Early stage Lichen Sclerosus and vulvodynia
Posted , 6 users are following.
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
0 likes, 10 replies
kathleen65757 samantha1970
Posted
glyn186 samantha1970
Posted
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.
samantha1970 glyn186
Posted
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
Guppy007 samantha1970
Posted
samantha1970 Guppy007
Posted
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.
Chrisy samantha1970
Posted
samantha1970 Chrisy
Posted
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.
Chrisy samantha1970
Posted
samantha1970 Chrisy
Posted
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
Morrell1951 samantha1970
Posted
Do find a doctor who knows more about LS.