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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

46 Replies

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  • eureka
    eureka SallyAnn63

    Posted

    SallyAnn63 I am in Australia so these posts go far and wide and are very supportive. Thankyou for posting as it means that many others get to read the replies...and if you pick up one hint that is helpful it can make a huge difference. Like many others I had this condition for many years before it was diagnosed...was always just noted as an infection..no one really cared about painful intercourse..they sympathasied when clearly having a pap smear was horrendous! I have not had severe itching, burning for almost a year now but intercourse is still not one of my favourite activities! I have a very caring, understanding husband. I actually cancelled my last appointment with my gyno as I was not having any problems but got a letter in the mail making sure that I was following up with someone..I have not been! I will now make another appointment...it is great to know that someone cares and I need a pap smear by somone who understands!
    • eureka
      eureka

      Posted

      All the best hope everything goes well with you.
    • cherylr
      cherylr eureka

      Posted

      Hi eureka, I'm in Australia too. I did the same thing, cancelled my appointment because I was feeling on top of it. My gynaecologist phoned me to say I need to be checked every 6 months because if the LS goes inside it can cause cancer. I am lucky I have a very caring gynaecologist, she is great.
    • eureka
      eureka cherylr

      Posted

      Wonder if we have the same one..an Indian lady?
    • cherylr
      cherylr eureka

      Posted

      Hi eureka, my gynae is in Port Macquarie, she isn't Indian, nice to know we have at least 2 caring gynae's.
  • SallyAnn63
    SallyAnn63

    Posted

    Again, thank you all for the kind and gentle words of support and advice. I'm feeling better this morning, although I haven't started moving about properly yet......

    I was diagnosed a month ago, by a gynae who was very professional with zero bedside manner shall we say. She talked over the top of me and rushed through the whole consultation, to her I was the last appointment of a long day, a silly teary post menopausal woman who needed to get a grip.

    She prescribed using "a good amount" (what's that?) of clobetasol to the affected areas (pay attention to the labia minora on the left side) and the every other day for a month, then twice a week. After this, the first month using it (I used a small pea-sized amount), paying attention as she directed, to an area I didn't actually have any discomfort in, I now have noticeably shrunken and terribly sore labia minora.

    I have also had a break-out of very tender "chin-rub" between my thighs (i have quite skinny legs which hardly touch at the top, this came on after wearing some loose trousers) and cannot wear knickers at all due to the grazing chaff lines I get around the leg hole area (literally, after just an hour, I'm hobbling).

    When I first went to the doctor, I was only having soreness after intercourse and pain when going to the toilet (I have LS around my bottom too, the joy.) I had self-treated the anus by the time I got my referral and it was much better (I used emu oil and pure aloe Vera) so I didn't use the steroid on it after the first few days and it is fine. My gut feeling is that the steroid ointment has made things worse. I see my new female GP on Thursday and will put this to her and also, after reading around this forum, ask for a referral to a dermatologist. The gynae wasn't interested in my bottom, she told me to go back to the GP about it. Obviously not her "department"!

    • SallyAnn63
      SallyAnn63

      Posted

      Ha ha, gotta love auto correct! Chub-Rub not chin rub!
    • cherylr
      cherylr SallyAnn63

      Posted

      I agree about the steroid ointment making it worse. I tried 4 different ointments/creams brfore one was found that didn't make me feel worse.
    • SallyAnn63
      SallyAnn63 cherylr

      Posted

      I feel as if the ointment has made the whole area around the top of my legs hyper sensitive.  What cream did you find was good for you cherylr?
    • Guppy007
      Guppy007 SallyAnn63

      Posted

      SallyAnn, what I have found was that the steroid cream worked well for me on and around my labia minora,  however when i used the steroid cream in and on the crack of my butt, and around my anus it made it worse, I had a huge flare up!  .I have found using something like a well known babys bottom cream does the trick,  i have a feeling the cream is too strong for those areas..thats my view.
    • Pansy_Twofoot
      Pansy_Twofoot SallyAnn63

      Posted

      I don't like how the doctor dismissed yo to go to a Dermatologist.  Not that he can't help, but it's in the same area.  My doctor didn't mention the area around my anus, but it itched.  Lets face it, it's quite a difficult area to look at on your own.  I put Clobetasol around the area, while doing the vaginal area and the discomfort has subsided.

      If your doctor is not helping you, I think it is time to change.  Not all personalities work.  I don't need a handholder, I just need someone to tell me the facts.  My GYN is 31, and she recognized my problem immediately.  I suggest you try a younger doctor, who has familiarity with this disease.  The mature doctors probably just don't have experience with this.

      I'm so sorry for all the trouble you are going through.  I completely understand,  I must have had this for 50 years before it was diagnosed.  My previous GYN just gave me the Clobetasol for my "itch", and never biopsied or explained anything,  I assumed it was nothing.  

      Look online at Vitals (dot) com and they list doctors, their education, patients reviews and so on.  If you are in S. Carolina, I can give you my new doctors number.  I'm happy we've met.

