Anyone with Lichen Sclerosus out there?

I started with lichen but after few months it was vin3   i had surgery to remove it but was left with hydrentiteus skin condition and just had 3 ops to remove the last wzs removal of all groin then skin grafted.but its broke down and be a total waste of 6 hours in theatre dont let them fob you off push them to get.rid. they.want to do other groun as moved there but said no way ill.keep the itch take care.get it sorted xxx

They think I there may be a link  between Lichen sclerosus and Hashimoto's Thyroiditis xx

Yes I still have it. Had 5 biopsies last Tue & I'm still sore & raw around the vulva, especially where the stitches are. The gynaecologist asked me how I was doing & I said I was still itchy & sorez so she said she would need to do a biopsy. Then when she was examining me, she said she need to to do 4 more, which was 5 in total. I have to say, she was great but I wasnt so great. She sent the biopsies off to be looked at urgently, and no word of results yet. I had a different consultant in 2018 & she was absolutely useless. She spilled half of the anaesthetic she was giving me to freeze me & I could feel the stitches going in!! Do the lady i have had the last 3 or 4 times is fantastic. Hope all is well with you all xxx

So I'm sitting on a pillow at home, and take it out to the car to sit on when driving. Use lukewarm water when I go to the toilet etc.

Hi I have lichens sclerosis for 3 years now and was just diagnosed with VIN 3. 

Hi, I'm new on here and mostly reading through postings and gaining a lot of comfort that I'm not alone. I have been diagnosed with vuval lichen sclerosus for 10 months now, although it is thought it may be a combination of LS and lichen planus. I also have oral lichen planus diagnosed 10 years ago. It has been a difficult humiliating journey for me. with the vuval pain and itching. I was referred to a gynae consultant and it seems to be controlled with Dermovate with moisturing soap substitute. I also have a lump near my groin which seems to come and go, but does worries me that it may change to cancer. I'm 61 and have probably had LS since early 20s as white patches been present since then, but always told it was vitiligo.

Just wondering if any one else has itchy lumps in groin area. I've been discharged back to GP but worried about applying demovate to this area. Im ashamed to say I'm not confident my GP really understands this condition, I do feel isolated with it and reluctant to go to my gp for help. I'm getting on with it the best I can. These postings are a lighted-candle for me too, especially during this flare up. It is so helpful to get a little reassurance and to here how others are coping. 

Hi Zuki~ I know the good feeling of finding a group of understanding others.

One thing I must share, after reading your post, is something that took me  along time to learn-- and the hard way-- was to change doctors as soon as possible when one is not being SUPER helpful (as that is how they should be)-- I have had more harm than help from doctors. I seriously could write a very disturbing book about it. I was never one to change doctors, because I was too respectful-- it turns out, I was caring too much about THEM. Anyway, I recently got a new primary doctor, and this is where I learned what difference it can make. I still have to go to other doctors that I am not as confident in, but hopefully they will not be ones that I depend on for serious decisions or care. (tests and referrals is the limit!)  Re LS, I have seen Primary, GYN, and dermatologist, and a dermotologyst/gyno, and oncology/gyno//// and none have been good. The new primary understands this and is supporting a referal I received from one of the others for a VULVA/DERM/ GYN specialist...Her name is Dr Paula Zook n Seattle WA-- I don't know where you live, but I tell you this just as a suggestion that you search for a doctor who the type of specialist she is (google her so you can see her specialty and see if you can find anyone like that near you)...she is the only one I can find in the state of WA-- I have not met her yet...because of COVID19 etc., but I will. 

As far as your 'lumps'-- that doesn't describe them well enough to reply-- are they on the skin? under the tissue-- then, given either, what are the other presentations? I have some lumps under the tissue. No one has ever commented on it. It may be something Dr Zook will have something to say about. I just feel like there is usually a limited amount of time with doctors (they make us feel that way too)--and I try to prioritize my ailments (what I think are priorities anyway) -- I have some odd ones. With LS, I am SO MUCH BETTER if I do NOT use clobetasol ointment. That is the stuff that made me lose so much structure and lead to allergic reactions (this is just my experience, but I understand most doctors recommend it and claim it is the key to preventing LS from turning into cancer---  I am not at all convinced). Ok! there is a little reflection. As my old primary doctor said (who was sweet, I liked her) "It really sucks" -- keep smiling and believe that we can heal. At least, do what we can to not let it get worse :-) 

I am so sorry to hear that. How did the diagnosis come about? Did you notice something very different and get a biopsy?  I hope you are doing ok. Find what makes you feel good and do it :-) 

Hi Peacenow, I can't express enough how helpful your reply has been. I just need to find a compassionate specialist that can help me feel better about this condition. At the moment I feel it carries a stigma. I just hope the dermovate keep things under control so I can stay away from primary providers.

I've found a LS support group I can visit when the covid-19 situation settles. Meeting and chatting about my cancer fears with woman that have had similar experiences can only be positive. Thanks again. 

I recently was diagnosed with lichen sclerosus.  I had to tell several doctors that I had LS.  They were all misdiagnosing me.  They all seem indifferent about my disease.  Finally, one doctor did a biopsy procedure which confirmed LS.  All prescribed clobetasol.  I feel so lost.