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Posted , 6 users are following.

Lama22
Lama22

Hello

I have been reading posts with interest. My story is I am 62 yrs and was diagnosed with LS 18 months ago. I had never heard of this and was really unhappy about it. Now I read of younger ladies getting it I feel fortunate that it left me alone until. Later years. My GP was great, went to see her because I was in a new relationship (I had been on my own for 6 years after my husband died) and sex was painful. She took a look and didn't hesitate in diagnosis of LS. Gave me hand out sheet, dermovate on repeat and said to go back for checking every now and again. Had to tell partner and felt awful though he wasn't put off fortunately. Told him it wasn't contagious or an STD.

This website is the first time I have come across other ladies with LS, and only by chance as was part of the hip replacement forum!!

Thank you all so much for making me feel less isolated and more knowledgeable.

Barbara x

3 likes, 8 replies

8 Replies

  • Hazel1962
    Hazel1962 Lama22

    Posted

    Hi Barbara,

    Sorry to hear you've joined the club (in the nicest possible way of course). If you can call it lucky then you are that it has left you alone until now and also that your new partner is being supportive as this is priceless, long may it continue.

    You should listen to Dr Goldsteins video as well as reading the forums, there is lots of useful advice on here and if you need or want to know something just ask, there is always someone to help. You definitely aren't alone, in fact it's a lot more common than you might think. Everyone is on their own journey with this awful condition and it is very much a journey of discovery to find what works for you. 

    Best wishes.

    • Lama22
      Lama22 Hazel1962

      Posted

      Thank you Hazel. I have started to watch the video and will pick up again.
  • lizziewizzie
    lizziewizzie Lama22

    Posted

    hi barbara

    really appreciated your post...its good to get together for support.

    very pleased to meet you!

    liz

    so glad for you that partner is supportive that really is special...and I am so sorry for the death of your former husband.

  • Barking
    Barking Lama22

    Posted

    Hi there Barbara - welcome to a very supportive club. I am the same age as you and I have been fortunate in having a dermatologist overseeing my case for the past 2 years or so. He said it was one of the worst he had seen (very reassuring!) but he has     given me support and help when I have felt desperate. I am having a major flare up at the moment and have to return in 2 months time - I went this week and had previously gone in February. There are many unanswered questions and I don't really know where it is all leading. I am on the twice daily clob for 2 months and I have to apply it to the anal region as well now as the scarring, fusion and white areas have spread.

    Like you, I am so grateful not to be in my teens or much younger as I could not imagine periods or trying for babies whilst in this state.

    Also like you, the support, knowledge and camaraderie on this website have really lifted me and made me feel less alone with this affliction.

    So, thank you everybody - I am in the UK but I know we have supportive members worldwide. Best wishes to you all,

    Barking

    • Lama22
      Lama22 Barking

      Posted

      Thank you. I will follow posts and get as much information as I can. Knowing more about it and that there are others with it gives me confidence to see GP and not just put up with it.

      Sorry you are having such a bad flare up at the moment and wish you a better time ahead

      X

  • hanny32508
    hanny32508 Lama22

    Posted

    You may count your lucky stars that your new partner is understanding.  Not a nice 'discovery' that you have LS though.  Hope you will find lots of helpful suggestions on this forum.  A comfortable place to share and care and feel less isolated with this very intimid health issue.  Wishing you WELL.
  • pat48434
    pat48434 Lama22

    Posted

    Oh Barbara, so sorry although sounds like you have a wonderful friend.  I've had LS for two years  Also choking, thyroid, and UTI's.  Couldn't stop the UTI's until I was put on a list that the US government warns against using after age 60, I am 78.  Finally, (almost afraid to say,) they have not come back yet but the med was really hard on my blood pressure.  I use unscented baby wipes after each bathroom visit.  My GYN has me on Clobesterol 2 times a week which seems to hnelp. My problem is I live in Florida and sweating in the summer means lots of cool showers, wouldent dare get into the pool with chemicals.  Good luck, Pat sister in LS.
    • Lama22
      Lama22 pat48434

      Posted

      Thank you Pat. I'm overwhelmed by people that have taken the time to respond. So encouraging xx
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