First I wanted to thank everyone on here for the tips and advice. I have learned more about LS here than at the countless doctor appointments I have had!
I noticed a few ladies with clitoris irritation or excessive sensitivity there sometimes. I had this too, but also had daily nonstop irritation in the labia minora area (or where the labia minora should be). The whole area for me down there was either red or white, no nice pale pink supple flexible tissue. I'd been doing the baking soda baths and the spritz after urination followed by coconut oil and using the club after the bath, taking care to rub it in. I also cut all sugar, gluten, dairy, and alcohol from my diet. I was initially quite strict with no sugar at all for a month, then had one serving of berries only daily for two months, and now have either some fruit or a very small amount of raw organic honey daily.
When I got my period, the irritation ramped up. I have since learned that is because of the pH of blood, even one drop of blood on that skin can send it into a frenzy because it was so irritated and raw.
I saw my GP a half-dozen times at least while waiting to get into a gyne. I have to say I am not impressed with my gyne, who I have seen for 2 visits (all of 5 minutes each visit) and all she had to say was that it wasn't a big deal and just use the clobetasol, and lots of it, and come back in a year. By this point the LS had spread to the anal area and I was having tearing, pain, and fresh blood with every elimination. In short, I was not well. I tried acupuncture and a Traditional Chinese Medicine doctor. He was very well recommended and actually is an MD as well, but he never examined the area and we couldn't really communicate fluently.
I continue to see my GP and gyne (when she'll see me), and I continue to use clobetasol daily (since June 2015). I am in no way suggesting that anyone abandon the clobetasol or steroid ointment. But I have to say, what has made a huge difference in my health is going to a naturopath.
She has recommended dietary restrictions and some vitamin supplements, but also introduced me to a product I haven't seen discussed here: ozonated olive oil. Of course, there are different brands and whatnot, and as with anything it seems there are some better than others (something to do with how the ozone is put into the oil and then how the product is stored). It should be refrigerated. It melts on your fingers like coconut oil.
It is apparently a powerful epithelial skin healer. I say apparently because I am no scientist. I read that on the Internet and heard it from my naturopath. It is a strong anti fungal, and I actually thought of using it on the vulva when I was getting the excessive clitoris sensitivity because of something I had read on this site about how fungal infections can live in the clitoral hood skin. Anyways, I gave it a try and I must say, it BURNED. I won't lie. Like when you are holding your hands too close to the flame and want to back up. But it dulls after ten minutes, and I put it on then went to bed, and I was able to sleep, it didn't wake me up in the night. No pain by the morning. It burned the next night too, but every day less and after four days it didn't burn at all.
I keep at it once daily and I have zero daily irritation now. It doesn't even feel like anything is wrong down there. I still have fusing of the labia minora, but I can start to see the outline of a raised edge underneath the skin. The white is more off white than stark white and the red is now pale pink. The skin is stretchable without pain. No bleeding on elimination. Of course, the diet and supplements and clob must all play a part. It's just a suggestion if anyone is interested - just look up ozonated Olive oil and make your own decision. I think it made a big impact on my sanity and emotional capability to handle LS, by relieving some pain.
Sorry for the long post!
