I am in so much pain I'm reaching out for help ...very sad.
Posted , 12 users are following.
I am 65 and have had this condition for 6 years. Ihave tried all the home remedies.Everything burns like crazy. Everytime I see the doctor she tells me to keep using clobetasol and estrogen.I've had some success,but now the skin is really getting thin.Extra stress has sent me into a very painful flare. Now dr is talking about oral steroids,or,steroid injections,antidepressents.I don't like any of these options.What to do? Is it aggravated by stress,diet thyroid problems,depression?? This is a condition that needs more research!If any of you can give me an idea to calm a firey flare I would be very grateful. Thank you and sending good thoughts to all who suffer with this condition.
1 like, 17 replies
Bchatham michele30144
Posted
lola85666 michele30144
Posted
Have you googled the clinical trials that the government is doing to treat LS? There is one now using PLatelet Rich Plasma therapy. The trial will concluded this October. I am hoping this will be a way to effectively treat LS. Check it out.
Sorry to here you are in so much pain.
deb09833 michele30144
Posted
Yes cutting out sugar from my diet helped enormously as did eliminating stress (sometimes easier said than done). Once I was aware of how badly my body reacted to stress it was enough for me to using other methods of dealing with difficult situations.
good luck and I hope this helps a little x
BARBARA1954 michele30144
Posted
Sedg michele30144
Posted
I feel for you Michelle. 🙏
Just so you know I am 67 yrs and was diagnosed 17 yrs ago. In that time I have had several years of no symptoms but this sneaky disease has restructured the architecture of my vagina
I myself had a massive on fire 🔥 vulva following an extremely stressful period fairly recently It is over now as I removed myself from situation to get myself on track !!
I used coconut oil to put out the fire Dermovate once the burn had gone. No knickers or very loose clothing.
Over time I have eliminated sugar as far as possible from my diet. Being mindful of eating any foods that bring heat into your body. Working with a mindset of sorting out inside your body will help
I am sure.
In truth Michelle no one has a solution for L S We are all helping each other here. Doctors know less than we do. There is no research going on that can possibly pin point solutions for this dastardly disease but it can be managed
Don't let your doctor bully you into anything. Being anxious about LS is not depression What of these steroid injection she speaks of ? My Professor of all things Vulval 😊 Who is forthright honest and full of empathy for women with this condition confirmed money is not available for research into LS So we must be strong in ourselves and not listen to non informed doctors.
There is a list of remedies that help different individuals in managing LS as that is all anyone can do in truth.
I use coconut oil, aloe Vera, Colloidal Silver (great healer on tears and cooling)
Dermovate as I have a tear near my anus that obviously is difficult to stabilise.
Lots of Stress bad diet SUGAR. crazy lifestyle all contribute to flare ups.
Michelle sorry to write so much but it is difficult to reply in short as what works for one hairy Fairy doesnt work for another.
I am waiting for the Vagina Fairy to get her act together and wave her wand 😂
🙏 Your Hot Spot feels better soon Michelle
Love ??
lola85666 Sedg
Posted
You had mentioned there is no research . Just wanted to let you know that there are several clinical trials going on. One in the US , which will be concluded this October, on using Platelet Rich Plasma treatment. Goggle clinical trials. I am watching this one very closely.
Lola
Sedg lola85666
Posted
Thank you Lola for info. May I ask where are you from ?
Also US is a far cry from UK. Trials where they are looking at one solution is great if it works for the individual.
However on this forum alone there are numerous products used to manage this unrelentless condition.
Any research can only start with the thousands of people who suffer daily and their story. To get a clear picture
of who why and what triggered LS.
Clinic trials take years and years to come to any real conclusion in the meantime my Vagina has been eaten and rearranged by the LS goblin and its sneaky friend Fusy Snake.
Prof Kehoe said there is no hardcore research going into LS in this country due to no funding available.
We need to rise up and shout from the hilltops
How? you say can we make vocal the condition of our Vaginas to the world to at least start to get the powers that be to listen.
I am so fed up today with the constant secret battle between me and LS
It's a sad bad painful where do I go from here Day 😰
lola85666 Sedg
Posted
Hi Sedgwick,
I feel your frustration. On the US government website NIH , they say LS is a rare condition . This is why no funding. I believe that it is not rare and that many women go misdiagnosed or undiagnosed .
