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where enough people were enrolled and followed over time) The "O-shot" is a procedure where the patient's own blood is withdrawn, spun in a centrifuge to separate out the platelets from the red cells and then injected back into the vaginal tissues (yes, I know sounds awful but they give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
Debbz1989 Guest
Posted
Thanks for the info! 😃 Hoping between all of our posts - we'll help each other and every one of our different situations.... since none of us are really suffering exactly the same. Everyone has different severities of the disease.
maryella Guest
Posted
Thanks for the info, will be looking for your research in the auto-immmune triggers! I know I usually have a flare up if I eat sugar and I've tried cutting out gluten and dairy also. Use mild soap for bathing and clobetasol afterwards. Use to soak in borax bath, which helped.
susan43705 Guest
Posted
Hi eggbiscuit, Thank you for this information. When I went to an acupunturist last year he told me my issue started in the liver and gave me some herbal pills but they didn't help nor did the acupuncture.
I was in remission for a couple of years and then BOOM out of nowhere for no apparent reason, I got hit with an outbreak. I'm in hell right now in way I haven't suffered so I am relying on the Clobestal to calm things down a bit. I'm wondering why the genital, although I heard that LS can appear anywhere on the body. There has to be some correlation amongst all of us. I wish there were more studies.
Anyway, I hope you are doing well. Take care.
hannah19230 Guest
Posted
this is all really interesting. how did you know it was LS within 2 weeks? did you already have white patches? im really curious what everyones symptoms were, how long until you were diagnosed, and how to believe your doctor if you show no physical signs?
I'm 32 and had itching for 2 years and LS was just brought up to me two months ago. The month this all started i had unprotected sex with a high risk person. I had a few rounds of the Bv then yeast then Bv then yeast. Stopped testing for them, but some symtoms stayed. I had tried steroid creams over these 2 years that never curbed the itching. i went to 3 gynos and my GP and LS just came up now with a specialist. i have no physical signs at all, she said she cant be sure, but that it must be what it is because everything else has been ruled off. If the biopsy wont be 100% is it even worth doing it? i asked to have one done at my next appointment to hopefully have piece of mind that its not LS.
im using Mometasone and it doesnt help the itch, so now my doctor is back tracking and going back to testing for yeast. ive seriously gone to at least three dozen apppintments over the last two years and am just so confused. I dont want to use steroid cream if i dont need it, but also dont want anything to progress.. especially because if it is LS, i have not been treating it correctly for 2 years now due to my doctors not giving me answers.
is it possible to just have ongoing yeast/Bv even if i dont test positive for it anymore?
thanks in advance
patricia87844 hannah19230
Posted
thanks eggbiscuit, I am going to see my GyN this week and I am going to print out your info and discuss it for her opinion. Will get back to you
This reply is to HANNAH I have been diagnosed with L S over a year ago. I do not have any white parts or itching. I have severe burning so much so I cannot sit with a rubber donut. I carry it everywhere, burning so intense have no social life, really am housebound. Very depressing!
Guest hannah19230
Posted
Hi Hannah,
In December I saw white spots in the genital skin and thought it was a bad sign and so looked it up. Mine looked pretty much like the images I found on line and two weeks later the gyno doc confirmed it. Said, "Lichen Sclerosus. I've seen it hundreds of times. Incurable. Take clobetasol." Get out of my office (basically).
I think it is possible to have on going yeast infections. Think about how many antibiotics no longer works because the bug mutate and become resistant to the drugs. Are not yeast /fungus organisms also capable of mutating to survive the onslaught of drugs we throw at them? I will have to look at the journals to see about resistance. One thing about being a college professor with a PhD is that I get free medical journal access that would otherwise costs thousands of dollars.
There's lots of reasons for itch, too. Are you in the US? Have you tried OTC remedies? Has your dr suggested hydroxyzine for the itch. That's generic for Atarax. You could try OTC anti-anxiety meds: something with Valerian, hops, passion flowers and melatonin in it. Less during the day, more at night. Best wishes. Will post what I learn asap. biscuit
Guest patricia87844
Posted
Patricia,
I so know what you're going through with the pain. I, too, have canceled several outings because of this pain and wonder whether I can keep my job? Can't take donut to work and sit on it.
