Anyone with Lichen Sclerosus out there?

I had Vulval Cancer in April 13, but was diagnosed with Lichen sclerosis in Nov 14 as I understand the two together are rare. I don't think enough is known which leaves us somewhat in the dark. I was already hyper alert due to the cancer so had a prompt biopsy, I think you have to be very vigilant and not to be fobbed off.

I have had Lichen Sclerosis for many years now and have Vulvar Cancer twice along with VINII and VINIII more times than I care to count. I am recovering now from my 8th vulvar surgery as we speak. Stay diligent in follow ups. The longest I have ever gone in between apts is 3 months.

Lisa

That's good to know,I'm just in the midst of a flare up,can I ask if you had a biopsy everytime you had new patches of lichen sclerosis? I have been to my Dr 5 times this month for painful swollen groin, and have new patch of LS on the left side, am having CT scan on Mon for groin but don't think doctor has addressed the LS. Thanks for reading x

Jublue, pretty much yes. Since 2008 I have probably had 150-160 vulvar biopsies. Each time I switched Dr.s from retirement or them referring me to oncologists each doc would say, "we are not going to continue with all these biopsies, this is more than anyone should go through." but as soon as they see how quickly my skin tissue changes, I am right back to 4-7 biopsies each time. 

Clobetasol gel always helped my lichen sclerosis, but if used too long it makes your skin so thin and tears really easily. Now, it also works against my body and changes things to VIN11 and VIN111 quickly.

I just underwent my 8th vulvar surgery last Friday for VINIII. They removed part of clitorus, all skin up to urethra and the left side and did two more biopsies. Dr called today with path results saying no cancer but yes Lichen Sclerosis. I get so upset thinking that I went through another morbid, horrific mutilating surgery for nothing. BUT...she insists that the the Lichen has to come out or it will turn to cancer and mine seems to go in months not years. 

So I don't tell you this to make you scared because like I said, they don't know why my skin changes are so fast and drastic...I tell you to always be diligent. Look at your privates with a mirror often and know the skin changes. 

On a good note, I heal quickly. As much as I feel like a monster down there and I look horrific down there. I have a high tolerance of pain and after big surgeries like this I can normally go back to work in a week. I see on here not many people are able to do that. (not when it's cancer and lymph nodes are part of this). 

I wish you the best of luck. I hope you find some relief. 

lisa

Thank you so much, my lichen sclerosis seems to change quickly. Your right its such a cruel bloody cancer and the physical scars are just crap. I do appreciate you taking time out to reply. Wishing you a straight forward recovery xxxxx

hello im just sympathising really but ive had LS since 1978,i had stitches after my second baby and when they were healing they itched , from that moment on i dont think i ever stopped really until i went into my change at 51 years old, it calmed down alot ,i wasnt diagnosed for 10 years , so it was a round of doctors creams antibiotics hell really,i didnt know anyone  with  LS either no one in those days would talk about it.i spent alot of my time sitting in bowls of cool water just to wee so it didnt sting ,once i was refered to dermatology they were brilliant you realise so many people have this ,and your not on your own .mine did turn to cancer 3 years ago and i had it removed, not end of unfortunatley because it doesnt go away ,i continue to have biopsy if theres a flare up but it isnt always cancer ,seeing the right people who understand is a real help ,epiderm oilment has been a life saver for me  at times also i have  a tube of lidnacaine to numb me so i can wee when i have a flare up.if only someone had told me years ago  that i could be numbed ,anyway you are not on your own at all seeing the specialist is brilliant they will help alot to help you live day to day  sometimes normal life 

       GOOD LUCK LISABX

Thankyou I am going to talk to my Gynie Consultant next week and prepare for more biopsies. Always appreciate the replies

Hi there,

Hope you don't mind me popping in from the oesophageal cancer group.

In 2002 I was diagnosed with an autoimmune condition in my mouth called lichen planus.  I get white patches on my gums and sometimes they bleed and I get nasty ulcers too.

Over the course of time I developed lichen sclerosis around my vulva and rectum with the itching and soreness as the main ongoing features.  I also had problems with my swallow, sinuses, ears and the mucous membrane in my nostrils.

In September 2013 I was diagnosed with a 7cm cancerous tumour in my oesophagus.  I never realised that this autoimmune condition I have was affecting every but of my mucus membrane throughout my digestive ststem until I had my chemotherapy, and it made me quite ill.  I have been told that my cancer, which is a squamous cell type, was probably caused by my Lichen Planus affecting the tissue of my oesophagus.  This cancer is oftencaused by smoking and drinking alcohol, and I do neither of these.

I am aware that I am at risk of developing cancers of the mouth and vagina, and that there usno cure for the lichen planus or sclerosis.  When I had a knee replacement in 2012, I developed lichen planus right along the full length of the scar, and I know it becomes worse if I am stressed or have a trauma to tissue.  I also have deep ridges on my nails, and it makes my hair brttle and thin when at its worst.

Please be aware that this type of autoimmune disease can become systemic and affect many parts of your body.  I have asked so many health professionals in the past but they all just want to deal with their bit of the body that they specialise in.  No one wants to admit that it can all relate to this autoimmune disease.

hope you all have a good outcome

Chris xxxxx

Wow Chris, thanks for all that information. So sorry for everything you have gone through. I wasn't aware of all that connection. I am the one who has also been posting on this discussion about Lichen Sclerosis and vulvar cancer. I too have the very hard ridges on my finger and thumb nails. I may have to do more research. I travel three states 9 hour drive to Mayo Clinic in Rochester MN for my appointments and care.

Thanks,

Lisa

Our stories are similar.....I have lichen planus in my mouth too.  Been there for 8 years and slowly taking over the whole length of my tongue along with the inside cheeks by my wisdom teeth.  I use clobetasol ointment on a gauze for 5 minutes twice a day when they really act up as the ulcers are horrible and deep.  I am going for a biopsy soon of this BECAUSE  I had lichen planus/sclerosis in my labias too.  It seem to wax and wane, get ulcers, heal over and hurt when I pee or had sex.  Well Jan 6 I was diagnosed with vulvar cancer...........I am having from my right above my clitoris to right above my urethra, including labias, removed on Feb 5.  Doc wants to take all my lymph nodes from both groin areas but I am hoping that we can do sentinel node testing to spare me that.

I didn't know that the lichen planus can attack all down the espophagus but I also cough when I eat....I wonder if that is the cause.....brother, more to worry about! 

I figured I had this autoimmune disease because of my Hep C as it shows up as a side effect of that virus.  So you have Hep C too??

Thanks for posting,   Patty