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I'm new to Lichen sclerosus recently got diagnosised May 28
I recently got diaginosised with Lichen Sclerosus by my gyn after
a couple years of many many ongoing UTIs sent to a urgolgoist,
who did test and found I have a very large bladder and have bladder retintion and I used two intermittent catheters per day to help
keep by bladder . I am a 14 yr breast cancer survivor yay !! this year they caught it early in my yearly mamogram, it was small, after a lympetomy, when removing one lymph node under my arm, the surgen said it looked good on the outside, but a week later when I saw him for follow up he said the lymph at the lab was disected and cancer was inside it, so I had a port put in for chemo and did well through those and followed by radiation treatments as well, I have had a few questionable mamograms over these past 14 years but all turned out to be no cancer return. Breast cancer is not in my family history. So here I am 14 yrs later facing this new disease I know no one with, and was glad to find a forum like this to connect with.
I went through almost all the treatment series with using clobetasol the every day 4 weeks, then every other day for 4 weeks but on the going into the every other day, I found I had very smelly urine and a UTI and took the antibotic for it, and as I was taking the antibiotic I went back to clobetasol every day, starting the process over but did 16 days every day, now am on the every other day. There is so much to this mentally and emotionally, I also have been in therapy for childhood and adult DID PTSD for abused neglect, mistreatment since in infant,and last split from emotional abuse was two year ago when I was 65, I have been with a christian therapist for 17 years so far now and with God's help we have met, healed and intigrated 181 split by trama DID parts of myself, I have been truely bless in so many ways, and I know God is going to walk with me through this LC, I say walk through cause I understand there is not cure. I hope there is connect to others with this, I have never been part of a forum before.
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@Okaren7
I'm glad you found this forum. I call it a "support group" even without talking to others and listening. I have found people are supportive and kind. There are moderators who actually check on medical advice. For me, I wouldn't take medical advice, but I have learned that others are there for me in other ways. Also, I'm 67 and have lived with chronic disabling (5 of them!) autoimmune illnesses. It has been a positive thing for me to share some of my experience and have people share that it has helped them.
I saw your post because I am also new diagnosed with lichen sclerosus. I started with clobetasol treatment in June. So I look to find out what others have to say.
Good for you starting a post! I haven't done that yet. I hope you get more replies. If women don't see it here, try under another topic that's started already. Take care. I wish you all the best and also how wise it is to find healing with therapy.
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2 Reactions@okaren7 I know what PTSD stands for, but what is DID? I am terrible with abbreviations!
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1 ReactionBrand new diagnosis here. I actually got diagnosed with a bad infection of BV, started antibiotic and it was terrible. I noticed discoloration and that even after 6 days of antibiotics I was still in pain and itchy. Saw my gyno and she said I had two things happening. LS and the Bv. Anyway. She wrote me off like go see derm and made me feel so lost. I guess when you hit 46 and aren’t having babies anymore those ob/gyno say good riddance. Anyway. I was prescribed clobetasol but didn’t want me to start it until this BV infection was gone. I guess adding a steroid to an area already angry isn’t smart, she has a point. I’m glad I found this place to connect with others. As of now I’m in the process of finding a new gyno and a derm that has experience with treating LS. I will admit it’s a lot, I’m exhausted a little depressed and frustrated. I’m not a stranger to autoimmune diseases, I have psoriasis but thankfully I’ve been symptom free for a while and it’s been under control since receiving laser treatments years ago! I guess Im a little depressed like why me? Why this? Why more? I’ll get over my pity party soon just it’s been a miserable uncomfortable week.
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4 ReactionsI am also on HRT for my lichen scleorosus and need it.
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1 Reaction@nikkyd Welcome to Mayo Clinic Connect! I’m so glad you found the site. There are several discussions on-going about LS but too many for me to list, you can access them by scrolling up this page. Click on the blue words ‘autoimmune diseases’ on the left-hand side of the page . This takes you a page titled Autoimmune Diseases Support Groups. There is an oval box that says ‘search.’ You can enter lichen sclerosis in the box, hit enter, and a whole list of discussions will come up. Choose whichever ones you’d like to read and click on it. You’ll find lots of good info.
PS. You’re.not the only one having a pity party! I think everyone has one at least once a day! Me, too!
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1 ReactionHi, I am 17 years out from stage 4 tonsil/tongue cancer. Had chemo and a lot of radiation. I have had Lichen plants for several years, but diagnosed 4 years ago. I have autoimmune disease lupus SLE. This disease affects the inside of my mouth the most. Horrible painful ulcers, burning pain. I also have it in my vaginal area. This condition got so bad I finally went OBGYN. She did some tests that came back positive for herpes. I know, I was shocked. Then was explained that almost everyone has this virus in our system. With autoimmune disease of any kind our bodies can not function allowing this to become active. I do take acyclovir and there is a specific kind that really helps when there is a flare up, also I take a low dose every day. This also helps my mouth ulcers. This type is not contagious, it comes from within you. Sits dormant until body unable to fight it off. To get relief go and get some vagisil, it takes pain away instantly. That along with acyclovir helps tremendously. I know the thought of having this is difficult but please get tested to know for sure.
A fellow friend.. Julie Hart