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LS is so ever present

Posted , 9 users are following.

groky
groky

I wanted to stop thinking about having LS as my mind has been going over and over it. So, I stopped using my A&D ointment that helps keep the burning at bay. For a couple of days it was ok, then today the burning started.

Took out my mirror to see what was going on and I had such dryness

around my rectum and a small tear that hadn't been there before a few days ago. Guess there's no "pretend it isn't there" or any time off from this. It

Just takes a lot of care to keep it somewhat under control. Just needed to vent. And having to wait until Monday to see what has prolapsed is it my

bladder, rectum or uterus....then will I have a hysterectomy. All this

worrying isn't helping as it's making my stomach acidy a now I have

canker

sores on my tongue lol geez a Lou this is getting ridiculous.

3 likes, 25 replies

25 Replies

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  • hanny32508
    hanny32508 groky

    Posted

    Sad but so true, LS seems to be forever.  It takes forever care.  Found that out through trial and error as well.  You slack and LS hits your right back.  

    I can so understand that you need venting so now and then.  Grrrrrr.  However, aren't you glad that there is a site where people so understand what you're going through?  

    Wishing you WELL.

    • groky
      groky hanny32508

      Posted

      Thank you. And yes I am so glad for this site and the nice group of ladies in this group. ;0)
  • suedm
    suedm groky

    Posted

    Being an ostrich is so good, I too went down that path, but just moisturised when feeling dry, but as you say the body will do its stuff. The trick is to keep LS in a compartment all of its own. To be visited at times of bathing and trips to the loo. Sometimes The Itch, or the Hot Coals will open the locked compartment to be a nuisance  and make wriggling in public places necessary at times. Otherwise one can obscess, stress and make matters worse.

    The sad thing about getting older is bits of the body wears out or gets over worked and we notice those bits more, however as someone once said it Is better than the alternative...........! Good luck with the prolapse, with luck you won't need a hysterectomy but just a few stitches ( under anaesthetic) to to put you back together again

    take heart and try to be positive, it will help. You will have the support of the others on this site wanting the best for you

    sue 

    • groky
      groky suedm

      Posted

      Thank you Sue. I'm going to work on a more optimistic

      outlook when dealing with all of this.

  • patricia86334
    patricia86334 groky

    Posted

    You know what helped me?  I looked for and found a Vulvar clinic, and a specialist in LS there.  As I read all the suggestions and experiences on this forum, I began to realize my ob/gyn didn't know enough about LS, so I began to worry about every little twitch, thinking she wouldn't know how to fix it or help.  I was amazed at how many Vulvar clinics were within a few hrs of my town, too.  I thought I would never find one, let alone have a choice.  Anyway, once I saw the specialist, and she took me off clob. and put me on a milder steroid (I had been on clob about 2 yrs by then)....I relaxed a lot, and a lot of the fear went away.  Just putting my mind at ease is what helped me.
    • sheila49099
      sheila49099 patricia86334

      Posted

      Many Vulvar clinics? 

      a

      What country/town are you living in?   am looking for a vulvar

      clinic.  I am in London Canada

       

    • Morrell1951
      Morrell1951 patricia86334

      Posted

      I think many of us may be using the Dermovate incorrectly, as Dr. Goldstein warns. For the first year I applied it to the whole red area about two inches outside my anus and it just remained red and sore. Then on my second or third clinic visit my gynae said I still had active LS near the rectum. That was when I used the shaving mirror to look more carefully and sure enough, just the creased entrance is whitish. So I stopped applying Dermovate to the wider area and it stopped being red! I had been thinking coffee was loosening my bowels and making that area red with LS, but it was the Dermovate (and maybe also the coffee – I quit for a few months and now have only one cup a day at most).

      It's helpful to get your doctor to be super-specific about where to apply the ointment. And wait half hour or so to let it penetrate before applying whatever oily moisture barrier you use, so the drug doesn't end up mixed into a runny ooze.

    • Guppy007
      Guppy007 Morrell1951

      Posted

      Morrell, I think you may be correct in that many woman are probably unsure of where to apply the cream, its simply not something their doctors have taken the time to show them, and yet you do need to be extremely precise on where to place it, bearing in mind the potency of the cream!!  
    • sheila49099
      sheila49099 Morrell1951

      Posted

      I'm sorry Morrell, I must have missed something along the way.  Where

      is Womens College Hospital? 

    • groky
      groky patricia86334

      Posted

      I'll have to look into seeing if there are any vulvar specialists in my area or within a few hours away. My gyno is wonderful but I don't think he knows LS in-depth.
    • sheila49099
      sheila49099 Morrell1951

      Posted

      thank you Morrell.  I am currently in the U.S. south but I will be going home soon  and will be in Ottawa first to see my kids etc. and my Dr who is there.  I will see if she can book an appointment for me.
    • mborr
      mborr patricia86334

      Posted

      Hi Patricia, which milder steroid has your specialist prescribed?
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