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private treatment?

Posted , 9 users are following.

alison54950
alison54950

At the end of my tether with raw burning feeling, and now have some white patches which were never there before. I have tried dermovate with no great benefit. I had some relief wiith coconut oil and aloe vera gel but never seems long lasting. i have had so many days where it is uncomfortable to sit. I have just returned from being abroad and this was the most miserable holiday ever as going into pool and sea was hell. I had an appointment for a vulva specialist on the 7th Sept, but came home to a letter to say it has been cancelled. Future date to be sent out. I am so worried this is progressing so quickly! I am now considering private treatment. Has anyone else went down this route or got any other advice to share? Thanks x

0 likes, 19 replies

19 Replies

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  • kathleen65757
    kathleen65757 alison54950

    Posted

    Maybe change the cream/ointment. I use Advantan fatty ointment and I find that very good. A GP can prescribe that for you. If one does not work then a change seems indicated. 

    The only other thing I do is use Dermeze sensitive,which is a moisturiser.

    • patricia86334
      patricia86334 kathleen65757

      Posted

      hello..I'm so sorry you are having a hard time right now.  You might go on line and look up emuaid ointment.  Not emu oil (which is wonderful and I use it many times every day for comfort and to prevent that sticky feeling)...but emuaid.  I buy mine on eBay, but it is only a couple of dollars less than from the company that makes it...but sometimes I get free shipping, too.  It is around $50.00 a jar, but I will never be without it!
    • alison54950
      alison54950 patricia86334

      Posted

      Thanks for reply, I have tried emuaid but never found great benefit, not tried emu oil! What's the best one to try? Does this prevent patches or does it just moisturise?
    • patricia86334
      patricia86334 alison54950

      Posted

      as far as I know the emu oil just moisturizes...I think that steroid ointment is the only treatment so far, although some here are trying other things.  I only know I will be on the steroid forever I guess.  My dr who specializes in LS at a vulvar clinic, took me off clobetasol and put me on a milder steroid called tryamcinolone.  I use it twice a week.  I have had no problems at all until recently, tho.  We had a house fire 5 mos ago and have not been back into our house since the night of the fire, so I have to say my diet has been shot.  I was doing sooooo good with NO sugar or coffee, but since leaving my home and all my stuff, I have eaten carbs, sugar, coffee...whatever is around, partly for stress I guess.  So I am finally paying the price for that.  In an earlier post I said how Perrin Creme Complete was not as good for me as emuaid, but when my bottom started really bothering me a couple of weeks ago, I tried the Perrin's, and was really impressed at how much it helped.  So, even tho I had dissed it earlier, I went on line and bought another jar (another $50) and have used it a lot for the past week or so.  (A side note:  it has REALLY shrunk a small pre-cancerous spot on the end of my nose!...of course, it had to be on the end of my nose)  I am very pleased with that.  I also do the baking soda/water spray, but no longer every day,  maybe every other day or so.  I hope you find some fast help from some one here on this forum.
    • kathleen65757
      kathleen65757 alison54950

      Posted

      I am in Australia. It is prescription only so you need to see a doctor. Any GP can prescribe it.
    • sandra01720
      sandra01720 patricia86334

      Posted

      And I second that on emuaid. It is a wonderful product! I'm having a minor flareup again and it's such a relief to put emuaid on. It's worth every penny! One container last a long time.
    • patricia86334
      patricia86334 sandra01720

      Posted

      It has been wonderful for me, too.  It is the Big Guns of soothing a flare-up.  I save it (and lately, Perrin's Creme Complete) for times of pain and when I can tell something is starting to develop....a tear or whatever.  Once the symptom of a tear or itch or pain is over, I go back to constant use of plain emu oil.  lol
    • patricia86334
      patricia86334 sandra01720

      Posted

      Hi Sandra,  I sort of feel a bit wishy washy now, because a while back I actually wrote that I didn't think Perrins creme complete was anywhere near as good as emuaid.  But a littlel more than a week ago I started to get a tear on the rim around the vaginal opening, and since that area has already closed up a bit, I thought I would use some of the Perrins that I still had in the cupboard.  I was very impressed with it.  It worked so fast for me, and took away some of the stress I was feeling about the cut.  In just about two days of using the creme a few times a day, it seemd as if the "sore" bit came away and now the skin is back to soft and smooth.  I think I said a few comments ago, too, that I have had a pre-cancerous little bubbly-sort of "dot" on the end of my nose!  I have had it a long time, and just thought "what the heck" and put Perrins on that.  It has almost disappeared...I can still feel a tiny, tiny dot if I rub the end of my nose, but from the surface it is almost gone.  That gave me even more confidence in the Perrins.  I am back to using the Perrins on my bottom area, all over, but not exclusively.  I use emuaid like every other time, after going to the bathroom.  When I know everything is back to "all clear" on my bottom, I willl only use emu oil again.  whew.  I hope this whole post is clear enough.  Sometimes in my head I make perfefct sense, but when I post it and THEN proof read, I don't even understand myself!
    • patricia86334
      patricia86334 glyn186

      Posted

      sigh...my informative post was just put into "moderation" and I don't say a single thing that isn't said here every day.  try eBay or a health food store
    • sandra01720
      sandra01720 patricia86334

      Posted

      Hmm.. That's interesting! Thanks for the opinion. I hope all's well with your nose.
  • hanny32508
    hanny32508 alison54950

    Posted

    Dear Allison, there is no long lasting cure of any kind for LS.  One just has to keep applying coconut oil, do bi-carbonate rinses and baths, keep dilating, watching diet (no sugar, alcohol, gluten, limited dairy for me) Perhaps also needed is to start using hormone replacement.  And more of the like.  It's a task and a half.  But at least life will become eventually reasonable trying to live with LS.  There is no quick fix, I'm sorry to say. What does make a difference is the determination to stick with a certain routine.  And that means - all the time.

    Hope you will find your routine in maintenance.  NO it isn't fun.  There are days I would like to skip and no longer do all the things I'm doing to keep it manageable.  Expresses like - BLLLLLLuuuuHHHHHH  but that's not an English word is it.  (ha) 

  • glyn186
    glyn186 alison54950

    Posted

    At the end of the day none of the creams are healers only moisturisers we need something that heals us everything else they give us is just experimental and all of the creams recommended on here are all what we have tried out ourselves helping each other I would recommend tea tree anticeptic crea. I have been using that and it heals any cuts and soreness I may try another anticeptic too I'll post on here if I have any success with anything else. GOOD LUCK Alison
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