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Lichen Sclerosus

Posted , 18 users are following.

SallyAnn63
SallyAnn63

I'm so relieved to find an online voice to be able to express my utter despair and sadness around this humiliating condition. I have a wonderfully caring and loyal husband who would chastise me for my feelings of indignity now that I am forced onto sharing details relating to my deteriorating and painful "Lady Garden". I absolutely hate the fact that I have to say no to sex, no to an evening walk, no to a bike ride up to the pub. That all the sensual mystery and allure is gone, due to the clinical facts and diagnosis of this most unladylike and debilitating condition. I feel stripped of my femininity which hurts me more than the hot-coal between the legs burning pain which strikes so hard it reduces me to floods of tears in Tescos car park.

1 like, 46 replies

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  • Guppy007
    Guppy007 SallyAnn63

    Posted

    Hi Sally Ann, sorry you have had to join us.  It is a terrible condition to have, but manageable once you know what foods to avoid and how to make sure it doesn't become worse.  Have you recently been diagnosed?, because that is when it really hits and it is quite devastating at first, but as I said things become better over time, the key is to read as much as you can on the subject.
    • SallyAnn63
      SallyAnn63 Guppy007

      Posted

      I can't thank you enough for replying Guppy07, I was rather negative I know, and reading through people's posts, I see so much posititivity and good advice that I felt rather guilty for my defeatist post. My apologies.

      Yes, diagnosed a month ago and feeling that the steroids have made things worse, has anyone else experienced this?

    • claire12259
      claire12259 SallyAnn63

      Posted

      Hi SallyAnn,

      I too cannot use steriods or anything topical as it just aggrevates the condition. My LS is now in remission through me changing my diet only. I went sugar/gluten/dairy free. I think the worse culprit is sugar (for me). You will find many ladies on here have had fantastic results just by changing their diet. Its easyish (!!!) and well worth the results. I would say I found really good results in 2-3 weeks. I think its an easy change to make before you try maybe more expensive creams/treatments etc.  If  you find it doesnt work, you will definitely find an answer from someone on here. Are you in the UK? There are a few medical procedures you can try, albeit quite expensive ones. Good luck and dont give up. Im sure you will find your cure, it may just take a little while to find out what works for you XXX

  • Jackiem26
    Jackiem26 SallyAnn63

    Posted

    It's true Sally it does get better with time. I was diagnosed a year ago, after four years of pain and agonising itching , and lots of fusing,  and my doctor doing nothing but prescribing me canniston. This forum has really helped, I started using bicarbonate of soda to wash and Terrasil morning and night (which has been like magic), and clob once per week for Maintainance and I haven't had a breakout for 3 months , there is some hope X
    • SallyAnn63
      SallyAnn63 Jackiem26

      Posted

      Thank you very much Jackiem26 for your advice, I will certainly look into bicarbonate of soda and terrasil. Any port in a storm. I have recently moved and have (thankfully) been able to change GP, I have an appointment on Thursday when I intend to ask for an appointment with a dermatologist (my appointment with the gynaecologist was a disaster). Thank you again x
    • Jackiem26
      Jackiem26 SallyAnn63

      Posted

      My gyni appointment was also a disaster, my doctor shouted across the waiting room not the nurse ' this lady in here would like some info on lichen sclerosis' I was devastated and ran out of the clininc, it's bad enough getting the diagnosis without the world knowing about it. The info they gave me was very basic and didn't tell me anything about cutting out sugar, this forum is the best thing I've ever tried, I nolonger feel alone, it's not something you can talk to people about, when they don't know anything about it x

       

    • Okpeeps
      Okpeeps Jackiem26

      Posted

      Horrendous experience. Can you imagine if that had been a man in there with info required on erectile malfunction !!! It would be on the news !!!

      No wonder you ran out of there. I sometimes think they see so many patients that they themselves forget compassion and normal human decency. I do hope you don't ever experience anything like that again x

    • Guppy007
      Guppy007 Jackiem26

      Posted

      As already mentioned the key to resuming an almost normal life is to look at your diet...Sugar first, that's the killer for people with LS.  I cant stress that enough, and if you have no luck with that you will need to look at Gluten and then Dairy, but start off with sugar, and if you stick with it you will notice a differece quite quickly.
  • Okpeeps
    Okpeeps SallyAnn63

    Posted

    My heart goes out to you. It takes a lot of work to come to terms with this and a lot of learning but you will find a way back to some comfort. A caring partner is just wonderful and although I can't spell things out on here there are other ways to 'show affection' if you catch my drift. Keep reading up on this condition and seriously over time you will find your way of what works for you. This forum is an absolute godsend as I had never heard of this.... Couldn't believe this condition existed. I'm down to Clobetasol twice a week for maintenance only. This is very important .... We can't just use it when there is a flare up. Anyway it works for me along with strict rituals when toilet ing and showering plus coconut oil to keep in good condition

