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How do you describe LS to others?

Posted , 14 users are following.

ElleF
ElleF

I think one of the challenges when LS shows up in the genitals is how we decide whether we are going to talk about this with others and if we are what do we say and to whom? I am someone who has always been quite open about her sexuality and many aspects of my life and so those close to me know about this in some capacity however I don't talk to everyone about it. 

I have told people in my life about this diagnosis for a number of reasons. One, initially I was very upset and needed to talk to someone because talking is how I process. Two, I wanted the women in my family to know about it as I think my mother had it and  if there is a genetic connection, I don't want them to go through the misdiagnoses that I went through. Had I know this thing existed when I was in my twenties and my skin was splitting, well things would probably be very different now. 

Thirdly, on a broader level, I believe that LS isn't well known not only because it is isn't common, but because of the discomfort we have regarding talking about our genitals. We do ourselves no service in grinning and bearing it silently as women are wont to do on so many fronts in their lives. While it's not common place I suspect it is less rare than we think as there are many doctors who don't recognize it. Without raising awareness of it, it will not become a priority for funding or be on more doctor's radar.

My question to you, especially those of you who have have lived with your diagnosis for quite some time and who are open about it, how do you describe it to others? Do you have a favourite website that you use for those who want more information? 

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  • sheila49099
    sheila49099 ElleF

    Posted

    ElleF - you have raised the ultimate conundrum. Damned if you do and damed if you don't.  Only my daughter knows of the diagnosis I had years ago but never talks about it and  so I don't either.  I did broach the subject about a month ago to a close  neighbour and friend who was a nurse for 40 years and she said she never heard of it.  She also did not ask any questions abou  it. I said I used a spray of water and baking soda after bathroom use and she immediately jumped in that that was not good because in the hospital they always used some other form of  (I will call it a chemical formation even though I know that is not right) for douches. I just said it is not a douche and dropped the subject. 

    However I did mention it to my GP and she said good - it neutralizes. I am so not comfortable telling other people, and may not do so again. I did have a 15 year relationship with a man and had the ultimate sex and he never knew.  I do think that a healthy and continuous sex life keeps things in good working order.  I currently have no sex and 

  • sheila49099
    sheila49099 ElleF

    Posted

    let me finish....and probably won't again.  Woe is me! Yes I am glad we have each other but that is still not the answer.
    • Chrisy
      Chrisy sheila49099

      Posted

      Maybe you are right about the healthy sex life being good for us as my husband and I had a really great sex life for several years.  Looking back I know I had this condition at the time but found that it was worse during times when my husband was working away from home.  Good point...

      I have had conversations about my condition with 5 friends, my daughter as I think my paternal Grandmother had this.  Two of my friends had the condition, one knew and one did not. I also spoke to about 20 women in a class I was attending about the condition.  No one had heard of it and most were shocked but were pleased I had found the courage to tell them about the condition. I know at lease one of them thought that it might be the answer to a condition she had suffered for a while and was going to investigate.  I was able to talk to her privately and offer advice.  

      I have written to Women's hour, Loose women and another well known woman and have not received a reply from any of them apart from a generic reply.  Women's hour on the radio I later discovered did a programme on it some years ago.  I found that out by searching on the internet. 

      Some men can be cured by having a circumcision.  Not all as it depends where they have it.  I do wonder if this condition spreads, and if so how?  It is only thought to be auto-immune there needs to be much more investigation on this subject.  If only to help those that follow us.  It would be lovely to find a cure or at least a treatment that prevents worsening of the condition.

      Children can have it and if treated can be cured,  I wonder if the condition returns when they are older.  I don't think this point has ever been mentioned on here before and if anyone who had it as a child has been cured!! only to have it return later in life.  I definately had times in my life when it was in remission.  I think looking back I had it quite young and then it calmed down for most of my 30's and 40's,

      I am at present worrying about my urethra closing as it is taking longer to empty my bladder.  I will be visiting the doctor again soon to investigate this.  Such a terrible condition we have to tolerate. 

  • ElleF
    ElleF

    Posted

    Like Morell I'm rather graphic about my description. I don't go on at length but get right to the point - it's not life threatening but it's serious If I don't take care of myself. This is what could happen if I don't stay on top of it. Stress makes it worse and it will never be cured but can come and go in flare ups. I assume people don't really want to know much so I give them the go ahead to ask me more if they want to but I expect to never talk about it again. I usually don't give them the name so they can't look it up on the internet, but if they do press and learn the name I tell them not to look it up because the internet is full of worst case scenarios and I didn't sleep for a month after obsessively googling it. 
  • suedm
    suedm ElleF

    Posted

    Hi  I will tell people that I have An Itch on the Undercarriage- and auto immune condition brought about by stress and hormone changes, it could be familial andI have told my sons who are very supportive.

    Recently  I mentioned it to my newly met niece and said if she has recurrent thrush like symptoms to go to GP and tell them I have LS - and to check out with a mirror regularly  to see if there are anatomical changes to the structure

    I downloaded the slides from Dr G's webinar and printed them and have showed them to a female friend - seeing them made he r very supportive and understanding!

    Most of my female friends are awware i have the condition but we dont discuss it - but i did ask them to inform their daughters of the condition - similar to breast awareness

    We really should stop thinking that ANY part of our body is yukky! it is a wonderful amazing "machine" that is abused  ignored and neglected and STILL it functions until death , and long may it do so!

    Dr Goldsteins webinar is  really non sensational informative and helpful on many levels - I gave the prints to my local surgery to pass around the practice so they too can look at and listen to the webinar

     

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