Has anyone tried castor oil?

susan, is this a particular cannabis cream? A friend gave me some for lower back pain. Do you know if this would it be the same as what you're using?

hi beverly, i have my cannabis card so it came from the pharmacy with thc in it.

So is it a concoction made specifically for LS? I'm not sure how medicinal cannabis works. I know they have all sorts of strains of MJ to smoke or eat depending on how you want your mood affected, but I don't know about its medicinal use other than this one cream my friend had for aches and pains. Restless leg also, I think..

susan. do you notice any difference? Is it healing your skin?

I don't see a significant difference yet because I go on and off of it depending on what's happening down under. If I'm having a flare up I resort to Clobestol. Now I have been using it for 3 days straight in the morning and at night before bed. The color is better on one side. I'll never get back what I have lost, which is the inner labia and I have significant white patches. I'm trying to save my uretha, etc. I'm really quite freaked out about how I look. I can't get over what LS is doing to me. It's like losing a limb.

susan, I'm sorry this is happening to you...and the rest of us. Everyone's experience seems to be very different. Certainly when it comes to treating it. Did you ask for your doctor thoughts on the cannabis cream?

I'm not due to see my gyn for 6 months. Was last told to use the 1% steroid just twice a week. I use estradiol cream for atrophy every night. Am having unpleasant sensations on the clitoral hood which started just before my last gyn visit. She said there were no signs of the LS there. If anything it was disappearing from the initial areas. But something is definitely not right. One of the nurses at Women's Clinic told me on the phone to apply the steroid, but I realized later the info did not come from the doctor. Am trying different moisturizers on the chance it is just dryness, but it doesn't work. It's a sensation that comes and goes. As the hormone cream seems to be otherwise taking care of the atrophy issue I can only imagine this sensation is caused by the LS, but I hate to start applying the steroid where I shouldn't.

It is like flying blind.

Hi Beverly. We are definitely flying blind with LS. My gyn only prescribes Clobestol. Doesn't believe it is autoimmune and has no other suggestions except the Clob and Estradoil. From what I have read even the vulva specialists don't have other suggestions except surgery if needed. It seems all the docs have different timetables on administering the steriod ointment.

I did not get advice on cannabis cream. Flying solo plus taking into consideration all that has been suggested here thanks to Nancy KB. I do worry about cancer.

Everyday when I look it is different. No two days are the same. I'm pretty much distraught at the changes but trying to keep busy. I am going to see my primary care doctor and see about some more blood tests to test my thyroid again and for lupus.

susan, I thought what put it in the autoimmune category is that the body is attacking itself. What is your gyn's theory?

Yes, they have different timetables and also prescribe different strengths of steroids. Mine is the weakest. Perhaps because it wasn't causing me the type of extreme discomfort as others report or maybe she just doesn't think strong steroids are a good idea. I don't know as I didn't learn different creams are different strengths till later. My GP happened to mention it.

Knew I had AV and a fleeting vag infection. The LS diagnosis came from out of the blue. Since then I have used both the hormone cream (which I had been avoiding ) and steroid since the end of May. The occasional signs of the infection have gone with the warm weather it seems. Or maybe because of the consistent application of hormones. But this new clitoral discomfort has me concerned.

I will try to get more info on the cannabis cream before I try that. The restore essential oil I tried burned terribly, so I am reluctant to try anything the gyn hasn't recommended. Her belief is only steroids can affect it. Everything else only soothes symptoms.

hi guppy, is your hair coming back? i do take biotin. i think i have something else going on in my body that im losing hair only on the left side. thinking about a wig soon.

Hi susan, yes my hair is absolutely fine now but it was coming out in fistfuls last year. The meds I take and the biotin have done the job. I would see someone rather than just accept it as you might have something that needs treatment. I had Lupus but I didn't know it which is why i was losing my hair.

Hi Guppy, How lovely that your hair is fine now. Did you use anything like Rogaine? I'm taking 10,000 mcg of biotin. Wondering if I can take more.

So you had Lupus, does that mean you don't have it anymore because the meds are helping? I am going to see my primary. Thank you.

Hi Susan, I just took Biotin, nothing else, but once I started to take Meds for Lupus I went into remission, but it is always there and there isnt a cure for it.

I think anytime when you have hair loss it is good to get a check up.