I wanted to join the women's group for lichen s. Not sure I am in it or not but hope so.
All I read on it say I should have white patches and itch - neither of which is happening but I do feel burning and soreness. A coloscopy is planned in July so maybe that will diagnose what it is more accurately. Or does it sometimes occur without actual itching?
Hi I have Ls with no white patches although I do get the itch if I have a flare up. When I'm in flare up I look very red and swollen. And I fell like I have paper cuts. Ls seems to have many symptoms so I think it's a good idea your having a biopsy. Apparently Ls doesn't show in a biopsy if your using a steroid so check with your doctor if he has given you this.
I had to have biopsies taken from my vulva diagnose the LS.
Sarah
you are definitely in a group that will help you with your questions. LS is not strictly a women's disease, men also get it. There are men here at times but mainly women using this group.
Maybe best not to diagnose yourself, Sarah. Wait until you get results back and / or see a specialist dermatologist who will recognise what it is
(usually by sight.) Do you have vaginal symptoms as colposcopy is used to see inside.
I have symptoms like you but I have eroding Lichen Planus of vulval area. No itching, no white plaques. But some people with LS also don't have itching. Sometimes it takes a while to get a proper diagnosis. Keep pushing. You have to be proactive with this condition, nobody who doesn't have it can imagine for a moment how it can effect your whole life.
good luck. Sorry you have to be here.
thanks so much for replies. Good to know there are others out there who reply. I was told I was going to have a colcoscopy on the phone when I booked the appointmenet but the consultant has written Vulval Biopsy on the form that I signed! Confused. I am not down to have this until July so I guess they are not suspecting anything sinister is going on.
I didn't know that using a steroid cream will mean the LS will not show up on the biopsy - my dr has told me to use it in the meantime between now and the biopsy in July.
After the consultant examining me I was in great pain the following day - he only felt around, didn't do much really! The burning sensation was all over the outside and up towards where the clit is too. Very worrying for me. The pain is all outside, none inside but then I am not having sex so who knows.
Did it hurt, Cherylr? How long did it take to recuperate?
Check with your doctor about steroid and biopsy as that's something I've heard and I'm not medical so if I was you I would get a medical opinion about it
Thanks, I will - but she suggested using it so I may ask another doctor.
Sounds like a plan good luck x
Hi Sarah... for over a year I was tested, tested some more and made to feel like I was crazy because I wasnt diagnosed... I didnt have the white patches! After about a year and a bit... a tiiiiiny area started to pale, the perinium (sp??), but only barely!
If this tiny patch of skin hadnt coloured after so long I would still be going crazy and thinknig I had recurring thrush/herpes. My main issues were with skin breaking - as you said like little paper cuts... but i wasnt vigorously wiping or having sex to cause them. And a change of texture in my skin... like rough saw patches, usually in the same places.
I wonder if the pain after your exam was the result of the lube the doctor used. i can't use any of the products you can purchase OTC. The same as the product used by the doctors. I have to bring my own natural lube with me every visit. It's expensive but everything else sets me off.
Thanks I will
He didn't use any lube, not that I noticed. He just felt around the outer bits and had a look. Took all of 3 minutes! It's been ok the last few days, just a twinge now and then today. Do any of you have that happen or do you have discomfort all the time?
Hi Sarah
When I had my biopsy taken from my labia minora a few years ago now the appointment was at the colposcopy clinic. It confused the heck out of me when the appointment arrived. So maybe that is the same for your July appointment.
I have also heard the same information around steroid use negating biopsy results so DO sort that out rather than go through that for nothing.
Good luck! x
I am a new member here but I have had ls for over 20 yrs. At first I did not have the usual white patches just tearing and inflammation. I had been in remission for some time but as menopause draws near I am starting to have flare-ups again. I read about a new treatment in the us called the o shot that underwent clinical trials for ls. Anyone else heard of it?
I've not heard of that but would love to know any info if you get any xx
I've just googled it and it looks interesting, and if I've read correctly the person who overseas the LS site has had it done in the uk with a 80/90 per cent improvement. I think I will go back on the LS webpage and see if anything is on there
Ooh that's probably it! Thanks! Did it hurt having the biopsy done and how long after till it stopped hurting?
The biopsy itself didn't hurt because of local anasthetic. Having the anasthetic itself was the worst part. I had a stitch in the site after, those that dissolve on their own. The 1st night after the anasthetic wore off was a bit uncomfortable but it healed quite quickly I thought over about 2 weeks and I managed fine. If I remember it was a several week wait for the result.