Anyone with Lichen Sclerosus out there?

I started with lichen it drove me mad and still does I also had vin3 I had a 2 hour op they wanted me aldera but a friend had same and she told me how much it burnt her so refused it. After I was referred to dermatologist who for 4 months tried every cream on the market . I'm back at gynaecolgist now he's took more biopsies thinks the vin is back if so he can't do it anymore so will have to see a professor to do a partial vulvectomy get results Friday dreading it really thought it was all behind. My dermatologist said lichen is incurable just treatment to relieve symptoms it will keep flaring so hope this helps has anyone else been lichen is incurable xx

GB0712 I was diagnosed with Lichen Sclerosis in 1999 after a biopsy at the time I could hardly walk without being in pain 

I was given cream &over the years have had flare ups but the cream was used a fair bit of the time 

It got bad 2016 & was given stronger cream then I found in 2017 even that wasn't helping & I thought that I had a lump on the left side of the vulva 

December 2017 had a biopsy which did prove positive for cancer, in January I  had a radical left vulvectomy with sentinel nodes removed  that has also proved to be positive so I will be having the lymph nodes removed on 21st 

While yes I have cancer it took since 1999 to happen there is a positive from that in that just have lichen sclerosis doesn't mean that you have or will get cancer 

Best Wishes xx 

Hi All,

I’ve had LS since a child, I’m 44 now and was only diagnosed 2 years ago, same time as Vulva Cancer.

It takes many years for LS to turn to cancer if at all. It is rare and treatable if caught early.  As you know and are seeing someone for it you in a much better position.

My Vulva was white/silvery for many years, itching on and off for 30 plus years. I’ve lost my cliterous and other areas shrunk.  I had a tear at the 6 o’clock position for a couple years (maybe longer) before it turned into a ulcer/sore which just got bigger.

Keep an eye on anything that lasts a month or changes and go back to a dermatologist if possible.

I was given the steroid 2 years ago which turned my skin back to pink and I haven’t had any itching since. I still use the steroid once a week. And see a dermatologist often.

As for the cancer, it was stage 3 and a long 2 years but I’ve had the all clear now. 

Hope this helps 

Clare 

Hey~~~ thank you for hte reply--- 

my gyn said the same hting about 'never seen worse'-- but really ? 

I really think I've had it for a long time and it it took me to say say to them "LOOK... what is this?"

anyway-- I went to a new gyno last month and have an appt next week.( a good experience,,,and she wants to refer me to another specialist at UW Seattle-- but it takes months to get in she said)

she instantly suspected that I had an infection and didn't even do a full pelvic exam(thank goodness...I was is no much pain at the time)-- i believe I have had an on-going infection for well over a year (2?) and it would go up and down... what happened, was that it got really bad and I was in misery-- and I was confused because of the LS and how quickly it evolves... I also thought i had an allergic reaction to the clobitosol (I still think I react to it in a wicked bad way ) but I think it was compounded by my ongoing infection--- anyway--so, I was treated with Clindimycen antibiotic and had so much relief it was amazing...I actually could sleep better ... the Lab showed 4 abnormal growths, including staph and strep -- but, I have been off the antibiotic for about 2 weeks now and i'm progressevly getting worse... i thingk the infection is back...and the LS is looking bad...evolving what seems like over night... the pain is worse and worse every day... My thought is htat my Ph is probably off and that is setting things up for the bacteria to get out of wack... My hope and plan is to have them check my Ph when i go next week (can I, should I, do I have to, wait another week??!) -- ANother thought is that I think the LS was either started after an infection or was made worse by it. 1. check Ph 2. treat infections 3 . get tested for infectinos/// 4. how to regulate Ph-- learn and try

re allergic reaction to the steriod ointment--  the gyn ordered an alternative.. it was testosterone based rather. with petrolium.. and they can concoct a mix with cooconut oil, i understand... I did not get the new prescription... I need to get this infection under control first .  I am particularly bummed and worried about my new wonderful relationship... I met him 3 months ago-- I believe he is the man I have wished for my whole 53 years... we have not had sex yet because his divorce is not 100% final/// (nice guy right!)  anyway, I told him I have soemthing going on that is evolving and not contageous and not cancer, but it makes me very sensitive (he responded that when the day comes that we can be that close, he will be very gentile and will never do anything to hurt me... wellllll that is just my little thing-- but,,,it is a big thing, because I have had such a terrible sex life in many ways and finally found soemone with whom to enjoy it... If he loves me anyway, then I will calm down and be ok.... I'll be ok anyway!! I am ok!! I have 3 grown and wonderful childern and a lot of love in my life.

there-- I wanted to just say Heads up to everyone to get tested for infections (sometimes there are no obvious symptoms)-- I think htey contribute to the progression of LS--  I'll let you know what comes of my Ph theory.

no doubt about it, this sucks. It helps to read other peoples experiences. We should all meet at the beach and have matching towels.

Hi Ternet, what you said is it in a nutshell.  At the moment I would quite happily (maybe mistakenly) have a colostomy bag because it is so painful when I have a bowel movement.  It's even painful when I pass wind.  I haven't had penetrating intercourse for X amount of years and wouldn't even attempt that just now because of the pain.

 Although I was only diagnosed with VIN, firstly in Jan 2017 and secondly a few weeks ago, and also diagnosed with lichen sclerosis a few weeks ago, I am convinced it all started a few years ago the vulvar skin had lost it's elasticity and my VP was unable to carry out a smear test.  Despite this she just kept giving me creams for thrush and sent a sample away to see if I had infection, which came back negative.  I was horrendously itchy and this continued for years, getting worse and worse.  I was only diagnosed with VIN by chance when I had a cycstoscopy and after scanning me they found a lump on one of my ovaries, which resulted in them referring me to gynae.  I'm not sure if I had LS then but as I said, it was only diagnosed a few weeks ago when I was told the VIN had returned.

I am in a lot of pain and itching, and also finding it painful to walk and the further I walk the more painful it gets, which puts a lot of restriction on life in general.  Am going for a consultation with the dermatologist tomorrow, I think to discuss what treatment my treatment options are so may actually get some sort of life back if surgery is an option.  They have offered me Aldara cream but using this seems to be extremely painful and it is a course of ten weeks, whereas the surgery would be instant.  I know I may be sounding a bit blase about having surgery but it's not a huge thing for me as I have had more than 20 surgeries so am a bit of a veteran. 

Hey, good luck with your appointment tomorrow,  if it is still tomorrow.  Let's keep updating each other... seems we are in the same boat. My appointment is next week...Monday,  but I'm trying to get in sooner. 

Hi PeaseNow...thank you.  My apologies to you and everyone else that commented on my post.  I've not been feeling social and keeping to myself.  I woke up Sunday morning with pain in my lower back, left side and it's gotten worse, painful to sit and to walk.  Couldn't go to work today and baffled as to what this could be.  My LS is flaring up again...so itchy!! 

I will update after my appointment tomorrow and best of luck to you.

Hi my now 9yr old granddaughter was diognosed at 3anhalf vaginal lichen sclerosus.

Presently laying in bed crying with cold fannel to compress

Has 6monthly check ups is the youngest 1 of 4 children in eastsussex with this condition.

Any local help groups x

http://lichensclerosus.org/

I have recently been diagnosed with lichen sclerosis last month, January 20, 2020. I’ve been doing all the creams, ointments, steroids, etc.