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Please bare with me and my English, it's not my native language but I am going to try my best for you to understand what I have to say. I have nothing to lose any more.
Hello everyone, im new to this website and I am desperate for help.
My LS case is very severe (to a point that I wouldn't be surprised if I had the worst case of LS in this forum).
I am going to try to make this as short as possible and I appreciate any help I can get from you guys.
To begin with, I am a 24 year old female. I've been healthy all my life. When I was 13 I started to get bullied in school and on top of that I was sexually assaulted by an older guy from a friend circle. (He wasn't my friend but he was friend to one of my girlfriends). So yeah my depression started at age 13. I never told my parents about the bullying in school or the sexual assault. When I was 14 I was then again sexually assaulted by a boy in my school and I never told my parents about it, nor a teacher or principal. My bullying journey went on from 13 to 15 and I was pretty much "alone" besides having my mom and dad.
Yes I was that girl who had to hide locked in the bathroom at school to escape bullies, I hide in bathrooms and in library and skipped every lunch. When we had break in school during the day I couldn't wait until the break was over so I could go back in class, meaning; I felt more safe during class/study time.
So at the age of 15, all the st began. Severe depression, anxiety, stress, worrying, vivid nightmares, insomnia. Basically everything went down the s***r for me an my health. At the age of 15 was when the itch of hell broke out. The intense itch started around my anal and spread all the way to my vagina. My LS is classic 8-shaped white spot. My depigmentation of the skin started very early. Everyone of you know pretty much how it feels to have LS so I do not need to explain how painful it is.
I've had LS for 9 years and I've never told anyone about it. So I've left it untreated for 9 years. And you can only imagine how that would look like right? Now, recently a month ago I decided that this is not a life I want to live. It feels like I've been living in hell for 9 years. During these 9 years I never went to college and I was unable to work due to my severe case.
My parents and relatives around me think im just lazy when in the real fact I've been in horrible pain for all these years. I've stayed inside, in my room, barely went outside. Whenever I go out I feel a "shock" to being exposed to the sun because sometimes it can go weeks for me to even be outside. For 9 years I've been in extremely pain. Pain in my whole body. Besides still being depressed, stressed, anxious, worried and the feeling of not had a good night sleep in 9 years - is not very good. I can't remember how many years ago when I last slept OK.
The pain, the ITCHING, the burning, brusing, bleeding, raw skin falling of, the oozing of rotting flesh.
This disease feels like it's similar to MS but the difference is that LS attacks our skin and MS attacks the muscles. My vagina smells NASTY. It's oozing out rotten smell. My groin smell like dead meat. Sometimes I just have to lightly pat my fingers around my affected area and skin will fall off.
I dont know, it truly smells like my vagina been having a ROUGH time. Can it be candida? Why does it smell so fricking bad? It almost smells rotten both inside vagina and in the groin. It's oozing out.. I have constantly "cottage cheese" texture inside my vagina and I try to scoop it out here and there with only water but it never disappears.
I have some serious issues with my thyroid. If I eat anything sweet, spicy or drink milk my throat will go crazy and it start to produce a lot A LOT of mucus to a point im going to suffocate on mucus. My thyroid went down the s*****r too, I dont know if it's linked to my LS.
Ontop of that since I got LS and problem with my thyroid - I gained 77 pounds or 35 kgs.
Pants, shorts, tights, leggings, trousers (panties) are a big nono. I haven't worn anything of it for 9 years because I simply can't, it's too painful.
Hmm what more.. Oh yeah I pee myself lets say... every single day? My bladder is a mess, I can't hold my pee. My brain give me signals I need to pee and within 1 second if I dont find toilet in the very same second I most likely will pee myself. I have days I pee myself many many times in one day. I can't hold pee at all..
From my visit with the doctor around 1 month ago, I did the byopsy and I was told I had LS. They told me I'm going to have to live with this for the rest of my life and that they can only prescribe me some steroids cream. My blood test showed that my levels of vitamin D was critically low. (no shocker because I stayed inside my room for 9 years after I went into depression).
My next appointment is in almost 1 month and Im gonna take some more blood test, urine test and Im gonna ask for them to look up what's going on with my thyroid.
Now, I need YOUR help, all help I can get. Please answer these questions for me and I would be so thankful.
- What foods/drinks do you recommend for me to eat/drink?