Have you tried a borax water sitz bath? Or weak baking soda water? Coconut oil? How old are you and have you had your estradiols tested? Thyroid anti-bodies? What do you eat? I assume you've eliminated harsh soaps, lotions and potions....Vit A & D Cream helped soothe the skin. Where exactly is your pain? biscuit
patricia87844 Guest
Posted
Hi eggbiscuit, thx for your email. and now on to the answers, am on Clob 2x a week, use olive oil after voiding, no soap in that area in shower,just plain water,. I eat good meals, veggies potatoes and meat most of the time, some pasta, and good breakfasts with lots of fruit on cereal. occasional glass of wine. The pain and intense burning is up inside vaginal area. I wake up without any pain, seems as soon as I stand up it hits, gets worse as day goes on. It has occurred to me that just the pressure being upright ( body weight (120 at 5 ft) brings it on. When it gets too bad, I lie down for a while and it feels better. Have never had thyroid tested and never heard of Estradiols, will look into it. oh should mention, had had many bladder infections over the years. I have wondered if this has had any bearing on causing L S. I am 87 yrs old and have had this problem for 1 1/2 years.
hannah19230 Guest
Posted
Hi -
Thank you for your response! Interesting that you brought up Hydroxazine bc I actually do take that for anxiety - but only as needed.
My biggest fear is that if it is LS - I might not have the right steroid and why its not helping. The itch has been for 2 years and still no physical signs (which is good if it is LS) --- I wonder how long people can have symptoms before it shows physcial signs.
I've been thrown into a whole new world here. I had BV and yeast years ago in the past, but it always cleared up and I would move on. But after that last bout it threw me into a tailspin.
I am in the US and in Los Angeles - I should have access to the best care, but I feel like everyone is failing me. But unfortunately, it seems like a lot of women go through this same cycle for years. 😦
Guest hannah19230
Posted
Hannah,
Yes, one would think in LA you would have up to date care. I'll bet if this was a man's problem there would be millions for research. I am in Georgia and have seen now, as of yesterday 6 gynos. Two were absolutely useless but not before they charged the insurance company hundreds. I have not had any yeast or menopausal problems and my intuition (which has always been super) tells me this is something that our lives/environment has brought on and therefore we hold the answer to it. If you are 32, then it is not menopause. If you have no physical signs, how did the gyn specialist say you had LS? Just askin'. Did you have a fall where you hit your pelvis at any time? Wondering if your pudendal nerve was impacted at any point in the past?
Guest patricia87844
Posted
Hi Patricia,
Sounds like pelvic floor issue, or pudendal nerve, or infection. A vaginal culture would rule out the bacterial issue and is not painful or very expensive. Medicare (in the US) pays for that. There are tons of estradiol preparations. Lubricants may help just put some moisture there because tissues dry out as we age. I am 63, soon to be 64. (unsure I want to be 64). My pain is all external and dermatological. Best in am and worsens as day goes on. Are you taking anything for pain? Have you tried a borax or baking soda sitz bath? Ibuprofen helps and so does gabapentin.
For some folks, anything from the nightshade family (potatoes, tomatoes, etc) can bring on symptoms. If you have had UTIs, I suggest going to the healthfood store and getting some D-Mannose powder. My mom, before she passed, had UTIs but the d-mannose kept it at bay. I take unsweetened cranberry juice daily and that has helped a lot. Blessings.
biscuit
hannah19230 Guest
Posted
Hi Eggbiscuit -
I know, I'm in Los Angeles and should have access to the best care, but here i am! You're so right about the men thing, but I actually have seen a lot of them that are suffering from LS too 😦 I don't remember falling or hurting that area, but I can ask my doctor about that tomorrow morning.
The specialist suggested LS because my other gynos and tests had "ruled everything out". That was my first time seeing her though, my other doctors had been trying to help me for 1.5 years and LS was never brought up.
