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Is this Lichen Sclerosus? Please help!

Posted , 9 users are following.

jessica92707
jessica92707

I've had vaginal itching for around two years now, as with most posts I've read I've been told it's just thrush but then I've been tested for that twice now and both tests came back negative. The GUM clinic said it could just be an allergy or thrush of the vulva (if that is even possible?). I have no discharge, other than the normal. It's red near the labia but not exactly bright red. I have small spots but I've googled those before (I can't remember what they're called but they're normal- so google tells me anyway) and whenever I've had an examination then I've been told it looks normal and healthy. 

The GUM clinic gave me some thrush cream that also had steriod cream in it and I used that for about six weeks and since then the itching has been much improved. I think it seems to get worse with stress. I don't have any lumps or any white marks or anything which peple seem to say are symptoms of Lichen Schlerosus. The fact that it went away with the steriod cream could suggest it's some sort of allergy but I just don't know what to? I have noticed that if I wear no knickers (under a long skirt) then there is hardly any itching at all. 

I am currently going through a panic of health anxiety so I can't stop googling these symptoms and it all seems to leads to some sort of cancer so I'm petrified it could be that. 

I'm in the UK and I've booked a doctors appointment for Monday where I will ask to be referred because I've had enough of this now. I just wondered if anyone had any ideas or had been through similar? 

Thanks! 

0 likes, 57 replies

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  • claire12259
    claire12259 jessica92707

    Posted

    Hi Jessica,

    where are you in uk? If you are near to London I would recommend asking your GP to refer you to see Wendy Reid at the Royal Free hospital in Hampstead Heath.  She specialises in LS and other vulvar related problems. You may have to wait 2-3 months tho. Good luck xxx

    • jessica92707
      jessica92707 claire12259

      Posted

      Hi Claire, 

      I'm in Hertfordshire so near London. That's great info, thank you. Have you been to see her before? 

    • claire12259
      claire12259 jessica92707

      Posted

      Hiya, yes I have seen her twice and a member of the vulvar specialist team.Both were very nice, very understanding. She didnt do a biopsy cos she said there wasnt any point as she could see it was LS. I was on steriods for a while but then they stopped working and actually irritated the LS. I put myself on a dairy/gluten/sugar free diet which actually put the LS into remission, so I have actually been signed off for the mo as all is OK (touch wood!). Dr Reid was very pleased and said that there hasnt been enough research into dietary changes but she was very happy they had worked for me and was very open to the notion that the diet was helpful. I hope you get a appointment in the near future. I guess the other thing you could do would be to telephone the RFH and ask to speak to someone in the clinic and see if they could refer you to a LS specialist nearer to you. But if you dont mind travelling I think it would definately be worth the effort. BTW when I saw another consultant there I did briefly ask them about stem cell treatment which she said they do there if the LS is bad. Anyway, good luck, hope you get some answers soon. 
    • jessica92707
      jessica92707 claire12259

      Posted

      Thank you so much. You've been very helpful. Do you hope to one day be able to eat whatever you like?

      What were you symptoms if you don't mind me asking?

    • claire12259
      claire12259 jessica92707

      Posted

      Oh yes! Would love to eat whatever, but I also have a very sensitive bladder so I have to avoid stuff for that too! (chocolate, tea, coffee, citrus etc). I do cheat when out for a meal and it doesnt effect it too much. I think as long as I am good 80% of the time, that works for me. For others, tho, as soon as they have sugar it can bring on a massive flare. Mine was mainly itching and discomfort. I also had the white skin that comes with LS.
  • Guppy007
    Guppy007 jessica92707

    Posted

    Jessica, have you thought about having a biopsy done, that would resolve your uncertainty?  

    The clues in your post are the constant itching and the spots that you refer to.  Where are these spots, is it a rash? I am asking as sometimes women with LS do get a rash of red spots, often slightly away from the vagina, sometimes running up and into the crack of the bottom.  

    Cancer is rare, and usually because women have not been looked at before, it's really not something I even think about.

    • jessica92707
      jessica92707 Guppy007

      Posted

      Hi Guppy, 

      Yes that's what I am going to request from my GP on Monday. Well make sure they send me to thr gith person anyway. 

      The spots are called fordyce spots - I am sure they're normal. I have them on my lips too if I stretch them so I'm sure they're normal. So it's just the constant itching. Sex isn't painful at all, it never has been. 

      Yes this is true. I have had it looked at a few times and don't have any large bumps or anything. 

    • Guppy007
      Guppy007 jessica92707

      Posted

      I think that's a good idea.

