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Spread the word

Posted , 10 users are following.

Bridge_of_Sighs
Bridge_of_Sighs

Hello all

I've been following your discussions for ages now, and want to say what a difference it's made to know that I'm not alone even though I've not been posting.

Today a friend came round for lunch and said I looked a bit down. I blurted it all out, told her everything about LS, all the intimate icky bits that I wouldn't normally have shared (I'm a very private person). It felt like such a relief to let go of holding it all in. As far as I know she doesn't have LS herself, but when she left she said she's going to keep a regular check of herself, and tell all her friends to do the same, and pass it on. I don't know any of her friends, but the word will spread.

I don't want to tell too many people, it feels too personal, but I do want to get the word out so others don't have to suffer. I know that this friend isn't a gossiper so there won't be any connection with me later. I wanted to share how empowering it felt to talk about it to (a carefully chosen) someone who wasn't a sufferer, and how that could have a positive outcome for others.

3 likes, 30 replies

30 Replies

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  • Morrell1951
    Morrell1951 Bridge_of_Sighs

    Posted

    I Bridge,

    Great nickname! I think your approach is great. I did the same thing. We all have the power to raise awareness. I'm not expecting that any research will arise from our efforts – even among non-fatal chronic inflammatory disorders LS is low on the list of priorities. What will make a difference to many people is early diagnosis.

    With the internet to spread the word among sufferers we can use our individual power to leave little cards in bathrooms and talk to select friends.

    I'm glad you're here.

     

  • AZM
    AZM Bridge_of_Sighs

    Posted

    I too, like you, was too embarassed to speak to anyone about it, but when my gynae axplained to me that I have " a sick skin" I somehow didn't feel like an outcast with this terrible disease. I don't go into all the " sore bits and painful details" but am now more open with my friends when asked what's wrong , I just reply I have a sick skin and can't do all the things i used to - like aqua aerobics and wear skinny pants etc . and leave it at that. I feel much more positive and confident that somehow it will be ok and I don't have to hide in the corner!  Sharing is caring!!!!
  • Chrisy
    Chrisy Bridge_of_Sighs

    Posted

    I have talked about this with my close friends and some family members.  To date I have found one friend who definately has it diagnosed, and one friend only this week who from my talking about it some weeks ago has realised that she most likely has it. She is going to her GP to find out.  If it helps others a little embarassment will be worth it. I like the leaving a card in loos idea - not sure if it would be classed as litter.  I find I feel better after a natter with others.
  • Bridge_of_Sighs
    Bridge_of_Sighs

    Posted

    I've just done something else as well; maybe any other UK people could back me up on this. I've e-mailed Radio 4 Women's hour, told them about LS and how nobody knows about it including GPs and isn't it time they did a programme about it to raise awareness? Let's go for maximum impact!

    I think I'd still choose to remain anonymous if they did do a programme, but if a few more people could e-mail in and say that awareness is needed and that women are so much worse off because of failures of diagnosis, sometimes for many years, then they'd have to take notice.

    What about getting it out on the radio in other countries?

    I've only had a generic response so far, but it was only yesterday.....

     

    • Chrisy
      Chrisy Bridge_of_Sighs

      Posted

      Good idea,  I tried Loose women on tv but apart from a generic response got nowhere. Will join in.

       

    • Chrisy
      Chrisy

      Posted

      Just thought I would add to this post. I went onto Women's Hour site on BBC and thought before posting a email to them I would see if they have ever discussed this problem before.  I discovered that they did on 22.3.2006 which was followed by another discussion on BBC News Chanel by Fabia Brackenbury on 26.3.2006.  A written record of this is on their site.  I have however sent a comprehensive email to Women's hour asking for them to repeat this topic and have supplied a lot of information that has not been mentioned before.  I have not declined my information as I feel I could talk about it on a radio.  I would not however be happy to talk on TV.  I have had the usual generic reply and will update you if I get any reply.
    • Guppy007
      Guppy007 Bridge_of_Sighs

      Posted

      Good for you!...a few of us are currently thinking of ways to raise awareness also (Debs post).  Womans magazines might be interested in doing something, that might be worth looking into?  I think  your radio idea is a good one too...go for it, and best of luck!
    • suedm
      suedm Bridge_of_Sighs

      Posted

      Women's hour did a topic on LS a few years ago - but sadly i missed it - Good for you to remind them again

      If i have time i will email them too may be more the merrier and we can get the awareness Out There

