my tiny pea-sized glob of clob twice a week and refused sex when I was uncomfortable. Then maybe now I'd be able to stay open to love. I just don't want young women to live my life. So, I say, use your ointment if it's working and tell your doctor if it isn't. Manage your stress, eat well, and say no when it hurts.

    • lizziewizzie
      lizziewizzie Morrell1951

      Posted

      Those all sound like good tips...which is all we can offer rather than actual directions such as that 'you must take a steroid'. To order folks or silence others is beyond our entitlement here surely ?...though of course we can all get a bit bossy over our strongly held convictions!!   But how would you feel if in the years to come its discovered that all steroids were detrimental or that they should have only been used in the short term?

      I suggest caution and open sharing of what we individually find to work. I had had  a feeling to avoid grains, gluten in particular, and so was grateful to find that going for just eating 'real food' seems to work for other women here and on other sites. What we eat is so fundamental as to be not an 'alternative' but rathermore a way of life...especially if we can avoid GM food. Genetically modified. Are we agreed over that? It doesn't matter if we do disagree of course but I don't think any one or other voice should dominate. So I'm sorry if I pressed your button over a preference for the steroid I certainly didn't mean to do that as It was in the context of clarifying that my vote was for having confidence in the mind over matter thing, taking out the 'poisons' as you so aptly describe modern substances, and going for nutrient density. I am even finding that Paleo - whilst having been a great stepping stone for me - may not continue to be the essential regime I thought it was to become... since I'm looking more at the nutrient density of vegetables such as kale spinach and other green veg which are actually quite protein rich...but of course its the micro nutrients that we are needing. So my theory is that the cause of the modern 'suitcase' ...like it good term thanks!!....of autoimmumunity is simply due to nutrient deficiencies...and yes I'd like to crusade this to all the lovely women here...including you to help get us otta here!!

      Friends???????????

    • Morrell1951
      Morrell1951 lizziewizzie

      Posted

      Nutrient density is a good approach. Interesting that you're kind of over the paleo thing, which a number of people here have put an awful lot of stock in.

      The reason I kind of pounced on your skip-the-steroid-ointment strategy is I've read so many panicky posts by recently diagnosed women who are badly flared-up and fusing quickly and also freaking out about cortisone-style side effects. They're usually very relieved to understand about the drugs, which calms them down so the beneficial mind-body connection can kick in.

      How's your LS?

    • lizziewizzie
      lizziewizzie Morrell1951

      Posted

      thanks morrell!

      that's a good point....I suppose initially the steroid could help to calm things down. on the other hand there do seem to be a number of options. Well i'm all for that.

      Yes I am moving away from Paleo but on the basis of having taken in its principles....which I do think are sound and based in science and testing actually from the 80's so the intestinal permeability theory has been around a while...yet GP's over here...thats MD's with you (assuming you have the same problem with lack of take up and application by medical doctors of all this research? - bad really I mean if you went to a garage and they failed to fix your car you wouldn't be that keen to pay them. Think we need to revert to the chinese principles ..if they still apply? Whereby you only pay your doc when you're well!!)

      So to answer your question ...I'm currently looking at plant substitutes for animal collagen and other healing factors present in bone broth....to heal the gut. I'm looking at raw cabbage (ok it sounds very challenging but mixed with other veg and presented as smoothies ...it might work)  meantime my bowels have become my priority. The LS seems calm at the mo but I have some clob which I barely opened to hand should nothing else work...and I am looking at an ointment which kathleen recommends. I also want to get some witch hazel  and the raw aloe vera gel that renee talks about. I have the bicarb but haven't found a way to conveniently put it on....tho like your suggestion of a make shift sitz bath and I may even get one.

      Very glad to be in dialogue about all aspects of this condition!

    • Morrell1951
      Morrell1951 lizziewizzie

      Posted

      I just squat over a little handwashing basin in the bathtub and splash.

      Cabbage is good. I eat gallons of cabbage soup with apple cider vinegar and a little brown sugar to make it borscht. Tomato paste (what's the nutrient everyone's hot on now?) and lots of onions, garlic and celery.

      Anyway, I've always believed that if you take care of your bowels, everything will fall into place. But if we can't manage our emotions, all bets are off. That's more important. Now that I'm alone again and content I can drink two cups of coffee a day. And 10 ounces of red wine. I've lost five pounds in two months without even trying because I'm not comfort-eating and I'm busy doing my favourite things.

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