- What foods/drink should I cut out forever? (I am willing to cut out anything).
- Has anyone out there ever "cured" themself? Or atleast lowered the symptoms?
Has the skin healed and pigmention grew back?
- What vitamins, minerals, nutrients is a MUST for me?
- Do you know any holistic practitioners/ TCM practitioners/doctors who could help me with my severe case? I don't care where in the world they live.
- Do you recommend any creams, steroid creams?
- Do you recommend any supplements and which kind?
Please share all your tips and advice.. I really need all help I can get. It feels like im slowly dying.
Im trying to let go of the past, my depression and resentment that I believed has played a big part of the cause of this mess im in.
I just had a reality check with myself. If im not healthy and taking care of myself than what's the point of living? All I know is that I want to live, I want to start take care of myself and I'll never let down my body or neglect my body again like I've done for 9 long years..
Here are some pictures of my current state of my LS:
0 likes, 9 replies
I am so sorry to hear how you have been suffering. i am glad you found this forum it has lots of great information for you.
please use the steroid cream, it does help but nit a cure all and can cause thinning skin which can lead to bigger discomfort.
my situation early last year seemed to be out of control and these are the things that has calmed it down, i was doing great up till the stay at home orders and then i began eating carbs and it is trying to blow back up.
Diet...try to go keto or low carb if you can. You have to give up the sugar. Diet does affect this. However when you are looking for sugar free substitutes not all sugar free substitute sweeteners are bad for you. the peeing thing? that can be triggered by nutrisweet, stay away from diet colas if they are sweetened aspartame, the stuff nutrisweet is made out of.
Bath water, yes you will want to enjoy a bath. i learned on this forum that borax soap is good for this condition and it did help me. i put one to two tablespoons of borax, Epsom salt and baking soda in my bath water. i would maybe take a bath every other day if not nightly at first. i also learned the best time to put the steroid cream on is after your bath.
when i was really bad i also alternated the medicine with a mix of coconut oil and lavender oil.
t tips.. these are my best tips, i pray you will fin some relief soon. please do look around the, very helpful women ad a few guys around here.
Am so sorry for what you have been through since 9years. I went to research for some info that could be of help to you but there's alot to tell u. So my directives, download MedSpace App. When you do type Lichen Sclerosus in the search handle, then study everything it brings. It basically have most of the answers to your questions.
Hi Isabella, first of all, you do have everything to live for !!! I'm so sorry to learn of your past experience and the need you felt in locking yourself away for 9 years , I'm not surprised you now suffer with depression/anxiety etc. Your pics suggest you are in a great deal of discomfort, it is a horrible brutal disease, but don't be disheartened, with the correct professional help, and the correct diagnosis/ medication, the quality of your life with this condition of LS....if you are sure that's what it is, can be totally turned around !!! Currently their isn't a cure for LS, it's a chronich autoimmune skin disorder and having a thyroid condition doesn't help but you can have a better quality of life....at the moment you appear to be merely existing my love. However, you can start to help yourself initially by ......stopping shaving, you are only irritating the area even more, don't use any soaps/ shower gels/ perfumes on or around the genital area at all, they can and normally do, make the discomfort heaps worse !. Clear water is all you need !!! Some ladies/gents find that cutting out all sugary food/drinks etc also helps as LS seems to thrive on it. In the meantime, try using a moisturiser to help ease the inflamation and discomfort. Many ladies use coconut/olive oil/hydromol ointment and many others. They can act as a barrier for the urine, and offer great relief in conjunction with prescription meds. This forum offers great tips and advice, but more importantly it offers unmeasurable support when you are feeling alone, afraid, and at your lowest point!!!. I sincerely hope you get the help and advice that you so desperately need at your up and coming appointment with your GP. I wish you luck on your journey but don't let the past define your future.....you are worth it !!! xxx
hello...your letter was SO heartbreaking - to think of all u have been through - u r a true savior...I will give u some suggestions - as my doctor has written books on LS...1. NO sugar or processed food - try to eat organic (take some good vitamins)..2. cut out alcohol, sugar and anything that is not fresh (from the earth)..3. there is no cure - was told I would be on a steroid as well as a hormone cream (I am 68) for the rest of my life (IF it can be controlled u can deal with it)...4. I take a multi as well as fish oils and edleberry AND getting enough natural sunlight (for vit. D) is very important...5. my doctor (Dr, Paul Nyjesy) is at Jefferson Hospital in Philadelphia, USA...(he is a genius with LS and any vaginal issue...6...there r many holistic ways to treat some cases BUT clearly do not know how well they would work for u....epsom salt baths (but u have to make sure this does not dry u out even more as there is a lot of magnesium in this)...organic coconut oil as well as vaseline, emuaid max (is a fabulous product...holistic - for so many skin issues, no shaving below, sleeping with no underwear on (to air out) BUT using the prescription products such as your steroid and hormone cream r MOST important and of course number one is finding a doctor who knows about LS and makes the right treatment for u to follow...from the very bottom of my heart I wish u the best of luck on your journey...perhaps after u find the right person to help u heal your vaginal area u can also find someone to help u deal with your past...we ALL have "stuff" from the past...WISHING U THE BEST!!!
