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Causes of Lichen Sclerosus?

Posted , 33 users are following.

marey
marey

What do you think caused your condition? 

Any ideas, theories, inklings? A complete brainstorm opportunity.... 

4 likes, 122 replies

122 Replies

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  • ChrissieM
    ChrissieM marey

    Posted

    The only things I can think of in my case are

    1. A link with auto-immune disease. I have had ulcerative colitis, from which thankfully I recovered with medication and, apart from one or two minor flare-ups, have been clear for several years.

    2. Over-enthusiastic washing - I used to use soap and get a really good lather going which was quite difficult to rinse off, then vigorous towelling dry.

    I was in my 60s when I developed LS, not a specially stressful time so can't blame that, have no thyroid problems, all gynae problems behind me (I had a total hysterectomy aged 50), never had a Tendency to get thrush or cystitis, so a mystery apart from those 2 things.

    • Morrell1951
      Morrell1951 ChrissieM

      Posted

      Chrissie, I did the over-enthusiastic sudsing/scrubbing for a decade after I saw the atrophy (but didn't mention it to a doctor). *headsmack*
    • marey
      marey ChrissieM

      Posted

      hello chrissieM

      thank you for your response. very interesting ....any chance of a link with the hysterectomy and lowered oestrogen?

      so glad you have healed your inflammatory bowel disease...was it a wide range of medications?

      oh the washing....sorry to hear about that. is your LS fairly settled at the moment? 

    • ChrissieM
      ChrissieM marey

      Posted

      Hi Marey

      I don't think I can make a link with the hysterectomy, as it was 18 years after the op when the LS appeared. I don't think I had had LS for long before diagnosis either, probably only a few months before the itching and skin splitting brought me to my doctor, who is a very 'with it' young woman and recognised it immediately. I only have it very mildly and use betnovate and cetra ben, which work for me.

      The IBD was solved with steroid enemas and asacol tablets, the latter I take all the time and I think I have settled on the right dose to keep it at bay now. Thankfully only the left descending colon was affected, so I've been very lucky.

      LS is okay - it was only a fairly small area at the front and also between the vagina and anus, pale skin but not completely white. It responded to betnovate, which I still use once a week and more often if I develop an itch. The only area that itches is around the clitoris, which is gradually disappearing due to fusing. Before I developed this I never used to look at my nether regions, so I don't know how much has disappeared, but probably quite a lot - it happens so gradually you don't notice. But most of the time I have no symptoms at all - hot weather is the most likely to bring on an itch!

      After reading about Dr Goldstein's thoughts on deep inflammation I'm now a bit worried - could there be something going on I don't know about? 

  • Phoebe604
    Phoebe604 marey

    Posted

    No one seems to know what causes LS.  I've had it about 7 years, nothing helps much.   
    • marey
      marey Phoebe604

      Posted

      but what do you think caused it ...in your case? xxxxxxxx
  • suedm
    suedm marey

    Posted

    Hi Marey I had x2 caesarians,(bifurcated uterus) a burst abdomen(I am a bleeder- red hair- no deep tension sutures), and infected wounds, antibiotics, endometritis for 1 year then 18months following the caesars. It was either abstenence or tie the tubes- the tubes were chosen. Pylonephritis. Some years later ???IBS  but was treated  medically with Danol for ovarian cyst - the adhesions too bad to be opened up again! Virtually celibate as ex has MS asymptomatic re LS until The Itch!
    • marey
      marey suedm

      Posted

      oh sue...thats a real trial you've been through....burst abdomen...gosh thats one of the few real real medical emergencies. I'm so sorry to hear what has happened and what you've been through! You are a stalwart!! was the burst abdomen  post ceaser and due to an infected wound? Did I understand correctly? Then two separate bouts of endometriosis?

      pylonephritis....so lets think...something got stuck that was being excreted and infection resulted? Any ideas of what may have been in passage?

      Then you were treated for ovarian cyst....but you think it might have been IBS? Do you still have symptoms of IBS?

      You have adhesions...going back to consequences of the medical emergency? Which may have been due to the absence of DTS's? Did your intestines tumble out? Floating them in normal saline is the only thing that will keep them apart prior to the op. Or separate them if the process has started due to drying out.  what was the period of delay between  the op and the incident?

      Your LS was silent....leading to loss of architecture(?) before you developed the itch. It was the itch which due your attention to the problem? I remember you saying its difficult for you to go swimming because of water rushing in...that was you?

      Sorry about your ex...does he still have MS?

      Are you enjoying your celibacy? Or do you wish to see some action?

      Do you still get symptoms due to the adhesions? I  completely understand your reasons for tubal ligation but do you think the loss of hormones may have contributed to LS?

    • marey
      marey suedm

      Posted

      SueDM, I was looking up about adhesions and found a lovely gentle site by googling...she interviews a physio who offers a complete portfolio of her treatments...very encouraging. 
    • suedm
      suedm marey

      Posted

      Hi Marey, i have been away from the site for a couple of weeks - so i havent been able to reply to you.

      Both Ceasars were emergencies the first because  of foetal shoch- then i was shocked - interesting ride to theatre - being catherised tummy monitored ng tube - i had just had a meal - o2 and venepuncture, all riding on my bed which was being raced thro the corridors as there wasnt time to transfer me to a trolley. Navel to mons incision low anaetheits so i woke up too early and had to be put back under - a tad uncomfortable!

      got out of bed 2 hours later and whoosh..couldnt go back to theatre tho had elastoplast corset - i am allergic to that si skin peeled off every dressing so ended up with x2 breast binders trying to keep things together. Had endmetreitis not 'osis - Splendid adhesions from that

      Pyloneph caused by son sitting on ureters in utero low grade UTI flared up into full blow kidney inflamation- (i had kidney stones at 17)Next pregnancy wasnt quite so dramatic but nearly so On antibiotics more than a year

      No IBS- twas a short lived problem

      Ex still has MS

      I had been on HRT for years had bleeding polyp so STUPID gynae changed me from my normal HRT to 1/20 strength at a time of ultra high stress in my life ( op to remove )Went on holiday for 3 months in Oz came back with The Itch

      I parted my adhesions when sneezing - for years it was  (expletive deleted) at every sneeze - now all seems to be OK

       

    • marey
      marey suedm

      Posted

      welcome back sue...hope you enjoyed your holiday!

      gosh your trials have been considerable.....good news about the adhesions tho.

      do you think that the sudden drop in oestrogen levels caused/contributed to LS in your case?

  • ChrissieM
    ChrissieM marey

    Edited

    That's interesting, I am (or was!) a redhead with fair skin. I wonder if other LS sufferers are fair-skinned?
    • suzanne00
      suzanne00 ChrissieM

      Posted

      Hi Chrissie--If you are surveying--dark hair and olive skin here.  --Suzanne
    • g30rg313
      g30rg313 suzanne00

      Posted

      If we're still trying for a connection? I'm left handed
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