I can't believe I have it. My intuition tells me that it can't be an autoimmune disorder but something that is triggered by a parasite or virus or allergic reaction which starts the itching. And the constant scratching causes more problems and perhaps is the underlying cause of the disfigurement. I'm no doctor or expert it's just my thoughts about it.
It seems when the doctors can't find a solution to a health problem they call it an autoimmune disorder.
I am in CA.
I used Clob for a month. My body responded quickly. I still have some white skin on one side but no skin ulcers. The 20 minute sitz baths with baking soda and organic castor oil twice a day is helping.
My GYN says she has a lot of patients with LS far more sever than mine. This cannot be a rare condition . We need to somehow let the medical field know that this is not rare. I have no idea how to do this other than all of us writing letters to our government agencies who do medical research. Bombard them with letters and phone calls.
Wlparadise lola85666
Posted
is a data collection site. I tried to get my Facebook LS group to sign up so WE CAN BE COUNTED. No one did nut me.
Join our page for other info and support. Ugh lichen sclerosis support group. The icon is a post it YOU ARE NOT ALONE
Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.
http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
BARBARA1954 Sedg
Posted
debbie18443 michele30144
Posted
Hi Michele,
I'm so sorry to hear you're so troubled by this horrible condition at the moment. Yes, it's a tough one to deal with but there are home remedies that can really help.
We are told by our doctors that clob on the mucosal skin of the vulva doesn't thin the skin. I have found it very irritating though and now use a less potent steroid which suits me much better. I have also recently tried the Borax treatment which I love. It gives me relief from the burning and stinging which I believe too many steroids have caused for me. I also use pure organic vitamin e oil at night and castor oil during the day.
I know that we are all different so this may not suit you. It could be worth a try though as before this I was using steroids quite heavily and now only once or twice weekly and symptoms are settled for the first time in 18 months. The symptoms are stressful and stress is your enemy as it exacerbates any health issues. Do keep trying home remedies to complement the steroids until you find one that suits you. I know many have found Borax good.
Keep using this forum as the suggestions and support it offers are great and help you to feel you are not alone with this condition and its problems.
Let us know what you have already tried and it'll help us to help you.
x
Cupcakes1219 debbie18443
Posted
Can you describe to me how to do this "borax" treatment? I am suffering greatly for months on end, I am closeted up in my home now, thankfully I work from here. I don't want to go about and I dont want to see people unless I have to. This is so uncomfortable. Just got some Emu Oil...it has made it feel just a tiny shake better, but it's really not resolving... any advise on the borax and how to do that would be wonderful, thank you in advance.
debbie18443 Cupcakes1219
Posted
Hi Cupcakes,
I understand how you feel about going out. People don't see or acknowledge this 'side effect' of LS. The discomfort can be debilitating.
Have a look at the thread 'an experiment with Borax', that's where I got to know about it. I've been making up a small quantity of water with just enough Borax added so it's just saturated (stopped dissolving) and applying this to the white patches with a clean cotton bud morning and night. I find it's very soothing once dried naturally and calms the redness and irritation most of the time. When things begin to flare again I apply the steroid sparingly, usually once or twice a week. This is the best I've been in a long while. I use vitamin e oil at night before bed and castor oil in the morning (all organic). I wash gently with Hydromol ointment which I find to be good barrier too when needed. All the usual advice goes with this: no fabric softener, non-bio non-fragranced washing liquid and an extra rinse for my cotton undies. Go without when you can. I'm sure you know all that. Good luck! Hope it works for you too. A big thanks from me to all the ladies that post here as I'd never have know these tips without them 😘
Sedg michele30144
Posted
As an LS victim I really want to know
Wlparadise michele30144
Posted
Steroids thin the skin. Antifungals... there are many often help with itch. Use a NON SOAP cleanser on the area 2x day. Also hand wash underwear and no scents or fab softeners. Aquaphor is a great barrier cream. Per won't sting. Mona Lisa touch treatments is what thickened my skin and brought my physical structure back to normal...except the fusing. Need to use lots of patience and use them 2x a day 20 mins. Lay down and watch a tv show. They can be purchased on Amazon $49.. set of 5 they are pink.