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Had LS since I was 16

Posted , 5 users are following.

noname9043177
noname9043177

Hey

In 2006 when I was 16 I started having 'problems' down there and found intercouse painful. I brushed it off and it was until 6 years later in 2012 I got the diagnosis. I've never had a normal sex life, my clit is almost gone, covered in skin,(still feeling it though) my vagina is nearly closed and everything hurts badly down there if there is any activity. I get tears so easily...

I got steroid creams which didn't help and my gyconoligst sent me to another specialist since she couldn't help anymore but it was very far from me and to be honest I was hoping it would just dissapear on its own so I never went.. now it's november 2015 and I went to my gyconoligst again. She said it was getting worse and again she sent me to another specialist .. this time I'm going!!

I was in a relationship for 6 years with a man who had a low sex drive so it was perfect .. i can still have sex but not without pain. However I'm now single and honestly I'm dreading - who wants a girlfriend who can't have intercouse without pain.. i feel like I have lost a part of my feminine side.

I don't know what the doctor will say - the gyconoligst talked about an operation to 'get the clit out again' .. honestly im scared. Will it even change anything except the looks?? Has anyone had an operation down there..

Thanks for reading my story.

1 like, 8 replies

8 Replies

  • noname9043177
    noname9043177

    Posted

    BTW until I can visit the new specialist . What can I do so it won't get worse?
  • Chrisy
    Chrisy noname9043177

    Posted

    Hi no name,  You can calm things down  a lot by using baking soda in your bath 1/3 cup.  Or a pinch in water in a spray bottle to wash after urinating.  I think you should wait until you see your specialist in case she wants to biopsy.  Treating with clobetasol would work but this may give a negative reading when biopsied.  Some use coconut oil, hydramol or Epaderm abnd many other forms of moisturiser.  Good luck
    • Chrisy
      Chrisy noname9043177

      Posted

      It neutralises any urine, calms down any redness, basically leaves the area clean and soothed.
  • hanny32508
    hanny32508 noname9043177

    Posted

    Hi Noname,

    Sorry to hear/read your story in which you share your experiences with LS.  Not a fun trip you've made.  

    Some thoughts:  Baking soda baths (1/3 cup) and baking soda rinses (three pinches in a Perin bottle) might help turning things around.  It did with me - the fusing gradually melted. (and I couldn't believe my luck when I noticed this happening) Cover with coconut oil to moisturize.  (coconut oil helps also in other ways)   Next:  Have you thought about dilation?  It keeps the area from narrowing further.  (I'm still doing that every day and is of big help for my gentle sex life) (lubricant I use is fluid coconut oil)

    The important thing for my was that I got myself back again. (Physically and pschologically)  

    Sincere warning - be very hesitant about having surgery of any kind.  Only a dilation procedure will be beneficial, if truly necessary.  No surgical knife should touch the area.  

    Hopes the above is of some help.  Wishing you well.  

    • sandra01720
      sandra01720 hanny32508

      Posted

      My husband said sadly recently," I just want u back again." I notice you said you got yourself back again. Was it a matter of time in learning how to deal with LS? Or what helped you get through the physycological part of it? I'm very stressed again about it. I do have times though, where it doesn't define my life anymore. I'm just presently fighting a fresh flareup. I only had about a three week break between my last one and this one.
    • hanny32508
      hanny32508 sandra01720

      Posted

      I think that a person goes through some kind of grieving process with this disease.  A natural process.  I may have expressed it in a painting.  Some form of therapy - I've made a special pouch to carry the LS items in - Perin bottle, small containers with coconut oil and baking soda. For when 'en route'.  I've made special pillows, all just to find some form of comfort living with this dibilitating illness.  

      And there was this forum, where good info on what to do, what would help, what would bring some comfort etc. was shared.  And people wishing each other well.  Gradually a person then is nourished back to life, a different life but now doable.  

      Sandra, I encourage you to hang in, pay attention to the things that make it worse and have the courage to live a strict life with diet, among other.  In the end it does pay off.  But you have to be diligent.

      My husband has me back too.  Gentle intercourse is possible again.  Also that takes some ingenuity.  With regular dilation (daily)  I keep all free from the narrowing by LS.  For lubrication I use fluid coconut oil.  

      Things I've learned - do not waver from your diet, baking soda baths and rinses, dilation.  Minimal glob remains needed.

      Hope you will do well.  

      Live well. 

       

    • sandra01720
      sandra01720 hanny32508

      Posted

      Thanks. You give me hope. Grieving process is right. I realize finally I need to stop fighting what I cannot change. I can change my attitude and be thankful for the many good things I have. I have a wonderful husband but I see him grieving with me. It hurts him to see me devastated and afraid and uncomfortable. Sometimes I'm afraid I won't be satisfying to him anymore. I feel like I must be a disappointment, but he wouldn't want me to feel that way!

      Thanks for your kind words. This forum has helped me so very much. Sometimes when I'm down, the kind words on here and hearing positive testimonies like yours get me going again.

      Its a very lonely disease.

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