Undiagnosed Litchen schlerosus

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Hello,

I was reffered to gyny/dermatology clinic as my gp thought I had Litchen Schlerosus and it took me a long time to pluck up the courage to see gp. The gyny asked me no questions at all simply took a look and  thought it was LS aswell but did a biopsy and has said the biopsy is clear so it must be eczema and to use vaseline and discharged me.

Ive been in tears tonight as I still have no proper diagnosis and vaseline is not helping. The itching soreness and pain in my vulva and bottom plus lots of white and black skin discolouration is making me depressed along with constant cystitus and other medical issues (fibro,rheumatoid arthritus, chronic spinal problems plus blood disorder and anemia needing iron transfusions).

Please can anybody offer me any advice as i was so sure it was LS ive never suffered with eczema and my skin does not look like it has eczema.

Many thanks

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15 Replies

  • Posted

    Vicki, so sorry what you're going thru. Dr. didn't give you a steroid cream to quiet things down? He should have. I think you need another opinion. Biopsies aren't always right. I've been using Borax(20 Mule Team Borax) in laundry isle at your store.

    I put 2 teaspoons in a 4 cup bottle, shake it until it dissolves. Use on the area a few times a day. Works for a lot of people. Should try it. But do get a 2nd opinion.

    This is a horrible disease & you need answers.

    Good luck to you.

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  • Posted

    Hi Vicki,

    As Helen said, biopsies aren't always accurate.  Read the thread, An Experiment with Borax.  Also, try soaking in a tub with 1/3 cup of baking soda.  The itching will go away almost immediately.

    Many of us have multiple auto-immune disorders.  Seems like if you have one,  you're prone to others.  Good luck, and if you follow the advice on sodium borate (borax) you will get better.

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  • Posted

    My DEar I feel I was you out i woukf go back to your doctor and Ask to be referred to a dermatologist they will know what's wrong and give you the treatment you need vasaline is no good 

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  • Posted

    Thankyou so much for your help ladies, il defo try what you have suggested, I spoke to the hospital this morning and said I was not happy with being discharged with no treatment or follow up care and was told my biopsy came back as “ chronic eczema type lesions” and was told that I defo do not have LS as the biopsy says so? 

    I said if vaseline worked then I would not have the problem still after 10 years or so of suffering.

    I dont use lotions or bubble baths etc never have done and always shower daily. The problem is getting worse as I get older and I havent started my menopause yet either(am 45).

    The lady said she would speak to the Gyny and call me back but Im also wondering would I be better to ask to see a Dermatologist rather than the Gyny they have put me under? 

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  • Posted

    I would strongly advise a second opinion. Vaseline is not the right thing to use anyway. Try Coconut oil or Emu oil. I use a mixture of 4 tablesppons of Organic Castor Oil, 1 DROP of Lemon Grass Essence and 2 DROPS of Lavender Essence Oil. Be very careful not to exceed the drops of the oils and use a small dropper. Also try spraying some pure Borax. Mix 1/8tsp in a cup of warm water. Be careful what you wash your underwear in and use a gentle soap and perfumeless toilet paper.

    You can also use baby creams like Desitin and Fissan Paste

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  • Posted

    You poor thing. I think lots of us including me recognize the 'casual' approach of your gynae. Perhaps you could ask to be referred to another one or a dermatologist (given they think it's merely eczema) for a proper examination?

    Meanwhile try coconut oil, emu aid ointment (buy online) and read about the borax experiment on here. All these things are helping me as well as a steroid cream (betnovate) on prescription which took a long time to get from my GP. Good luck and take some small comfort from all of us on here. 

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  • Posted

    Hi Vicky, you poor love, your cup REALLY runneth over health wise ! I would go back to your Dr and insist you see a dermatologist , you sounds like you have all the signs of LS to me ! Maybe you could get an over the counter steroid like hydrocortisone , it may help till you get to see the gynae/dermatologist. Make sure to spray with water or bicarb and water or borax and water after you use the loo as urine irritates and dried the area. I use HYDROMOL as a barrier cream and moisturiser, that makes you feel comfortable straight way. Don't let area dry out. The pain you are is not typical of LS d go you may have another condition as well as the LS. You dinner get pain will eczema either so how come the gynae didn't look into that. ?!! And use VASELINE, A PETRO CHEMICAL !!! RIDICULOUS ! Stay well away from it. A whole lot of us have had very poor experiences with our so called medical professionals too, you are not alone my lovely. Well done you for ringing the hospital, don't settle for sub standard treatment or on your case - no damn treatment. It's appalling. Another tip, try to limit or cut out sugar as this causes flare ups in many of us, as does stress ...... pity the medics are the ones CAUSING the stress in many cases !!! Good luck and let is know how you get on. x

