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Diagnostic confusion

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margaret289
margaret289

Hi All, after believing for the last 5 years that I have LS, I now find out that I have not, but I have a condition which behaves in axactly the same way and is treated in the same way also and may also require biopsying for pre cncerous conditions periodically.  However, there is no label attached to it.  I am feeling really confused now as my GP has referred to it as LS in that time.  

Frankly, this is nuts!  I am therapeutically back to square one, with the consultant I saw this morning asking if I had been tested for thrush and had I changed my washing powder.  She also advised loose fitting trousers etcetera etbloody cetera (sorry feeling extremely frustrated, because I know al this since living with it for 7 years).

Has anyone else had this experience?  It looks like LS can only be accurately confirmed by biopsy, but I was not told of the absence os LS five years ago when first tested and now am told that the treatment regime would have been exactly the same in any case.

0 likes, 22 replies

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  • amy_60504
    amy_60504 margaret289

    Posted

    Hi thats very interesting because ive had my biopsydone and it has been confirmed that i have not got ls but however i still feel there is something wrong but i dnt know which is a bit rubbish as at least i would of known what it was if it was ls. So have they actually told you what you have got?
    • margaret289
      margaret289 amy_60504

      Posted

      Hi Amy, 

      no they are no further forward with actually diagnosing the problem.

      Have a look at Morrell's post.  There are several possibilities, but I think that it would be logical to asume that in post menopausal women (such as myself) low estrogen would be the most likely.

       

    • lorna65
      lorna65 margaret289

      Posted

      You are not alone, I have had all the symptoms of LS   for the last 2 years, but biopsy was Negative, have been on Vagifem ( estrogen ) for 6 months, unfortunately  it hasn't helped.  Some days I get really depressed wondering if this will ever improve,  each day is a constant struggle but  I guess we just have to deal with it
  • Morrell1951
    Morrell1951 margaret289

    Posted

    Hi Margaret, I just Googled 'similar to lichen sclerosis' and found an article in Up to Date called 'Lichen Sclerosis – Beyond the Basics.This section is pertinent:

    Excluding other conditions — Tests may be done to exclude other conditions that could cause symptoms similar to those of lichen sclerosus, such as:

    ●Lichen planus (a skin disease that can also cause itching and fusing of genital skin). Lichen planus can occur together with lichen sclerosus.

    ●Low estrogen level (a lack of the hormone estrogen can rarely cause fusing of genital skin but is often the cause of painful intercourse). (See "Patient information: Vaginal dryness (Beyond the Basics)".)

    ●Vitiligo (a disorder that can cause white skin patches similar to those of lichen sclerosus). Vitiligo can occur together with lichen sclerosus.

    ●Pemphigoid (a blistering skin disorder that also causes scarring of the vulva) is extremely rare.

    ●Hemorrhoids (which can also cause cracks in the skin of the anus)

    The thing is, our main treatment is just anti-inflammatory steroids, so it's not surprising that nothing changes. LS has a name that describes what it looks like. There's no bacterial cause and they 'think' it's an auto-immune disorder, which in itself has limited meaning. That leaves us with treatment of symptoms and prevention of their progression. We can lives healthy lives, which applies to pretty much everything.

    I didn't have a biopsy. Who knows whether I'm official. Clobetasol works pretty well, so I'm good.

    We won't kick you out of the club!wink

    • margaret289
      margaret289 Morrell1951

      Posted

      Hi Morrell, thanks for the response.  It is very useful. i think the low estrogen might be most of the problem, because I think I have suffered with this all my adult life.  Glad I'm not having to 'walk' away from the group as an imposter. That made me smile ;-)
  • bluelady
    bluelady margaret289

