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Fusing and atrophy

Posted , 11 users are following.

christine64600
christine64600

Does anyone know how to halt fusing other than Demovate ointment and coconut oil?? Thanks.

0 likes, 28 replies

28 Replies

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  • Pollyanne
    Pollyanne christine64600

    Posted

    This latest thread illustrates just how desperate we all are clutching at any new suggestions in the hope of a cure, which we know will never come, but oh how glad we are for all the suggestions, thanks ladies.

    There seem to be so many different symptoms as well. Everyone's experience is different which doesn't help.

    Myself I think I've had it a while before diagnosis but as I also have herpes have come to think that a lot of the sores were that, my main worry now is fusing and losing labia, but although these have gone nothing else seems fused, in fact I seem really open which makes me worry about infection getting in. So in fact is the loss more to do with age? I'm 74.

    How can you not feel a thing but actually lose more within days? I suppose I should check even when not feeling sore.

    Is the consensus about fusing bathing with bicarbonate and using clob and oils while physically separating? Do you put clob on broken skin?

    There are so many questions.

    I am seeing GP this week for some reassurance but actually get more on this forum. Thanks again for listening.

    • christine64600
      christine64600 Pollyanne

      Posted

      You have expressed how I feel.....still  learning about this condition as I thought I was fine because of the lack of 'flare ups' ....turns out not to be. Who knew?? For the record I have seen two female doctors and one female consultant and I have found the later less then helpful. Her parting words to me after I kept repeating.'but I have no symptoms?" were..."I can always cut the opening if it closes'...which left me more confused as at that time I couldn't imagine how that could happen. Sadly four years later I now fully understand how it could happen. Thanks for replying.

       

    • helen99763
      helen99763 Pollyanne

      Posted

      I have the same question:" Do you use clob on broken skin?"  

      Another question, has anyone in this forum actually had surgery to re open fused tissue?  I think I read some time ago that someone had.

      If so, tell us please all about that surgery - ie, was it done in hospital? with what anesthetic? healing time and experience since?

      I think this would be so helpful for all of us to hear. 

    • Morrell1951
      Morrell1951 helen99763

      Posted

      Use clob on broken skin.

      Before thinking of surgery, understand the Koebner effect. Any cutting, scratching, pricking – trauma – of the skin can trigger a flareup.

    • hanny32508
      hanny32508 helen99763

      Posted

      Hi Helen,

      I have had a dilating procedure done, with total anesthetic.  It's the best solution when almost totally fused.  I came out really well.  

      Combined with the bicarbonate baths and rinses, which gradually 'melted' the rest of the fusing away, I'm 'as good as new".  

    • hanny32508
      hanny32508

      Posted

      Forgot to ad:  Cutting is not a good solution.  Beware!
    • hanny32508
      hanny32508

      Posted

      Dilating is important to keep things open.
    • kathryn07219
      kathryn07219 helen99763

      Posted

      I was offered surgery by a gynaecological registrar but, having researched it, the results were very hit and miss and I decided not to go ahead.  When I saw the senior consultant at the next visit, he wasn't keen on surgery! Seems to be an individual choice.
    • helen99763
      helen99763 hanny32508

      Posted

      Hanny, thanks for sharing your experience.  Dilating is something I have not tried.  What does one use to do this? Is it uncomfortable or painful to do? How often should it be done?  Wish there was a "dilation manual"!

       

    • helen99763
      helen99763 kathryn07219

      Posted

      "Hit and miss" results would surely not be encouraging.  I am sure you made  a wise decision.  Surgery would be a last resort, I think.  How I wish the medical profession had more interest in fore research on LS.  Thank goodness Dr. Goldstein tries to help us.
    • hanny32508
      hanny32508 helen99763

      Posted

      You can purchase a dilation set at Amazon for example.  The cones are of various sizes and come with a handle that you can attach to the various sizes; you start with the size that fits comfortably.  Gentle does it of course.  I use fluid coconut oil for lubricating the cone. (ordinary lubrication for this purpose has a certain stickyness, and that's not at all helpful of course)  Eventually you will feel that a bigger size can be used.  In the beginning I sometimes had to go back one size.  Till all was good again for a bigger size.  Patience is virtue.  

      I do my dilating every other day at the moment.  Wish it could be less.  But I had a lot to recover from.  

       

  • suedm
    suedm christine64600

    Posted

    Hi Christine - you certainly have sparked off a lively  thread...however I normally say do check out the Dr goldstein's webinar it does contain a lot of information and help one to understand the anatomy and physiology and what is happening  to  the area,(it takes an hourbut wotrh while) in case you havent come across the page New to LS it  is also a great source of information on the what has worked and what to avoid- like nice smellies in the bath a strict No No

    Remember we are all very different and are affected in different waysand  as we are all unique it is a matter of trial and error- Take care and good luck

    Sue

  • athena93317
    athena93317 christine64600

    Posted

    Use aloe Vera gel every time you use the restroom and vitamine e oil 45,000 iu at nighte make sure to wipe clean before applying anything
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