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  • Posted

    Vicki, 

    Please get a second opinion! As everyone has said, biopsies are not always right. if there are any vulvar specialists near you please make an appointment with one. You definitely need a second opinion! Not a lot of docs are knowledgeable about LS. The first one I went to treated me for fungal inflectional for about four months and it wasn't until the white patches showed up that he did biopsy. I had to ask for steroid cream! I quickly found a vulvar specialist when the diagnosis was LS and have been with her ever since. My prayers go out to you.

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  • Posted

    Hi, I agree with everyone that you need a second opinion as many "Specialists" are actually clueless when it comes to LS.  I think you need to look for a vulvar specialist which might mean some traveling otherwise you may be asked to go through another biopsy which is the last thing you want.  A specialist that is familiar with LS should be able to give you a visual diagnosis if you are showing typical LS symptoms.  Typical symptoms of LS are white plaques of skin on the labia minora, and around it, cuts, like paper cuts in and around the vagina, often in the crack of your butt.  Red spots/rashes, bruised dark skin, sores, like ulcers.  On top of all that there is the itching to contend with....do you have some of those symptoms?  

    In the meantime, I would bathe regularly, try putting a little coconut oil/emu oil on to soothe things down there until you get a firm diagnosis and then you will be given some cream to use which should help.

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    • Posted

      Hi Guppy, I agree specialists are clueless and when I asked my GP about LS specialists, she said gynaes and dermatologists both are, which I find hard to believe especially after reading some of the comments on this forum. I second the use of coconut and emu oil and swabbing with borax solution. 

      Interestingly,  I don't have those typical symptoms at all. I have itching/irritation and fusing which is happening rapidly. No cuts, no white patches. So unless I have been misdiagnosed (which I haven't ruled out!), I think LS symptoms must vary in all of us - another thing not pointed up by doctors.

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    • Posted

      I have/had all of the above.... itching/irritation/fusing/cuts/white patches/"moles" and just feeling sore in places. The itching and soreness have mostly gone now and my skin is looking pinker and more healthy than it has been for a very long time. I have to watch the fusing. Now using estrogen cream, Castor oil mixture and a Borax spray.

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    • Posted

      Hi sarb, I think that there are some doctors out there that are familiar with LS but the problem is finding them, which is why it is always best to try to find a Vulvar clinic as otherwise you are often given the run around rather than admit that they don't actually know whats wrong. 

      From what you say it sounds like you have LS but it is unusual not to have the white plaques of skin, but then again we all have different symptoms, which come and go.  When I first noticed the white plaques of skin, after just one treatment they went, never to return, and that is unusual too...so I guess we are lucky on that score! 

      Also, there are two different types of itching..external itching which I have experienced, and then there is the dreaded internal itch that some women get and it is probably, in my opinion, the very worst symptom of LS.  I have only experienced it once and it was truly awful!!

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  • Posted

    Hello Vicki, sorry you've joined the club, but this forum is the best place for advice and support. Are you in the UK? there are several vulval-dermatology clinics which are experienced with LS. The general advice seems to be that dermatologist are better than Gynaes. I also saw several Gynaes who didn't diagnose it, then was referred to a vulval dermatology clinic by a new doctor. If you say what area you are in maybe people can help with what services/specialists are in their area. Also make a cup of tea and read through the thread 'an experiment with borax' many of us have found relief from it. Hugs.

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  • Posted

    Thankyou for all of your very helpful replies, I did complain to the hospital and have been given an appointment to see a dermatologist next Friday and have been given a prescription for some Dermovate by the same doctor which is confusing as I was told to simply use vaseline by the doctor as I didnt need any treatment despite chronic soreness! 

    Im pretty sure I do have LS as I have chronic itching , white raised patches, red ones and many bruised sore looking areas, paper like cuts which extends all the way to my bottom area. 

    I dont know if the dermatologist will be of any help but I will post up after I see her. I was told the biopsy results say on paper “chronic eczema type lesions” so this is why I was told its eczema? 

    I thought the biopsys had been done just to rule out skin cancer  etc.

    Has any one else had biopsys come back the same with LS? 

    Many thanks

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