    Posted

    Hi margaret - I too was told I had LS, both by my GP and the consultant she referred me to.  I kept a daily log of what was going on down there and what I was using and did loads of research myself.  In the end I wasn't convinced it was LS an asked for a biopsy.  It wasn't LS.  But they have kept me on the register and once a year I go for a check up.  But ... the hospital couldn't find my correct records last time I went and I saw a new lady who said ... So Dear, you have LS then?  and I said, no I haven't - I've had the biopsy and I haven't got it.  My problem lasted around 18 months and the atrophy still happening as we speak.  How manyothers have been wrongly diagnosed I wonder.  My mum had jproblems for years and eventually they said it was dermatitus and she had different creams to me and all is well downbt here now.
    • margaret289
      margaret289 bluelady

      Posted

      Hi Bluelady,

      the thing which is knd of annoying me is that if it is low estrogen, which I suspect, I feel my treatment would have been differently emphasised.

  • Morrell1951
    Morrell1951 margaret289

    Posted

    And there's this from 1996

    Nurse Pract. 1996 Dec;21(12 Pt 1):57-8, 61-2.Lichen sclerosus: early diagnosis is the key to treatment.Hall D.Author information

    Cleveland State University, USA.

    AbstractLichen sclerosus of the vulvar is an often misdiagnosed and chronic gynecologic disease.

  • bluelady
    bluelady margaret289

    Posted

    I also use Vagifem.  On top of this I had the Mureno (???) coil fitted to protect my uterus from cancer etc due to hormones (so they told me).  I also use (excuse spelling... Ouvestin cream).  I use this on the outside and just a little inside very 3/4 days.  My atrophy... well I've lost one labia altogether, my clitorus is fused over and the other labia is shrinking too.  Looks reasonably healthy now - just very different.  I use Yes Oil Lube for sex (brilliant stuff) and that makes sex bearable although some positions we used to do few years back are impossible now.  I also wash in Epiderm which i get from the GP on prescription. Hope this helps.
    • margaret289
      margaret289 bluelady

      Posted

      Thanks that is most helpful.  I think I would be in real emotional trouble if it were not for this online community.

      Thank heavens for the level headed people on this site.

      All the best 

      Margaret

    • annabel01635
      annabel01635 margaret289

      Posted

      Have been reading the above thread with great interest.  I was diagnosed by a gyne having a look, instead of a biopsy about two years ago. However, apart from when I had a bout of thrush a few months ago (of course I assumed it was LS playing up and treated it with even more dermovate) I do not get itching from it or notice white patches. But definitely there has been a big change in architecture and everything looks like its shrinking down there. I'm beginning to think its possible that it is not LS. 

      And, by the way, its great to have one place where we can be so open about our troubles.

      All the best,

      Annabel

    • margaret289
      margaret289 annabel01635

      Posted

      Hi Annabel,

      I do hope that isn't the case, because it will have happened twice.  My concern is that for the past 5 years I've still been regarded (and treated) as if I had confirmed LS.  I asked my doctor about the shrinkage of labia and she said that it could also be due to age (I'm 58, had a hysterectomy in 2007 and must be through the meopause by now).  it is very difficult to know what to do next.  To be thrown back to considering washing powders or if I had urinary leakage (which luckily I do not suffer from) was a bit of a blow.  It felt like the consultant I was seeing had taken a snapshot of me and my life and had conpletely disregarded all my experiences thus far.  Anyway, onward and upward.  i am going to keep going with Dermovate and Double Base gel and lose some weight and generally take  more control over this. I think that is what many of us on this forum feel the need to do.  Thanks for your ideas and info.  This is a very good site.

    • marey
      marey margaret289

      Posted

      I'm impressed with your resolve Margaret. Thank you for saying that ...it has made me feel encouraged too. I have been feeling a bit squeezed out ...it was making me sad and down for having a different perspective. Is there anything that would help you move forward with your new goals?
  • kate207
    kate207 margaret289

    Posted

    Hi. My biopsy was positive for LS so at least I know what I've got, but on the yahoo sitesupport site  there were many people who had the same confusion re. diagnosis as you Margaret. One finding was that  if you have already started the steroids before the biopsy you can get a false negative for Ls when biopsied as the steroid will have put the Ls into remission. Could that have happened to you?
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