  • Bitchin_itchin
    Bitchin_itchin Bridge_of_Sighs

    Posted

    Hi there.  I have just returned from a GP exam and all the LS signs are there. I looked it up as soon as I got home and don't feel quite such a leper now!  I agree that it is so embarrassing to discuss... No one wants to know about itchy anuses and the like, it's all too graphic.  That said, if there was not a forum like this then we would all be feeling very isolated and depressed for sure. This is the beginning of a journey for me and I would be truly grateful for any support. X
    • Chrisy
      Chrisy Bitchin_itchin

      Posted

      Sorry you have joined our group but you have come to the right place.   Lots of good advice on here.  If you haven't you should check out the very first pinned post on the lichen sclerosis forum- Start here.  It has details of a webinair radio chat by a specialist that is so worth listening to.  It lasts for an hour but it will be an hour well spent as it gives so much good advice on the treatment and the reasons why you should treat things and what with.  This would be good to listen to before you chat with everyone on this site as it will give you knowledge and as they say knowledge is power.  Good luck. xxx
    • Bitchin_itchin
      Bitchin_itchin Chrisy

      Posted

      Thank you Chrisy. The info and support available here is amazing! We women sure pull together in adversity! Xx
    • Morrell1951
      Morrell1951 Bitchin_itchin

      Posted

      Welcome, Bi. Great nickname. The women on this forum have saved me from my negative mind. There's always someone here.
  • Chrisy
    Chrisy Bridge_of_Sighs

    Posted

    Just an update, no joy with Women's hour to date.  I sometimes think we are on our own with this.  I hope to have my foot cast off on the 9/1/15 and if so I have an appt on 12/1/15 with my dermatologist.  I am going to try to have a chat with her about all this.  Hope everyone has had a great Christmas.
    • Morrell1951
      Morrell1951 Chrisy

      Posted

      Yesterday when I was Googling LS I found a 2011 site (still under construction) "Vulvovaginal Disorders: An algorithm for basic adult diagnosis and treatment by Dr. Elisabeth Stewart".

      She's a foremost authority and has had an excellent article online for some time (Google Elisabeth Stewart lichen sclerosus and you'll get

      I read an article in Harpers recently about algorithms as the standard diagnostic method, so doctors need instruction in the specific algorithms for each condition. From Wikipedia: "Medical algorithms include decision tree approaches to healthcare treatment (e.g., if symptoms A, B, and C are evident, then use treatment X) and also less clear-cut tools aimed at reducing or defining uncertainty."

      I've emailed the web designer to ask what happened with this site.

    • suedm
      suedm Chrisy

      Posted

      Hi Chris, I have just read your update so thought i would write to Women's Hour too Here is what ia wrote:

      I have been diagnosed with Lichen Sclersosus and was told it is a rare condition, This is not so, just under diagnosed. Often it is mistaken for Thrush and anti thrush treatment given. unfortunately it is an embarrassing condition for  women to discuss even with the nearest and dearest. The younger women are frightened that it is a STD- it isnt; but it DOES affect their sex lives as the tearing for the skin makes normal sexual contact extremely painful and difficulties can arise with their partners, however if untreated it can lead to cancer of the vulva, which could entail a radical excision of the area

      It would be wonderful if more  women, general practitioners and pharmacists were aware of the condition. Too often  no one LOOKS at the vulva and nurses undertaking smears are not familiar with the condition either so again it  goes unrecognised.

      I have been in contact with a woman who had to have emergency treatment as the whole vulva had been absorbed and the entrance to her urethra sealed, she had been spending hours every day trying to squeeze out the urine through the pin hoe - which finally closed just before Christmas" (I hope you don't mind Hanny that I used your story- but NOT your name or location)

      "PLEASE will you raise the subject with the programme producers or makers and make the subject less taboo Gynaecologists are primarily surgeon and Dermatologists dont "take the Knickers off" according to Dr Goldstein in (Washington USA) there are VERY few vulva specialists in the world apparently

      Please Help

      Thank you"

      What do  you think?

      PS Happy Healthy and Flareup Free New Year to you all

    • Morrell1951
      Morrell1951 suedm

      Posted

      Very newsworthy letter, Sue! Let's hope for the best.

      Happy New Year!

    • Chrisy
      Chrisy suedm

      Posted

      Sorry for the late response Suedm.  Had a few days when I didn't feel well and couldn't be bothered with anything at all.  Dreaded Lurgy that everyone around me seems to have had.  That sounds brilliant.  Let us know if you get any more than the generic reply.  Well done.
    • Chrisy
      Chrisy

      Posted

      Happy New Year everyone.
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