Early stage Lichen Sclerosus and vulvodynia

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Hi,

Is there such a thing as early stage LS?

ive had a pain/discomfort (not really an itch as I never wanted to scratch) in the vulva area (particularly right labia) since my hysterectomy 3 years ago. In December/January this year I had a biopsy and three white areas showed up, one area was diagnosed as "in keeping with LS" the other two were either acanthosis/parakeratosis with chronic inflammation.

In January I started with dermovate issued by GP. I finally visited the vulva dermatologist end of April and the consultant said the left labia had shrunk (but still a little left). Due to having HPV she wanted to change my dermovate to betnovate. I started using betnovate. The pain/discomfort never went away. I finally got back in to see the consultant last Week as I felt the betnovate was not doing anything as the pain/discomfort was still there, 

the consultant decided she thought I did not have LS and that I had vulvodynia. Changed my medication to lidocaine. The lidocaine on the right labia has really helped. The consultant asked me to stop using the betnovate.

But, I still have a red sore patch and a mild pain/discomfort which comes and goes in other areas. I still have some white patches. 

The consultant showed me a presentation she did and some pictures of LS - she said she couldn't see any of these signs on me and that she didn't think the biopsy (which was done in another country) was right, even though I can see some white with the magnifying mirror and it's clear to me too that the left labia has shrunk into itself.

im wondering if I have early stage LS. Should I use betnovate a couple of times a week for maintenance and keep an eye on it?

im due back at the clinic in January, any thoughts would be appreciated. 

Thanks,

Samantha

 

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10 Replies

  • Posted

    I would probably stick with your specialist. Maybe see her more often so she can continue to monitor and develop a plan to manage your condition. We are not doctors and cannot advise you. Treatment does change as time passes. If you do not trust this specialist maybe see another. All the best.
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  • Posted

    Hi all

    I'm really confused now. I don't have any white patches yet my consultant says it LS. I'm really swollen and at the very edges on both sides it is rally dry and cracked. I get chronic pain in the pubic bone area and inside. Got to do another 3 months on the dermavate ointment and then go back prob for a biopsy. Has anyone had a biopsy? What do they actually do. I am extremely needle phobic and I am very anxious about the procedure.

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    • Posted

      Hi,

      I had three biopsies at once as the colposcopy noticed three separate white patches. First the doctor injected each site with an anaesthetic and then cut the skin which I was unable to feel. One of the biopsies was a good size and required 3-4 stitches. Due to the location one stitch burst. This was ok as the other stitches held the skin together and just made the scar a little wider at that point. The anaesthetic hurt for me. The healing took 2-3 weeks for the pain to disappear but I think this may be because I had 3 biopsies.

      Good luck

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  • Posted

    Samantha, it sounds like Lichen Schlerosus to me...the thing is that you wont be the first to be misdiagnosed, and so I would look for a second opinion, someone that listens, and listens carefully.   I also think you might need another biopsy to be honest.....sorry your having to go through this.
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    • Posted

      Hi Guppy,

      thanks, when they did the colposcopy it was interesting as the area I was having the pain/discomfort didn't turn white, this is why the vulva derma thought it was vulvodynia. But yes, I think your right about the LS, that's why I was wondering if early stage.

      i think for now I will use the betnovate 2x a week and try and get a second opinion. I know I can get one beginning of September, but not sure if I can before that.

      thanks for your advice.

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    • Posted

      Hi Samantha you may find it useful to listen to Dr Goldstein's webinair posted at the beginning of this forum.  It is a pinned post, New to Ls start here.  The talk lasts for about an hour but is so informative about the treatment we require and what actions we need to take.  Well worth listening to if you haven't already.  You will be better informed when you next visit.  Good luck.
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    • Posted

      Hi Chrisy,

      I have listened/watched the webinar before. Many questions are left unanswered. As I also have HPV treatment for people like me is not covered here. It doesn't help when the vulva specialist questions biopsy results.

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    • Posted

      Hi Samantha,  I did not have white patches at first when I was so sore and tearing.  It was only after treatment with steroid to calm the soreness that the white patches became visible.  I now believe that I have atrophied due to the amount of steroid I used before I knew better.  It is a horrible condition to suffer.  Trying to find someone who knows what it is and how to treat it is difficult because I don't think anyone really knows how.  Even Dr. Goldstein is just another opinion.  A very well informed one though.  We have to do what makes us comfortable and importantly watch for any changes and get those checked out.  This site is amazing for the amount of helpful advice it provides from other sufferers.  I think until a cure is found we are all going to have to use trial and error to find our own best treatment.
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    • Posted

      Hi Chrisy,

      i don't appear to have any tears. I just have red sore patches that come and go maybe very 2-3 days and an irritation. This is why I wondered if it was early stages.

      thanks, if I get chance before heading on holiday next week I'll try and re watch the video. I am seeing my other vulva dermatologist in September (I live in two countries so have one in both) and will see what he says.

      Samantha

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    • Posted

      Samantha, I've had LS for 40 years and I don't think it's really about stages, but about flares and remissions. White patches are classic, but not the only symptom. To make it more complicated, yeast and LS seem to cycle with each other. If I get a sore red patch, especially from sex, I just use a dab of Canesten cream left over from the last time I had a fullblown yeast infection.

      Do find a doctor who knows more about LS.

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