To give some background, I'm 32, have had genital herpes since I was 17, but I've only had maybe 3 breakouts in my life - other than that, my vagina was great, no smell, normal discharge, had a great sex life, etc. In 2017 around July/Aug - RIGHT after I broke up with my long term boyfriend, I stupidly had unprotected sex with someone who ended up being high risk for STDs (found out he was doing the same with multiple women) - I tested positive for BV immideatly. I had BV once in the past and thought a round of Flaygl and then maybe one course of yeast medication (if I got one) would be all I needed and I'd be back to normal. Boy was I wrong. I went back in and starting testing negative for yeast and BV, but kept having symptoms. Then in one of my tests my GP told me I tested having Ureaplasma and that could be causing my symptoms. In 2018 - I'm not joking, I think I took 8 or 9 rounds of different antibiotics and nothing helped. I went through this endless cycle. They then said if it was the ureaplasma causing my symptoms that the antibiotics would have taken care of it. From my research Eastern and Western doctors, even US vs. Europe have different opinions on this.
Sometime in mid-late 2018 I went to a second gyno to get another opinion. She was at a loss at my first appointment, said everything looked normal and healthy - all tests negative. The next appointment with her in Dec 2018 we were trying to think outside of the box and she suggested I take valtrex daily bc maybe my HSV (herpes) was just causing my nerve endings to fire off and the herpes might be showing different symptoms than normal (no sores). It actually seemed to somewhat help for a bit, but I'm not sure if it was even the pills, bc the itching came back. So then I finally got an appointment with the "specialist" at UCLA hospital and she is the one who suggested LS, gave me mometasone and it doesn't relieve my itch.
I have no pain during sex, no pain other describe sitting down or doing activities, its just itching.
At this point I've seen 2 gynos, the specialist, a GI doctor, a dermotologist, literally anyone I can think of that might have to do with this. I want to get back to the Derm soon and see if he sees any signs of LS too.
I also have had issues with cysts, still trying to figure out if I have endometriosis, etc. So, I've had a LOT of trauma in the same area. It blows my mind to be honest.
That's my story! Lots of medications and creams inbetween all this.
hannah19230 patricia87844
Posted
hi Patricia
Im so sorry that you are experiencing that much pain. i understand the deep depression that comes along with this. its so hard, but we have each other here! ❤️
susan43705 hannah19230
Posted
Wow Hannah, you have been through a lot.and seem to be covering your bases with doctors. Clobestol is the only thing that works for me with the insane itching. I'm wondering if an antihistamine might help with the itching. Does a sitz bath help? You probably answered that somewhere here.
I hope you get some relief soon. All I can say is thank goodness for the support on this site. Take care.
Guest hannah19230
Posted
Well, that is a lot of stuff going on. How much and what kind of water do you drink? You are too young to have all of this but, yes, unprotected sex can bring so many problems. Are you avoiding the usual things like sugar, wheat, etc??? If it is ureaplasma (mycoplasma) then it generally comes through sex. I would avoid sex for awhile, get on a liquid probiotic (not a tablet) drink lots of good water, and stop all sugar (not easy, I know). Sounds like the bacterial balance of the vagina is off and needs to get back to normal. Let us know.
biscuit
hannah19230 Guest
Posted
Hi -
Yes, I agree - I feel like its more that I just threw everything off with all the antibiotics and bouts of BV/Yeast and NOT LS, but its just so hard to figure out. I've tried to cut sugar and carbs, but have not been consistent at all, its so hard. But I KNOW thats what I need to try to get under control first.
Most of the water I drink comes from the water cooler at work or my tap at home then filtered from a Britta filter. I'll get back on a probiotic asap as well.
I saw my normal Gyno this morning and he said everything looks normal and perfect. Ugh. I see the specialist Aug 8th for my followup, hopefully more clarity then!
Guest hannah19230
Posted
Hannah,
Dump the Britta. Read several studies on those and they can put more junk in than they take out. Get Zero Water or Berkey if you really want good clean water. City water is full of flouride and chemicals to keep it potable. Britta puts in aluminum and you don't want that. I am a professor and you can google "Problems with Britta," and see for yourself.
I totally know how hard it is to give up carbs and I dont think you have to. Cut the refined carbs: sugars, high fructose corn syrup, and ALL artificial sweeteners.
So your gyn said all looks normal? Confusing.
best, biscuit
hannah19230 Guest
Posted
yes, my care has been BEYOND confusing. I will defintely change my water starting NOW, thats an easy one.
Thank you and I'll update next month after my procedure.