    I hope you find relief and can get back to some sort of normality ..... Hang in there xx

    • SallyAnn63
      SallyAnn63 Okpeeps

      Posted

      Okpeeps, the worst part for me has been to have to discuss such things with my most intimate friend, my lover of 30 years, whose romantic and sexual love has been constant and truly loyal for all this time. So now in these later years of our relationship, we find ourselves discussing daily, my pain levels and discomforts when once we were preoccupied with lusty and flirtatious exchanges. Yes, we do find ways to maintain intimacy but it is still a substitute for the real thing, and I mourn its loss.

      Thank you for your kind words and I do usually feel optimistic and positive, I've just had such a pain filled day that I needed to bemoan my fate. I'll not make a habit of it!

    • Okpeeps
      Okpeeps SallyAnn63

      Posted

      Just you moan / let off steam/ share on here. That's why we're all here... You take care and the others on here will help you through. We all get truly bad days now and again so it's good to know we have somewhere and someone to share this with. You're so right.... You can't sit and discuss this with friends..... No matter how close they are.... If they know nothing about it they can't really help can they ?

      Onwards and upwards xx

  • Lodge
    Lodge SallyAnn63

    Posted

    Hi Sally Ann,

    I can completely empathise with you.  I went to my GP over a period of a couple of years due to soreness and sex becoming very painful.  He said he couldn't see anything wrong and basically just put it down to vaginal dryness as a result of being post-menopause.  By the time I was told what it was, just about everything had disappearedcry

    Please don't despair, the cream did really help after a couple of months, but I haven't had sex for well over a year now - in fact probably only about ten times in total over the past six years and that makes me very sad.  It is awful when you reach the point that you simply cannot face the pain of even trying and then the disappointment for both of you.

    I would like to see a gynae again (its been nearly five years now) just to try and find out if there is anything else that would help.

     

    • SallyAnn63
      SallyAnn63 Lodge

      Posted

      I'm humbled and overwhelmed by people's heartfelt honesty and sharing here, it's reduced me to tears. Thank you dearest Lodge, how brave you are. I truly hope you will find a way forward, as I look round this forum, I see that there is a wealth of advice and support here. 🙂
  • joe41286
    joe41286 SallyAnn63

    Posted

    I completely empathise, all of that is so true to how I feel, I wish all doctors could read your post!
  • cherylr
    cherylr SallyAnn63

    Posted

    Hi SallyAnn, I too felt so overwhelmed when diagnosed that I broke down in tears when my lovely Gynaecologist told me. I'm lucky in that regard though because she, my Gynaecologist is very empathetic and caring. I did have to constantly push my GP to refer me to a Gynae & I also empatically stated that I only wanted a woman Gynae. I've also changed GP's and now have a female GP.

    I don't know if LS has anything to do with early menopause, I started at 40 and that was also a terrible loss to my "womanhood" psychologically and very badly handled also by a male GP.

    9 months ago I started on a big health kick. I've lost weight, no sugar, wheat, only lactose free milk occasionally.

    I ride my pushbike a few times a week, go to the gym a couple times a week and walk as much as possible. Even though it can cause irritation I don't let it stop my exercise.

    Right now I only have very minor irritation. My main concern is a constant swollen clitoris which I believe has been caused by the daily use of Advantan. I see my gynae soon and will discuss that. In the meantime I am only using the Advantan when I feel it is necessary.

    I too have fused bits and look nothing like I once did. I have tried all sorts of natural creams, oils etc. At the moment I use a natural bush remedy used by my Australian Aboriginal mothers for generations. It is Gumby Gumby leaf made into a balm. I also take a capsule of it each day, from Golden Gumby Gumby.

    I was devestated when first diagnosed, much better now and I discuss it with anyone who has autoimmune and stress related disorders.

    Good luck.

    • Guppy007
      Guppy007 cherylr

      Posted

      Cherylr, I dont use the steriod cream unless I need it, which means it is only used in a flare up, I am one of those that dont believe you need to apply the steroid cream for maintenance, if you have NO SYMPTOMS..only when you flare.  When I have problems with my clit area I apply the cream and after a few days I am back to normal. I Just thought I would mention this.
    • cherylr
      cherylr Guppy007

      Posted

      Thank you Guppy007, that's what I've now decided to do to.

      At the moment I am soaking in our beautiful Artesian Bore mineral bath, the mineral water appears to be helping my LS immensely and my other scaly skin problems have cleared up to. I'm really feeling great at the moment. 😊💜

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