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What possible past history caused LS to start?

Posted , 18 users are following.

sarb73328
sarb73328

I am wondering how many of us have a clue as to why we got LS in the first place. The medical profession don't know what causes it, but could we help find it? 

When I was 60, I had a smear test showing slight abnormality (ironically it would have been my last routine one) and HPV presence. Gynae advised a 'loop' procedure to cut away the affected part of my cervix. I was also told at the time that my cervix had atrophied and was quite closed. About 2 weeks after this procedure I started to itch, was examined again but nothing untoward was found. 4 years later with constant itching/irritation I finally got a diagnosis of LS but only after fusing had occurred. During that 4 years I had a hysteroscopy which was clear and also another smear which showed no HPV. All through this time I was dealing with unwell parents and 2 years ago was particularly stressful for me as I was caring for my mother. 

Also, in my teens and early 20s I had recurring thrush and one bout of vaginal warts.

I now think the invasion of the loop surgery and then following examinations triggered LS which may well have been lying in wait anyway. And possibly more of a trigger than surgery,  the stress in 2016 which I believe caused my fusing to increase.

HPV doesn't appear to be part of the cause of LS and as I understand it, lives in most of us and normally our immune system deals with it. If your immune system is at a weak point it can affect you and cause VIN or VAIN.

If LS is an auto-immune disease and you have had a diagnosis of HPV in the past, might this mean that your immune system went  into overdrive to counter the HPV and then continued to attack that area of your body? My point being if you have a diagnosis of HPV, perhaps doctors should be looking at ways of improving your immune system at that point.

Any thoughts ladies? I am interested to hear what others think 'caused' their LS to start if you have any idea at all? 

3 likes, 39 replies

39 Replies

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  • Nancy_K_B
    Nancy_K_B sarb73328

    Posted

    OH GOSH, Sarb! 

    oh indeed all of us, yes there is great research on the psychological contributions to physical disease. I read years ago with very great  interest the work of Dr. Ryke Geerd Hamer his discovery of the correlation between his own sudden onset of cancer after his only son/child was murdered by a stray bullet of a spoiled young prince shooting willy-nilly off the coast of Italy. He did years of brain research to follow up on his hunch. 

    HOWEVER, when I combine my thoughts on that, even looking back many many years to my childhood (I'm 72)... and I take every bit of hurtful experiences I still don't come up with an explanation for WHY any of those lesser light psycho-spiritual offences ( that i have already been aware of) didn't "cause" this outbreak NOW?   

    But what i have uncovered is that I apparently have had a couple AUTO-IMMUNE issues for years that were never uncovered. GOT IT? Let's not around blaming ourselves.  We don't need to blame our doctors either - BUT, now that we know better we DO need to go around and EDUCATE our own doctors.  

    I don't think I can state often enough that VITAMIN D deficiency appears to be the root cause of autoimmune diseases... and going further back I've recently found that LEAKY GUT SYNDROME is behind even that! 

    I discovered also yesterday that a Doctor in California started the VITAMIN D COUNCIL all the way back in  2003 by current Medical Director John J Cannell, MD. He believed that there were likely bad consequences in getting so little sun exposure. This non-profit has been doing evidence based research on the role of Vitamin D ever since.  

    I can tell you that I for one don't get any appreciative sun - I THOUGHT I did at least in the spring and summer when I work in the garden a couple hours a day  but I don't love heat so I really don't the heat of summer and forget about winter... none of us do. NONE of us live at the equator or live in short shorts.  

    • Jeepers
      Jeepers Nancy_K_B

      Posted

      Hi Nancy. Re vitamin D,  "they" do say half the world's population does not get enough. Even dark skinned people in sunny countries suffer as their bodies are not programmed to best absorb  it .

      Personally I think it is a very good idea for us LS sufferers to get our bloods checked and if necessary prescriptions or approvals  for vit D. It can't harm even if it doesn't cure our LS.

       Alas I have to take a daily thiazide which is contra-indicated so recommend you good people check with your docs before taking any big doses.

       

  • Jeepers
    Jeepers sarb73328

    Posted

    This makes no sense in the light of what I have read about when other people first got their LS but......I will tell you.

    I first got mine around 14 years ago I had never heard of it and tracked it down on the internet. I went to see my doc who examined me and was amazed as she had never come across it before.

    She checked it out on her computer and agreed with my diagnosis and i went to see a consultant . Meantime my doc had asked me to go back in one year so I did. She then said I was the first case she had come across but in the year since then she had seen a dozen more cases!

    So I always wonder what it was, in my area, that triggered this "outbreak" at this time.

     As I say it makes no sense as many of you good people had it long before and new cases arise all the time, all over the world yet it does seem like a strange co-incidence to me.

    I wondered about every cause from something in the air, including birds,  to something in the water, or something local that we had started eating.

    Another lady on an American forum said she was in an African village for six months where nearly all of the women had it and she was sure she had contracted hers there from insect bites. She was an intelligent lady who I am sure had heard of fgm btw. Then I read of a small country area in Turkey where there was a concentration of it. 

    ....and yet there is a strong correlation re hormonal changes being involved, and stress, also other auto-immune diseases, so I think it is a series of damaging events which combine to make us ready victims for LS.

    To sum up, I haven't a clue.

    It's just a shame nobody kept world wide  statistics on it

     

    • Bridge_of_Sighs
      Bridge_of_Sighs Jeepers

      Posted

      Hi Jeepers

      With your doctor, I wonder if she had actually come across it before but didn't recognise it until you drew her attention to it? She was probably wondering why she had so many cases of yeast/herpes/eczema/hypochondria... and all the other things that LS sufferers have been misdiagnosed with.

      Specialists say that there is a small genetic link, but it's not a huge correlation, ie. if your mum had it there's an increased chance of a few percent that you will get it, but it's not a done deal. Then again, my GP who comes from a skin background says it's so common that most women will get it at some point in their lives. So that's confusing. I do feel that the incidences and clusters may have more to do with recognition and diagnosis than actual occurrence. Think how many of us wen't undiagnosed for years...?

      Maybe there was a very good doctor in Turkey who had it in the family and therefore was aware? Maybe there was a female doctor who didn't brush 'women's problems under the carpet?' These things are always more complicated then they seem on the surface.

  • dani8979
    dani8979 sarb73328

    Posted

    I have hypothyroidism for some time now and have been at high risk of getting diabetes....I got it all right and LS came with it....all autoimmune diseases. An under active thyroid also................HPV has nothing to do with it.
  • martyanner
    martyanner sarb73328

    Posted

    I just joined group.  I've been reading some of the comments but so far I haven't seen anyone mention having to wear a pad constantly for incontinence.  I have had to wear one for years during the day but seems like when I went to wearing them 24 hours I got LS.  Also the brand Always were the worst, as was baby powder.  I'm not sure what brought it on but I too have low thyroid and have taken meds for it over 10 years.  I eat sugar more than I should.  I see a lot of comments on these similarities.  Can people comment on having to wear a pad please.  Maybe I need to start a thread with this question.  I'll spend more time later learning the ropes.  Good site.  I'm grateful to find

    • dani8979
      dani8979 martyanner

      Posted

      Pads do help with incontinence....but the chaffing causes problems when LS is active and flares up, also dries the area, there is a lot of rubbing against the pad. Not easy....but must use them if you need them, try to find the softest you can. 
    • hanny32508
      hanny32508 martyanner

      Posted

      Martyanner - Always brand is the worst indeed.  There is a chemical in these pads that aggrevate LS.  Left behind by the bleaching process.  It is called dioxin.  You are right to avoid them.  Back to cotton inlays that can be washed.
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