Update from New Gyn on Lichen Sclerosus
Posted , 17 users are following.
Hello All-
Have just returned from appointment with new gynecologist who said some interesting things that some of you might find helpful.
1.. Lichen Sclerosus is on the rise (we are in US).
2. More men are getting it.
3. She is 99% certain it is auto-immune based.
4. Article provided by Beverly (here) argues that the auto-immune system is activated erroneously by lymphocytes (white blood cells of the immune system)
5. Disease has a predilection for genital skin. Oh Happy Day.
6. It CAN go into remission with early steroid treatment. Said mine was in remission likely because it got treated within 2 weeks.
7. Biopsies for it are only 50% accurate. A "positive" result does not mean you definitely have it but a "negative" result does not mean you do not have it either.
8. Doctors in the US are going ahead with a scrip for clobetasol even without biopsies because the steroid works well for awhile-until ti doesn't and then they may switch to tacrolimus (Protopic)
9. Doc was unsure whether "O-Shot" procedures would help. Said there were no good studies there are studies she just thought there were not enough where enough people were enrolled and followed over time) The "O-shot" is a procedure where the patient's own blood is withdrawn, spun in a centrifuge to separate out the platelets from the red cells and then injected back into the vaginal tissues (yes, I know sounds awful but they give lidocaine). The platelets help re-epithelialize the genital skin- at least that's the theory.
- So, bottom line is that those of us who have LS have a body that's done this to itself. If it just showed up as many of you say, then it can just Go Back To Where It Came From as well. The trick is how to get it to do that. With so many triggers in the auto immune system, my questions are : Are these triggers the same for all women? Can't be. Young girls get LS same as middle aged and those of us , er, getting older and post-menopausal. Hormonally based, doubtful with the various ages. Men get it on penises mainly but also on surrounding territory. Different hormones.
The Chinese say it is due to liver dampness and people who are "relentless" workaholics and driven to produce are most likely to get it.
So that's where I will direct my research- auto- immune triggers. Stay tuned and be well to you all.
Eggbiscuit
4 likes, 46 replies
Guest
Posted
Susan,
I've been thinking the same thing and what I have done in the past with professional research is to create a template and pass it back and forth for people to fill in along the way. Question is how to do that here. Maybe "insert image."
susan43705 Guest
Posted
Hi eggbiscuit. Let's ruminate on how we can do this. Maybe our guru here, Nancy KB has some ideas. It could be very productive. I think t his would be easier to accomplish if we had a private website and not a public forum. A website by invitation. There are a lot of kooks out there. A website with all the information we have all gathered including Nancy KB's extensive information.
Kat7201 Guest
Posted
Survey Monkey?
Kat7201 Guest
Posted
Hi Eggbiscuit.
Interesting read.
I think there could be many Autoimmune triggers.
A lot of things seem to come back to stress, I don't think our bodies deal with it well at all.
I had 2 nasty bouts of shingles and wonder if that was my trigger, or whether the shingles happened because I was out of sorts.
Be interesting to see what your research throws up. 🙂
Guest Kat7201
Posted
Am trying to research in between doing my job. These darn jobs sure do interfere with our personal lives, don't they? Shingles means you have a virus within you. Have you had a shingles shot? I take it, no, otherwise you wouldn't have had the shingles.
What are your symptoms? biscuit
Kat7201 Guest
Posted
My shingles is gone now, I had it twice. ..and yes I did have a shot before the second bout. 🙄
I just wondered if maybe it had given my immune system a thumping or whether it was coincidence.
I currently have 3 auto-immune related issues - Vitiligo, Hashimoto's and LS.
Only recently diagnosed for the last 2.
Reading these posts with interest. 🙂
Guest Kat7201
Posted
Kat, well, for some one like you who is already immuno-compromised, a vaccine will challenge your physiology much more than one who is not. Maybe your system could not keep up with one more thing. One reason I do not get vaccines anymore.
What did you take for the pain? How long did the second bout take to go away?
shioban63152 Guest
Posted
hi there. my trigger for me is clear. i had several VIN lesions caused by HPV over time. in most cases treated with co2 laser. however, last time i opted for the cream instead. during treatment a new white patch appeared. biopsy came back as LS. that cream is said to boost your immune system. considering LS appears to be immunity-related, for me it is clear. if i have an underlying genetic predisposition for LS i dont know, probably. possibly a mix of factors is needed, not a single one. i dont know. i just wanted to share my experience.