Surgery options?

Been there 8 months ago.....Order Hydromol ointment in the tub, and YES VM (vaginal moisturizer) 2 pack from Amazon. ..Your Gyn, or GP, need to prescribe Clobetasol ointment. Get a shower wand you can use at various setting to cleanse your vulva, clitoris, etc., plus a cleansing bottle ( like the ones hospitals give patients)I got a few from a medical supply house. Also get some high grade coconut oil...grocery store, baking section...get the best you can buy! EVERY TIME you uinate, use the cleasing bottle filled with water to get rid of urine residue. blot dry....dont wipe! Figure out, trial and area what works....it will take some time.....better part of a month for me.....the clobetasol ointment morning and night for at least 3 to 6 months....in the morning...wait an hour before applying what ever moisturizer works best, and reapply the moisturizer Each time you urinate....do all that, read other posts, and we WILL help you get through this stage, and be able to Cope...and Enjoy Life! Hugs!

Do what Jane says.

Hi Marilyn! Welcome. So sorry you have this awful agonizing issue. We understand and you’re not alone!!

What Jane said is great advice! Also you can add a couple pinches of baking soda to the rinse, I use that every single trip to the bathroom. 

I also take ibuprofen when it’s too much to bear for pain. Takes the edge off. 

I’ve been using clobetasol from dr. But also SO important to use coconut oil or olive oil and or aloe gel. 

There is a post here about aloe gel and turmeric essential oil that I’m about to try - it’s helped a gal on here miraculously!! (I’m waiting on mine to get here via online order). 

Some things that have helped others that you can search the group for -

Emu oil 

EmuAid (both are anti-inflammation)

Nappy (baby) cream like diaper rash

Taking supplements- Vit D3, magnesium...

Massaging the area (when tolerable) when you use moisturizer and prescribed cream

Glad you’re here. There is a wealth of info and support!!

I’m in the throes too, you’re not alone!

Hope it eases up for you soon. ❤️

H Marilyn- I was diagnosed 33 days ago -my inner labia were covered in ulcers, my clit was twice its size and too painful to wear pants, peeing was like flaming gasoline. I was in terrible pain and crying everytime I gad to use the bathroom. The good news is within 8 days the itch stopped, 10 days pain was gone abd arou d 14 days all ulcers were completely healed. I used Emuaid and Emuaid Maxx (ordered on Amazon),  used a moisture barrier with Vit A, D, E after each pee, cut back on sugar, wheat, alcohol and ate low oxalate diet.  Incorporated more vitamin supplements to try and balance my body ( thx Nancy KB) and took baths with baking soda when i needed to calm things down below. 

There is no “ surgical cure”, this is a disease we will hv for the rest of our lives, but it can be controlled. The surgeries mentioned online are primarily to help release labial fusing with the use of steroid Clob, and to reshape vaginal  and anal openings that have been impeded by build- up of scar tissue. You can’t “ cut LS away”, it is deep in our dermis and is our own T- cells attacking our own body. 

Some foreign articles are talking about use of direct untraviolet light, injections of plasma- rich platelets into vag tissue and the use of adipose fat injections as alternative treatments, but again no “ cure. “

We are here for you, there is a ton of useful info on this sight to help you and don’t despair! ??

Thank you all so much. I am so glad I found this site

Surgery! Ouch.  So far what I’ve known there is no cure.  I’m so sorry for you pain I feel for you as well. I was prescribe hydrocortisone 2.5 in vanicream mixed by a specialty doc and apply with a Qtip Inside when I have flare ups. I also keep clean always by rinsing with water when I urinite.  I aso apply pure coconut oil to keep moisturize.  I also have seen a homeopath and get heat therapy “moxibution”  i see great results as well when I get bad flare ups.  ❤️

I feel for you. If I needed surgery ask so many questions. They don't know enough about to start cutting you up. Try Aveeno bath made of oatmeal you need to get it calm down. Warm water ,no wiping . wash cloths . Try the virgin olive oil. Going to be hard but get stress level down. May need something for that. Your skin is very agitated. Will pray for you.

Hi Marilyn all the above is brilliant advice . You need to get on the steroid cream ASAP to start helping reduce the symptoms . It does get easier and less scarey I promise . Loads and loads of good advice on here from great people . Have faith xxxxxx❤️❤️❤️❤️

Your at the right place.... you just got yourself the best sisterhood you can ever get. Jane covered what you need to do so. Hugs and support xx

a few more tips! Wear only cotton underwear, and change it 2 or 3 times a day. Some people choose to wear light day pads, when using oil based moisturizers......I could not....they caused further irritation. If you do use the panty liners, DO NOT USE the Always brand....it leaves a residue that irritates. Kotex U does not.

You can google Lichen Sclerosus Specialists in your area. I live on the east coast near Annapolis, and found a Gyn that specializes, and a Dermatologist that specializes, and they talk to one another, and have come up with a plan for me that works! Hopefully you can also find a Specialist..

Be careful with surgery....LS can Not be eradicated.....there is a reputable group in Washington DC to consult if necessary...a Dr. Goldstein, I think!

Things Will get better....BELIEVE!

Hi Marilyn,  I'm 72 and I know how you feel and there is some great advice here.  I am trying practically everything mentioned and it really does work.  It's about finding what works best for you.  We all react differently.  Diet also plays a part in this so we hve to be mindful of working from the inside out as well too.

Until you get the Clobestol or other steriod ointment from your doctor, someone just told me to use Witch Hazel for the itching.  So I bought that tonight.  

You may gather from the posts here, we know more than the doctors about treatment.  It's a great support group here and we will get you through this.

Take care.