    • cherylr
      cherylr SallyAnn63

      Posted

      I can't remember the name of the one that my gynae gave me first, to get it under control. I am now on Advantan which is supposed to be daily, however I am concerned about long term use and I'm using it now only if needed.

      I like many others in here have changed my diet, no sugar, wheat and only lactose free milk occasionally.

      My diet has helped immensely, I was also diagnosed border line diabetic, hence the diet.

      All my medical problems have stemmed from stress, I now meditate & exercise most days or as often as possible. This and the diet have done the most good for my LS.

      I am 63 and have in the past had Bells Palsy, more recently 4 bouts of esophageal spasms, borderline diabetic and the LS, & in my case all caused by stress. I look back over my childhood and see even as a child I had high anxiety & stress. So for me the exercise & meditation are most important.

    • cherylr
      cherylr Guppy007

      Posted

      I found Sudocrem stopped the itch & soothed the whole area including around my anus.
    • Guppy007
      Guppy007 cherylr

      Posted

      Yes, it works well, I wanted to mention that but sometimes posts disappear when you mention a well known product.
    • Pansy_Twofoot
      Pansy_Twofoot Guppy007

      Posted

      I will have to look for that Sudocream.  My Raspberry Tea and Manuka bio active honey 20 plus arrived and I had my first cup yesterday.  It was delicious.  I also got the emu oil and coconut oil, but don't know in what order to apply it, or if you mix it.

      This is highly frustrating not having a bullet list of what to do and how to do it.  It is sad that after seeing my doctors for all these years, no one diagnosed it and one of my gyn's were a top notch NYC doctor.  I'll just keep researchinig.  Thank you Guppy007

    • Guppy007
      Guppy007 Pansy_Twofoot

      Posted

      Pansy, the two oils you have purchased are good to use on alternate days, as Lichen Sclerosus likes change. So, after using the bathroom to urinate you can spray your undercarriage with either a pinch of salt in a small bottle of water, or some women put a pinch of bicarbonate of soda in it.    After this dry, and apply one of the oils.  Always use one of the oils before bed as it is important especially around the labia minora area as it helps stop fusing. The Manuka honey is sometimes used on cuts and sores..some women have had success with it.  

       

    • Pansy_Twofoot
      Pansy_Twofoot Guppy007

      Posted

      Oh, I put the Manuka honey in my tea!  It was delicious.  That's one of the problems about this disease, that there is no clear list that I have found of symptoms, diagnoses and treatments with directions.   Are you supposed to put the Manuka honey on the vagina? Can you dilute it for another spray bottle or can you mix it with an oil? 

      I tend to urinate frequently, as I'm drinking loads of water.  Perhaps I should keep a tube of Sudocrem in my handbag for the in-between times. Can you tell me where you researched your information on LS?

    • lauren33630
      lauren33630 Pansy_Twofoot

      Posted

      Pansy I think because LS effects women so differently and because as huppy mentions it gets 'ysed' to certain treatements it really differs for everybody. A lot of people use the oils as barriers from urination if that is a problem... or as nessecary depending on what you find gives you relief according to your own symtoms. Personally I tend to use the coconut oil (Very sparingly as a tiny bit goes a long, long way) to wash with, or to moisturise with between flare-ups. I find it to be a good moisturiser - wheras for me the emu oil tends to give me more instant relief when I am sore or itching. But it's good to alternate. 

      As for mankua honey.. I'd heard people use it - but it's news to me that it's good for broken skin. I tend to suffer a lot with cuts so I will probably try this at some point... I'd imagine you would just put it straight on to your skin. 

    • Guppy007
      Guppy007 Pansy_Twofoot

      Posted

      Hi, If you go to the top of the page, and click on' Lichen Sclerosus', which is next to 'mens health' it will take you to a menu of many posts by many other women, posted over the last few months/years.  As you look through those you will  find a lot of interesting information, and thats where I learned a lot with regard to LS, and also through my own experience of experimenting.  There is the newbies section to look at as well. 

      The Manuka honey is for eating, but some women have also found it has helped with stubborn sores/cuts, I've not used it in that area, but some women have, and you dont dilute it, you just apply a little if you need it... anyway I thought I would mention it, to be honest its not something that many women use, its kind of like a last resort thing if you cant get relief from the creams..

      Sudocrem is often used for rashes, the kind of red bumpy rash that sometimes occurs with LS and for me it is usually in the crack of my butt, and thats where I found the creams like Sudafed work best.  I know its confusing, but speaking for myself I have found the steroid cream works for the Vjay, and Sudafed (or something similar works) for areas around the Vagina, as I found the steroid cream too strong for those areas.

      On a completely separate matter I was wondering where has Morrill got to?   I miss seeing her posts x

       

    • lynne1945
      lynne1945 Guppy007

      Posted

      Me too. I miss Morrell and her common sense and helpful posts. She was the first person to welcome me here, and many others too. I thought she was the moderator for months lol. 

      Hope she's having such a good remission she's off doing stuff and having a life free of symptoms. X

       

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