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Hello ladies, just introducing myself here as a newbie.

Posted , 11 users are following.

maggie81413
maggie81413

I was only diagnosed with LS a week ago, and like many others on here, really struggling to get my head round it, it's been devastating. I'm 57, had a total abdominal hysterectomy 13 months ago due to pre-cancer of endometrium. I think that caused a shock to the system, along with the instant drop in hormones due to removal of my ovaries also. I can't tolerate systemic hormones due to them affecting my asthma, but now using Vagifem internally and cream externally on my perineum which has the LS. I am also using Dermol 500 cream to wash with and Clobetasol ointment, as prescribed by my Dermatology Consultant. I am also going to try a Borax solution as have read about good results with it. Finally, my perineum is the one area that's affected for now, but although I use dilators etc, sex always makes me split, so am hoping to have surgery in the future. My consultant mentioned the Z-Plasty with X Y Advancement may be an option later on. Sending hugs to all my fellow members on here. So nice to have some support x

1 like, 20 replies

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  • angela0180
    angela0180 maggie81413

    Posted

    Hi Maggie, like you, I have been recently diagnosed with L.S and am feeling the devastation of having this awful disease/condition. I have to say that I don't share the symptoms as most (I thought i had a yeast infection), just finding out that my clitoris has all but disappeared almost put me over the edge. This forum has been wonderful for me, but I also start counseling, tomorrow. Despite the support that I have from family, friends and this group, I'm still lost and trying to wrap my head around what I call my new normal.

    God Bless,

    Angela

    • sarb73328
      sarb73328 angela0180

      Posted

      Hi Maggie/Angela

      Like you, Angela I don't have some of the symptoms, but have fusing which seems to be happening fast. My doctor and GP have diagnosed me without biopsy. Can you tell me where have you found counseling? Are you in the UK? My GP offered no help for the psychological upset of this awful disease and I think I could benefit from counseling.

      Angela, I am 64 and equally devastated, we all need this forum.

    • maggie81413
      maggie81413 angela0180

      Posted

      Thanks for your reply Angela, I understand your feelings totally, bless you. I keep calling the menopause the gift that keeps giving. It's been a terrible 2 years for me. This diagnosis has been the icing on the cake :-( Like you, I'm trying to find the new me. I noticed my perineum was white a few months ago, but 2 GP's assured me it wasn't LS, I'd researched online. But after a 4 month wait I saw my consultant last week. I'm following all her advice, but going to try the borax treatment, which many women mention online. I'm so glad I don't get itching, but got white skin and fusion around the perineum, which has narrowed my vaginal opening that end. Hence my mention of the hope of surgery in the future. Apart from all the topical medication etc I am listening to various healing type music/visualisation online, because I've been suffering with post-menopausal depression, even prior to this horrible diagnosis. Wishing you the best of luck with everything. God bless too x

    • maggie81413
      maggie81413 sarb73328

      Posted

      Thanks Sarb, just a bit of advice that may help you. I think you can self-refer to get some psychological support. Your GP should have the phone number/website etc. I live in Cornwall and it's called Outlook in my area. Also, at my Dermatology Unit they hold a quarterly support group. I will go to the next one, but it's not till March. Hope this helps. Best Wishes x

    • angela0180
      angela0180 sarb73328

      Posted

      Hi Sarb. I live in the U.S. and I was referred to seek counseling, by my employer. My manager actually gave me the number, to our Employee Assistance Program and they will pay for the first 8 visits. My manager has been aware of my struggles with my other health issues and while I did not go into the details of my L.S., he made a "soft " suggestion, that counseling might help. My job very stressful and I have read that stress is not good for this disease, either. We will see. Good Luck and God Bless Sarb. Between counseling, my family and this forum, I'm hoping to gain acceptance of my condition. Right now, I feel like I'm grieving.

    • sarb73328
      sarb73328 maggie81413

      Posted

      Thanks Maggie, this is really helpful. I will look into the self referral. So far, I am not under a dermatology unit, but will ask GP about this also. - Best wishes to you, Sarb
    • sarb73328
      sarb73328 angela0180

      Posted

      Thank you. Sounds like you have excellent employers Angela. I hope your counseling goes well and certainly know that feeling of grieving.
    • maggie81413
      maggie81413 sarb73328

      Posted

      You're welcome Sarb. Although this is all new to me, I do realize the importance of having a Dermatology Consultant, and a specialist in this area of medicine. When I attended last week and got the correct diagnosis, I realized it was the Vulval Clinic. I have a follow-up appointment in March, and hope I will get these appointments thereafter, though maybe annually later on. Good luck to you.

    • chicks
      chicks angela0180

      Posted

      Sending a big hug all the way from Australia!!
  • chicks
    chicks maggie81413

    Posted

    Hi Maggie

    Welcome to the forum. I am sure you will get a lot of support, and friendship, from all the ladies here. It is really good not to feel alone with this horrible affliction. It sounds as if you are doing all the right things. Personally though I wouldn't use a steroid cream more than twice a week but others might not agree. I think I have over used it during a 30 year period and that is why my skin is so thin. I am now using and estrogen cream internally which is greatly helping my skin to heal.

    Good luck

    Chicks

    • maggie81413
      maggie81413 chicks

      Posted

      Thanks Chicks, other people's experience and advice is so helpful, so great to have support when trying to deal with this horrible condition. At the moment I'm following my dermatology consultants advice and along with emollients, I'm using hormone cream and steroid ointment more often to start with, but then the maintenance doses are both twice a week, and a Vagifem vaginal tablet twice a week. I'm also going to try borax too, see if that helps. Best Wishes x

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