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where enough people were enrolled and followed over time) The "O-shot" is a procedure where the patient's own blood is withdrawn, spun in a centrifuge to separate out the platelets from the red cells and then injected back into the vaginal tissues (yes, I know sounds awful but they give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
ro77360 Guest
Posted
i found a 2019 site, Skin Support, by the British Association of Dermatologists that had this quote:
"Friction or damage to the skin triggers lichen sclerosus and make it worse. This reaction is called a ‘Koebner response’. Irritation from urine leakage or wearing incontinence pads or panty liners can make the problem worse."
Also, it says we should protect genital tissue from our urine by using an emulument.
I wonder if having acidic urine is a factor too.
ro77360
Posted
I don't use panty liners but this fall and long winter I wore tight running pants for hours every day as I'm a daily runner.
This is the first time I've ever worn them at age 75.
Just a thought...
Guest ro77360
Posted
Hi Ro,
Good point. Do you have a citation for this Brit Jrnl of Dermatology? I can try to look i t up in all the journals I have access to.
Will post when I find. Thanks!Biscuit
ro77360 Guest
Posted
I just googled LS and triggers (I think those were my search terms last night...) and it brought up a site called "Skin Support" run by the British Association of Dermatologists.
I looked up Lichen Sclerosus.
If you can't find it I can copy and paste it for you in a private message.
Its very readable - great site. Short article and to the point.
Guest ro77360
Posted
Dear Ro,
I have read acidic urine can irritate skin but not whiten the tissues. There are tons of barrier types, too numerous to list here. Have you tried Vitamin A & D cream? Have you had any auto-immune tests done? My GP today order 3 auto immune blood tests. Should hear next week. Intuition tells me I have done this to myself by overwork and over stress.... Do those characteristics apply to you as well? Some of the others on this site have said they had bad times immediately preceding the appearance of LS......
susan43705 ro77360
Posted
I read that article. Informative but nothing new. It's a good site though.
sarb73328 Guest
Posted
Thanks for this info Eggbiscuit. Sounds like you have a well informed gynae. Not easy to find.
If we could only 'tell' our immune systems what to fight and what not to fight, we might get somewhere. Meanwhile we have to muddle on as we all are on here I guess - finding our own ways to cope.
Does anyone know what the longest time is that you can expect to be in remission?
patricia87844 sarb73328
Posted
Lucky you to be in remission, Glad to see it IS possible. I have had some lessing of pain but it never settles down to remission. So like all of us I will continue coping hopefully I will someday join you in remission.
ro77360 Guest
Posted
Believe me, its a daily battle but at least I haven't cried lately.
Are your the Patricia who lives in Chicago?
Ro
patricia87844 ro77360
Posted
No, I am Canadian, live near Toronto.
Guest
Posted
A clarification--the doc said the white areas (LS) was likely in remission but the pain is not. I cannot sit down without pain. I took a trip today 65 mi away to the regular doc and it just about killed me. He order auto immune blood tests, specifically: anti-thyroid antibodies, anti-nuclear antibodies, and the sedimentation rate. Should get them back next week. Doc and I expect them to be high since my mother had high ANA/Sed rate. That's how you diagnose lupus, scleroderma, etc...
Meanwhile, I am not sure this gyn is correct but she has order compounded drug$$$ and I will run with it for awhile and see. I continue to investigate these mysteries and I pray for us all.
Nancy_K_B Guest
Posted
Many thanks for taking the time to write up your discoveries from your doc today, Professor Egg Biscuit.
I"m a retired Landscape Architect, age 73, the nerdy research type, who went at this autoimmune bit with a vengeance one and half years ago. Anyway, I don't want you to have to reinvent the wheel, here are the links that I posted back then after a whirlwind around the clock bit for some days and weeks and updates for many months. All update discoveries of yours appreciated.
https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033
I also developed a whole nutritional support protocol that I've been faithful to as much as I can. This one needs updating which I'll try to get to in a couple weeks ( sorry, really busy with not being retired - grin). my goal is to put it up on one of my own website pages so that it is available for everyone without hassle and more readability than what happens here.
https://patient.info/forums/discuss/nutritional-support-protocol-for-autoimmune-diseases-636963
Guest Nancy_K_B
Posted
Hi NancyRetiredLandscapeArchitect!
Yes, thank you. Listen--nerdy research has changed the world. Before I became prof. Biscuit I did some architecture with various firms. Have 57 buildings under my belt. But, I digress. I looked at your list a few days ago and have been busy running here and there, trying to keep my job, hah hah.... Will get back to you on some of the initial questions. Today my GP ordered antithyroid antibodies, antinuclear antibodies, and a sed rate test. Should hear next week. Intuition tells me this is something I have done to my self.....
