Dilemma

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My 26 year old daughter has been suffering from a very itchy backside ofr quite a while.  She suffers from depression and anxiety and has mild aspergers.  I am concerned that she has inheritted LS, but I really do not want to take her aside and give her the details, because I know that she will be devastated.  If, as seems likely, she has inheritted this nuisance and it follows the same pattern as it did with me, it will ot become a major problem until the menopause.  The quiestion is how do I put it to her in a non-frightening way.  She has already been prescribed mildish steroid cream for the area involved, but as yet has no problem with the vulva etcetera.  Any advice would be gratefully received.

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  • Posted

    Margaret, she does not necessarily have LS. She could be eating something (coffee does it to me) that's irritating her on its way out. That would be a good first line of approach.

    Failing that, you would be doing her a great favour to tell her about your own LS. If you and I had been diagnosed within two years of onset, LS might have been driven right down by prompt and careful treatment. This is the key point in the piece of the review of research I posted under LS prognosis the other day. It's not necesaarily a lifelong sentence or a menopause sentence. And if she has it now, ignoring it does not mean it will stay mild until menopause. She would likely have it more like I did (from age 22). I had a daughter, I'd be telling her. I told my son, just in case he had it – he's both anxious/depressed and celibate at the moment. The anxiety only adds to it, so she needs double motivation to use cognitive behavior therapy or mindfulness or whatever to try to find some access to calmness.

     

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    • Posted

      Thanks Morrell, i hoped you particularly might see this and respond.  I think you're right; I'll try and steer her onto dietary change then if that ha no benefit, I will go all out and tell that she might need to be checked out for LS.  She has exactly the same symptoms I had at her age and beyond, but, as you rightly say, she might not stay a mild case until she is my age and I owe it to her to inform her.
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    • Posted

      Margaret, I'm probably stating the insultingly obvious, but I presume she's been checked for all the more simple causes first, such as piles or, dare I suggest it, threadworms? Also, an itchy bum can be self perpetuating, as one tends to become obsessive about washing and wiping, and thus making the skin more irritated. I'd only start thinking about LS when everything else has been eliminated.
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    • Posted

      Hi Kate, thanks for responding.  She has been seeing the GP and is using precription steroid cream, so she does not need chivvying to do that, but I am not sure that all GPs here in the UK are aware of LS and its presentation.  Many treat for thrush.  Also my suspicion is that irritated skin from a variety of different causes might lead on to skin breakdown and the development of LS later in life.
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    • Posted

      I'd be very interested in reading the post you referenced about LS not necessarily being a lifelong sentence or a menopause sentence. I am always looking at research for LS and other stuff I've got and I'm continuously being told (as I am sure we all are) that LS is for life (of course we already know it doesn't have to be menopause related).  Mine was diagnosed within weeks of onset. Thanks.
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  • Posted

    Hi Margaret,

    I read your post with interest and wanted to respond. I was unaware that LS could be inherited but given that everyone has both parents DNA I would say there would be a 50/50% chance which could go either way.  There may be a possibility that your daughter's itchiness is caused by other factors rather than assuming its LS. As much as it is uncomfortable, embarrassing and terrifying she needs to be correctly examined by a doctor and the symptoms she is experiencing need to be advised to the doctor.  Sometimes itchiness can relate to haemorrhoids there are lots of online advice about this condition and it does cause reoccuring itchiness particularly after a bowel motion. This condition is easily treatable.  Another condition which causes itchiness there is a skin dermatitis condition which is also treatable with cream often steriod.  The only real way to see if the itchiness is indeed LS is visual examination by a local doctor or a Dermatologist who if it is LS can actually see the white dots or white patches, if seen he would recommended a biopsy but that is optional.  I have had a biopsy in both areas (confirmed early stages of LS) I am in menopause and even though I was a nervous wreck prior to having it done, they only take very minimal skin so small that you wouldn't even beable to tell any part of the skin was missing. I'm over the worrying of it now don't think much of it now just apply the Diprosone OV Ointment that I was prescribed and it keeps it under control and in remission.  The worst part of the biopsy are of course the numbing injections at the sites which are not pleasant but is same as going to the dentist and getting numbing injections into the gum prior to having a filling, once done, you feel nothing afterwards.  What I would say to your daughter is explain what you have which 'could be' inherited but not always so she is aware but also tell her that itchiness in that specific area could be caused by a number of reasons which could be only minor and that to get a confirmed diagnosis she needs to consider being examined by a doctor, doctors see lots of butts and it only takes a few minutes to take a look and than its all over.  Your daughter could mention that there is a family history of LS, not many doctors know what LS is surprisingly, but they need to know what the visible appearance of LS is (white patches/dots) etc., so that they can check for that at the time she is examined.  If the doctor suspects its haemorroids then he will just prescribe a cream which will quickly relieve the symptoms.  If it is suspected that she has some form of skin dermatitis he will just prescribe a cream also, if he sees white patches or dots to indicate LS then he should provide her with a referral to see a skin specialist or Dermatologist for further investigation.  I would not automatically assume that she has LS but tell her there are many women who have same conditions all over the world, its nothing to worry about but she needs to be examined, the sooner the diagnosis, the early the treatment and lets hope that its only something minor. Good luck.

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    • Posted

      Hi Sarah, thank you for replying so fully. I think that irritation and the need to avoid certain foods are common in my family.  My mother (she died at the age of 95 earlier this year) said that she had sometimes scratched herself until she bled in the urinogenital area.  This indicates a common problem in our family.  My daughter is seeing the doctor and is being treated with steroid ointments, but I think I will have to tey and see if she should suggest LS to her doctor.
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  • Posted

    Hi Margaret,

    Funny you say that, I seem to have later in life an extremely low tolerance for foods that I use to be fine with previously but of which now cause abdominal and bowel problems. I have looked into Lactose intolerance and Coeliac Disease also, problem is we don't know what exactly is going into the foods we eat.  That is so sad about your mother, a great age, but obviously LS was very ignored in the elderly not uncommon.  I had symptoms of thrush for over 30 yrs, did not get anywhere with gynaecologists, had a lot of gynaecological issues including Endometriosis twice as a result of years of heavy menstruation since 17 y.o.. Since menopause, everything has lessened except the itchiness both inside and out.  Vagifem has worked wonders for me with internal itchiness since menopause and I use the steroid ointment front and back for LS.  In my case, after continual frustration with doctors and gynaecologists over 20+ yr period, all it took was for me to do my own research online to find a specialist at a Vulvadynia / Vulva Clinic to do a 10min examination to find LS.  Not even a pap smear this year by an experienced Gyno failed to pick it up.  I know my mother who is in her early 80s has many medical conditions and has severe instial cystitis, I don't think she was ever screened for LS.  My understanding is that this LS is a chronic skin disease which requires life long treatment of steroids to keep it in remission and at bay.  I really hope your daughter's symptoms are something else but if you want to know more about LS, there is a Lichen Sclerosus Yahoo group online which has the largest depository of information in the world and the largest database of sufferers majority females, lots of valuable information.

     

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  • Posted

    Study on LS and heredity - just found it today.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3843921/
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    • Posted

      I agree.  it's one of the more interesting articles.  The first time 5 saw a consultent I was prescribed Tacrolimus. it did not good though.  However, I note that vitamin e was also prescribed in this study.  May be that is something we should try.

       

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