      I think that if you have not got LS then it is possible you are reacting to something you are eating, maybe think about having some allergy tests done.

  • ada31026
    ada31026 jessica92707

    Posted

    Hi, Jessica,

    What is the name of the thrush cream you used to alleviate the itching?

    I would like to check it out.  The itching condition prompts me to scratch, cannot avoid it and so the cycle continues.  I have been using apple cider vinegar and baking soda without any improvement.  Also, swimming in the ocean lately.  Still, no improvement.  If only the itching could be tamed, perhaps the situation could start to calm down and possibly heal.  Thanks so much for this new insight and ray of hope.

     

    • jessica92707
      jessica92707 ada31026

      Posted

      Hello smile

      I'm so sorry but I don't know, I was given it from the clinic and I looked online for it but couldn't find it. It was in a white box and white tube. I know it contained hydrocortisone though. I went back to the gum clinic and was given a tube of just hydrocortisone so I'll let you know how that goes.

    • ada31026
      ada31026 jessica92707

      Posted

      I am in Swizerland.  So, if you still have the tube, send what the ingredients are and I could find something close enough.  Thanks so much, Jessica.

       

  • Jessicat
    Jessicat jessica92707

    Posted

    Hi you're symptoms sound quite similiar to mine when i first had them. I had vulval itching and redness that was better when I wasn't wearing anything down there. It seems that the slight steroid improved your symptoms it may be LS, the dermatologist that diagnosed me did it by a sort of trial and error, where he gave me a very strong steroid cream and if there was improvement he would go from there. It's a good idea to be referred to a specialist as I was passed from gp to gp for a while as they didn't have a clue what was wrong before I asked to be referred. I'm also in the uk 
    • jessica92707
      jessica92707 Jessicat

      Posted

      Yes maybe. But it was thrush cream with the steroid which makes me think it could be something different. It's just so confusing. Hopefully seeing a specialist will help.
  • cath38279
    cath38279 jessica92707

    Posted

    What you've described is exactly what I have. I'm waiting for my appointment with a vulval dermatologist, and am hoping she will know what it is. Nothing really to see, but itchy all over the area, been tested for thrush and other obvious things, and all negative. Even having a bath or shower seems to aggravate it, The first few weeks on a strong steroid really helped, but then it stopped working.
    • jessica92707
      jessica92707 cath38279

      Posted

      Do you think it could be LS or have you been told that it's not? Where are you based?

      Days where I wear no underwear the itching is pretty much non existent. Showers don't seem to make much difference but baths do make it worse.

    • cath38279
      cath38279 jessica92707

      Posted

      I'm in Surrey. My GP thought it was LS, which is why she prescribed the steroid, but I wasn't totally convinced. I guess they'll biopsy if the dermatologist thinks it is. No underwear is a bit better, but it hasn't gone away in the past 18 months - I haven't had a single day without it itching! It's always worse for me in bed at night, so I think the heat is an issue. It started with me when I put on a bit of weight (less than a stone) and I assumed that once I lost the weight (which I nearly have), the itch would go, but it hasn't. I do wonder if it might be a fungal thing, as I've always had problems with athlete's foot! I changed all my washing powders, and cut out fabric conditioner altogether, but that hasn't helped. The only thing left for me is to give up wine! Agh!
    • jessica92707
      jessica92707 cath38279

      Posted

      Oh no. That's awful. Mine hasn't been every day and it's not constant. It's not worse at night either. It's itchy but it's not so bad I have to scratch it ever really. I've suffered from fungal toenails which makes me think it could be to do that with too. Also it seemed to come from thrush, I treated the thrush and everything else went away apart from the itch.
    • cath38279
      cath38279 jessica92707

      Posted

      That's interesting to know. I wonder if it is a fungal skin thing. Seeing the specialist in May, so I'll let you know how I get on. 
    • jessica92707
      jessica92707 cath38279

      Posted

      I'm thinking it could be. It seems to be worse when I've eaten sugar too as other people have said and I know that candida thrives off sugar. However when researching I also saw something about your wee containing glucose, I think this is something to do with diabetes but then this did get me thinking.

      Yes please do keep me updated! I'll keep you updated too. It's such a long wait.

    • sandra01720
      sandra01720 jessica92707

      Posted

      Do you wear 100% cotton white underwear? You may be allergic to other fibers or the colour.
    • jessica92707
      jessica92707 sandra01720

      Posted

      I'm not sure, I doubt they're 100% cotton though. What would show this to be the case?
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