P.S. it is time to share this and all u have been through with your Mom - having someone on your side will be a tremendous help...
I feel so much for you reading your story... I am almost the same age as you and I can relate a little to some of the things you wrote. I am very introverted and felt like something of my life and youth had been taken from me when I had chronic joint issues and then symptoms of LS.
I think the replies here will help you.
I also think you should definitely take some vitamin D, perhaps see a gynaecologist and get a prescription for this and the steroid cream - as other ladies here have mentioned (and their tips for self treatment too).
It is often the case thyroid issues aka autoimmune issues go hand in hand with LS.
I hope you can find a helpful doctor and get back on with life and get better.
Best wishes and hope you find some relief.
I think all of the women on here feel badly for what you've been through and how much you've suffered. You must speak to your parents. Wouldn't you want to know if you were a mother and your daughter went through this? Even if you just began with the over the counter things like vitamins and changed your diet, that would help. But, please, I urge you to get professional help. As the others have said, this is something that has to be managed and I'm pretty sure once you get help for the thyroid, you will feel much better. I know I did. In the meantime, Vit D and perhaps vaseline or EmuAid mixed with coconut oil, even some Vit A and D cream (it's cheap) but do try to get help.
We are So glad you found us and have begun your powerful taking charge of your life.
Yes - yes there is So much that will help you feel better. Moira and others have given great suggestions so far. And in my experience my whitened or reddened skin has gone back to normal when As others said, Vitamin D and other supplements are taken. Vitamin D is the kingpin and is absolutely imperative. There are a whole slew of complementary supplements that work in balance as well.
Please read the articles that I literature-searched a couple years ago for the complete list. I know it is long to read, but you need, we all need, to become our own advocates for our health with knowledge. THese foloowing are listed on my profile page under discussions but I repeat them here for your convenience:
This one was my first diving in to the subject and following the trail:
Also want to let you know that I too had terrible problems with urge incontinence.. and somehow all the supplements i have been taking based my my discoveries has cleared that up - or almost. And I finally discovered a professional article that indicates that melatonin is the one or one of the ones that must be working for me the most.
oh, and when you go to your next appt and ask about thyroid, be sure to ask for the TPO test not just the TSH and T4. That is what I hadn't ever been given and it took 15 years before my new cardiologist told me about it and I finally got levothyroxin. WOW! my life changed. I hadn't realized I had been feeling low energy for years really - I'd just been "pushing through" life.
Isabella, didn't your new doc give you a prescription for candida? I"m 74 so thing have changed, but I think the medicine to clear up the vaginal smell is now over the counter - in the U.S. (where are you?). by the way, you reminded me that a couple years ago when i first realized this itchy pain, I had kinda wondered why I smelled kinda fishy - ha.. apparently that is an bacterial infection. I used oregano oil extract to get rid of that. I'm glad you have another doctor visit coming up soon. Be sure to tell him/her every little thing in order to get the best help. blessings,
Thank you for sharing your story with us, and Im so sorry to hear all you have been through. The good news is that with trial and error, and perseverence, theres a lot you can do to improve your symptoms. A few thoughts from me - ) i get the cottage cheese stuff too sometimes, when its internal its often not LS but something else as well, when you go back to the doctor ask them to test for thrush and bacteria vaginosis- i often get thrush and it makes it all so much worse when both are bad. Look at vitamin D supplements, use an emollient, coconut oil or something, and most important, be patient with yourself and trust that over time taking care of yourself this will get better. You will have future flare ups too but it wont always be this bad
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