Re: (no subject)Dear Judi

[Guest guest]

Dear Judi,

I am 57, was diagnosed with LS a couple of years ago. However, I think I had it longer than that. I just toughed it out. I use Clobetasol Ointment 3x weekly. My gynecologist did not do a biopsy as he said it didn't look bad. (I stopped going to one gynecologist--she didn't even tell me what I had until the 3rd visit. And she seemed to just shrug it off. I was in horrid pain.) Therefore, I called a family friend--my current gynecologist. I now go to him. I know he attends conferences, and he will tell me of any new treatments.

I have not had itching. At times, I do have burning and a lot of stinging, especially after urinating. My doctor told me to pour water on myself while urinating as it dilutes it. He told me NOT to use Desinex. While it might help for a while, in the long run it would make it worse. Hot weather makes me miserable even when inside with air conditioning. You want to stay as dry as possible. Quite often when I'm in the house, I just wear my gown with no undergarments.

From my readings on the internet, I have learned to use all cotton underwear. I get all cotton knit slacks from Lands End. Do not wear any tight clothing, such as underwear, jeans, pantyhose, etc. Even nylon panties with a cotton crotch I can't wear as it makes it worse.

Do not do bubble baths. Use no detergents with purfumes or scents. In one article I read it was mentioned to use All Detergent--and I was already doing that. I've read to use Aveeno soap. However, for the most part I just spray myself in that area. I've read about aqueaous cream to wash with, but I haven't found it yet. When drying, do not rub. Either pat or as I do, use the cool setting on a hair dryer. (Once I used the hot setting before thinking, and I paid for that!) Avoid all chemicals or anything that might irritate. I've also read not to do things that cause a lot of friction--this might be riding a bike. I can walk some but I don't walk more than 25-30 minutes at a time. I've started to do some very, very mild yoga stretches. I also am trying to do deep breathing for relaxation. I have been under tremendous stress my entire life, but I'm learning to deal with that in a better way. I think stress makes any condition worse.

Recently, I've read about using Emu Oil. I bought some today at a health food store. I also am trying some supplements to help my overall immune system. The woman at the health food store told me to give it 2 months to see improvement. Here is what was recommended to me: a vegetable based vitamin, Saventaro--to modulate my immune system. I also have rosacea, fibromyalgia and hypothyroidism. I think all of these are autoimmune diseases. It was also recommended that I take high doses of fish oil. I did purchase these items, and I'm going to give it a try. I definitely am continuing to take the medications my doctors have prescribed for various problems I have.

I truly believe I have set myself up for these autoimmune diseases as I have taken care of everybody but myself. I am making life changes. There are times the LS is bad. I have even had to take an anti-anxiety drug to help deal with it. My doctor knows about this. However, often the LSt does not bother me. I might add that I pray a lot.

The people in this group are just wonderful. I hope I have helped you. I'm not an MD but am just passing on things that have been told to me or that I have read about. If you care to correspond, send me an email to: hinesjbell@...

I know it is scary. However, it does get better! I think the ointment your doctor has you on will help a lot. Iris