How are you feeling, as long as you follow your protocol? What happens if you have milk, cheese, a piece of cake?
biscuit
Nancy_K_B Guest
Posted
Holy COW ~ 57 buildings....HEY! I got my Masters at UGA in the early 80's (what they used to call a retread - ha! Worked for the Kings bay Engineering Command for several years then to Corps of engineers for a couple years ( a terrible mistake, no where near as dedicated problem solvers as the wonderful engineers I worked with) before moving up to the mountains of western North Carolina.
As far as protocol, other wonderful women around here were so helpful a couple years ago and mentioned that long term LS sufferers have discovered that once we get serious on elimination diets etc, then we can reintroduce carefully and in small infrequent "doses" some of our otherwise individual triggers.
For me, I now can enjoy a piece of cake at a party for instance. I really don't digest milk very well and haven't for years so that is no suffering. ha. On the other hand when some women have mentioned that they positively can't handle wheat, my intuition kicked and I knew that wouldn't be a problem for me. Of course I only use Ezekial bread from the health food section - i.e. organic SPROUTED bread.
but if I have spaghetti I haven't noticed any difference.
I use dowsing to discover that sugar is a no no, and oddly enough, neither is honey all that great for me, but my dowsing said okay to maple syrup - so that is what I have a bit of on my oatmeal.
YOu've gotta get you vitamin D reading - or do you know it already?
Nancy_K_B Guest
Posted
Many thanks for taking the time to write up your discoveries from your doc today, Professor Egg Biscuit.
I"m a retired Landscape Architect, age 73, the nerdy research type, who went at this autoimmune bit with a vengeance one and half years ago. Anyway, I don't want you to have to reinvent the wheel, here are the links that I posted back then after a whirlwind around the clock bit for some days and weeks and updates for many months. All update discoveries of yours appreciated.
https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033
I also developed a whole nutritional support protocol that I've been faithful to as much as I can. This one needs updating which I'll try to get to in a couple weeks ( sorry, really busy with not being retired - grin). my goal is to put it up on one of my own website pages so that it is available for everyone without hassle and more readability than what happens here.
https://patient.info/forums/discuss/nutritional-support-protocol-for-autoimmune-diseases-636963
Nancy_K_B
Posted
Oh, P.S. I only used what was freely available online. I gave myself the task of only quoting from websites from an M.D. or an N.D. ...or NIH of course. There might be one or two chiropractors stuck in there, but only if they themselves did fabulous due diligence on references.
It will be wonderful to learn anything you might come across from your access to medical journals. YOU might want to check my links first - I've got a few in there where I could only access the abstract for free. As you must know, Elsevier is terribly cruel on that regard!
susan43705 Nancy_K_B
Posted
Hey Nancy, Good to hear from you. I was thinking it would be a good idea to do our own research and survey if those on this forum would care to fill out a questionnaire and then maybe we can see if there is any correlation amongst us all. It would be good to do it anonymously if possible. WHat do you think? It is really getting so frustrating not finding any answers or long term relief. There has got to be that one thing that is affecting us all.
Hope you are doing well.
Nancy_K_B susan43705
Posted
Aw thank dear Susan 43705.. smiles.
Funny you should mention - I've also realized that there really needs to be a large scale research on this egregious disorder. It's also been on my mind Susan. I've put it in my basket of areas to support or to find funding for. The issue is way larger than this little patient dot info corner of the universe though.
Did you know that there are over 11,000 members of the yahoo egroup for instance?
Oh, it definitely needs a private website - or rather a website to hold a survey service hidden behind 'walls' which then implies a tech person to run...
Prof Biscuit is ten years younger than me and still associated with a university and she might have access to the statistics department who could even help us formulate good questions to do valid analysis. (I did that for my grad degree - they were wonderful).
but let's begin.... smiles. the dinarah will come when we....
susan43705 Nancy_K_B
Posted
Let's not think about our age (ugh) and just try to get started. I'm wondering if you, me and egg biscuit could have a conference call and get some movement or exchange emails outside of this forum which is restrictive. I'm also interested in where everyone is from, although I know there are a lot more than what is on this forum. I could do a Wix site or hire someone to do it so that it is private with a passcode to enter. I think it is time to help ourselves and that survey would be very helpful. I think if we can get that together funding could possibly happen.
Thanks Nancy!
Guest Nancy_K_B
Posted
I used to use Elsevier a lot but their subscription got so costly my university dropped it....I will look again at your list. I did see several links with external articles.
Later,
biscuit