Lichen Sclerosus: Any other women dealing with this disease?

Posted by Kitten92 @kitten92, May 22, 2017

Is anyone out there dealing with this disease? I am currently using a compound ointment that my oncologist prescribed but I'm looking for possible lazer treatments or anything else that might now be available.

Interested in more discussions like this? Go to the Women's Health Support Group.

lindatucson | @lindatucson | Aug 27 11:13am

In reply to @0karen7 "I recently got diaginosised with Lichen Sclerosus by my gyn after a couple years of many..." + (show)

@0karen7

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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I am also on HRT for my lichen scleorosus and need it.

Becky, Volunteer Mentor | @becsbuddy | Aug 27 9:54pm

In reply to @nikkyd "Brand new diagnosis here. I actually got diagnosed with a bad infection of BV, started antibiotic..." + (show)

@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!

jw9 | @jw9 | Aug 28 11:43am

In reply to @sis22 "I surely do hope that I don't have any other autoimmune issues crop up. Hashimoto thyroiditis,..." + (show)

I really admire you posting for the first time, so clear and honest. I'm glad you have a definitive diagnosis. I had Stage II salivary cancer with surgery and radiation. At the time I had my only pap that came back requiring a recheck. While I had my surgery at a major medical center, a resident told me that cancer had nothing to do with the immune system!! This was 30 years ago, but I was an RN and knew he wasn't right.

Our immune and autoimmune responses are tied together. In the past 30 years I have acquired 5 autoimmune diagnoses. The most recent was in June when I started treatment for LS. Yes it is considered autoimmune. That's why it can be treated but you can have flares and do have it for life.

I have found that it takes me a short time to learn to cope with new illness. But the emotional toll takes me longer. LS is not anything I can talk about with others (private), so I feel that joining supportive groups like this is helping. I have rheumatoid arthritis, Hashimoto's (30 years), Sjogren's Syndrome(30 yrs) , Undifferentiated Connective Tissue Disease, on the spectrum of Ehlers Danlos (both 30 years) Now LS.

And I have a rich inner life, long stable marriage. I'm a poet and make jewelry. These are the ways that I find joy (following baseball too!).

I hope that you are finding ways to enjoy life even with autoimmune illness. I also honor the path you've had as a cancer survivor!

Julie | @mrsfootdoc | Aug 28 6:30pm

In reply to @nikkyd "Brand new diagnosis here. I actually got diagnosed with a bad infection of BV, started antibiotic..." + (show)

Hi, 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

sbosak1967 | @sbosak1967 | Sep 30 5:09pm

I am looking for specific brand name products to use in addition to the steriod cream? Lubricants, soaps and other helpful products.

bethdoraine | @bethdoraine | Oct 1 10:49am

I use Pure Purple Emu Oil and also extra virgin coconut oil and get instant relief with both.

Good luck

dld2022 | @dld2022 | Oct 2 6:34am

When I was first diagnosed (about 4 -5 years ago) I was prescribed steroid ointment (Triamcinolone). I’ve used it about 2x a week now when I feel the need for itch relief. That along with Dove soap for sensitive skin has keep LS in check.

I do have concerns about using a steroid ointment this long.

Does anyone have alternative remedies that have helped? thanks in advance

abi66 | @abi66 | Oct 2 4:31pm

Not sure where you are but I am in the UK. Here we have an over the counter antiseptic ointment called Germoline. I find it excellent and it has no side effects (for me at least).

dld2022 | @dld2022 | Oct 3 6:15am

In reply to @abi66 "Not sure where you are but I am in the UK. Here we have an over..." + (show)

@abi66 I’m in the US, but, I do see it is available here on Amazon. I think I’ll try it- thanks

sspil5 | @sspil5 | Oct 3 9:27am

Great news , I’ll also order it
Ty so much

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