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New to site, LS, live in Cape Town

Posted , 10 users are following.

LeahRSA
LeahRSA

Hi,

I am 38 & live in Cape Town, South Africa. I had 3 1/2 years of fertility and now have 2 beautiful boys who are 5 1/2 & 4 1/2...so my 'lower half' and I have been on quite a bumpy (painful & invasive) road for the last 9 years...

I was diagnosed with LS about a year ago (by my dermatologist after a year of misdiagnosis by my gynaecologist...as thrush). I think that this subject really needs to be made more available to South Africans as there is no literature on it here and our gynaecologists don't seem to know much about it or how to diagnose it.

Quite a lot of skin damage was done before the correct diagnosis so by the time I started using the dermovate I was already in quite a substantial amount of pain (redness, itching, painful sex, painful passing stools etc). There has been some discolouration of the skin and the texture seems to be different (sorry so graphic).

My Mom and sister are very supportive but clueless so it would be great to chat to those who are experiencing the same things as me. Please advise of products to ease pain...especially which soaps and lubricants to use.

My husband also knows but he is in denial...where I have been for the last year!

Thanks for reading...Leah (not my real name, sorry)

1 like, 46 replies

46 Replies

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  • LeahRSA
    LeahRSA

    Posted

    Another question: should I be seeking advice from a specialist other than my dermatologist? I don't think I would ever take pics of that area myself but maybe I should ask my dermatologist (like when she does mole mapping pics)?

    Started watching the webinar but only got 10 mins in before I was called away so definitely on the agenda tomorrow...having information overload as it is but maybe not a bad thing...

    Thanks, night, Leah x

    • hanny32508
      hanny32508 LeahRSA

      Posted

      I take pictures with my camera on self timer.  That way you build a record of the progress and I have even brought these pictures with me to a doctor's visit.  Digital is great, you can enlarge for better viewing.
    • suedm
      suedm LeahRSA

      Posted

      Hi if you feel overloaded why not sit down with a notepad and write down what has been said - in bullet points - perhaps with the name of the person who wrote it - that way you can refer back easily. You could put headings- diet, clothing, chemicals, routines, medicines etc You could then tabulate it and tick those you have tried and after a given period whether it has worked for you.

      Life is feast or famine isnt it??? Good luck

  • margaret289
    margaret289 LeahRSA

    Posted

    Hi Leah,

    sorry to hear you are having such difficulties.  The accepted wisdom on this site is to avoid all soaps.  Just washing with water, with perhaps a spoonfull of sodium bicarbonate in it is a good idea, especially after you've been to the loo.  I find coconut oil (the stuff which solidifies in the jar in cold weather - we have more of that here than you do in South Africa so it's probably a liquid where you are ;-) ).  Keep the lubrication very simple and totally avoid anything which has a strong perfume.

    • LeahRSA
      LeahRSA margaret289

      Posted

      Thanks Margaret,

      Yesterday I had a bicarb bath in the morning and a shower using a aqueous cream bar (6 × the price of normal bar of soap here) in the evening and I can honestly say that it has made a difference. Before I was using the Dove gentle soap.

      ...long journey but at least I have started...

    • LeahRSA
      LeahRSA

      Posted

      Hahaha...yes, coconut oil very running in Summer and solid in Winter... smile
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