Very severe symptoms, does anyone know of an LS patient like me?

I’m writing back not because I know a whole lot as I only joined this group a week ago, but because I’m one of this community now and want you to know you’re not alone.

Over the last few days I’ve changed my diet to close to an autoimmune diet and started taking vitamins never used before. All because of what I’ve read here. About the real differences these have made to the lives of a many others sharing lots of their own experience and research. 

I’m older than you, but had never talked about LS and know what that feeling of being alone with it is.

Take heart, there is hope here! 

Sorry to hear your story Jessica. You are definitely not alone. I found that whilst I do a daily routine, I still need to mix it up and at the most would miss a day if travelling. I don’t believe they will find a cure in my lifetime. I just do what works for me and keeps all the symptoms at bay. It’s great that you had success initially and I hope you do again. I changed my diet, Sitz with salt/water or borax/water. Paw paw ointment after shower in morning and vitamin e capsule cut open in the evening. Everyday. It works for me. Good luck 😘

I can manage it so it doesn’t interfere to much with my life to much, I use hydromol ointment for everyday moisture and dermavate ointment a steroid for flare ups. Unfortunately I’ve recently had the experience of it affecting my ureatha making me feel like I want to pee all the time, which is most annoying. Keep your chin up you will get it under control again. Hoping you feel better soon. X

Hi Jessica, Bless your heart, you've been through hell with this awful condition so I am SO glad you've have joined this community of LS ' warriors' 😊 ! You're certainly not alone but the condition can make you feel isolated coz lets face it, who wants to talk about their vulva to friends ???!

Sounds like you have the diet sorted and medication. I personally just use Dermovate twice a week as maintenance and Hydromol as moisturiser / barrier cream daily. I spray water with some bicarb of soda in it after urinating. I too have started recently on an anti inflammatory / autoimmune diet and have been watching loads of videos on YT about autoimmune diseases and diet, it's very informative. Hope your flare up settles down very soon and that you can get your life back on track again Jessica. Let us know how you're getting along. By the way, I was fascinated to hear that Testosterone unfused your clitoris ! Not heard that before. Take care and again, welcome xx

Except for your course of treatment and fusing, our story is the same. My primary symptoms are swelling, redness, and painful burning. One of my inner labia is about half the size it once was, and there were days where I couldn’t move off the couch because walking was so excruciating. I’ve been on a mild  topical steroid ointment (Desonide) since November and I am doing a lot better. I also cut out sugar from my diet and eat fewer carbs since the body turns that into sugars. I’m still not completely under control, and am on the tail end of a flare up right now, but at least I can walk again and even exercise. I bought a stadium cushion to keep in my car in case I go to a restaurant or event where there are hard seats — on of the things that makes me swell up — so I can actually go out again. I also use A&D ointment when i’m going to be especially active, and use a drop or two of olive oil on a normal day. The lubrication helps keep things from rubbing too much. I still get depressed when I feel like I’m doing everything right but still get a flare but at least I have hope that I can live a mostly normal life. 

Hi Jessica, I think you should revisit Dr.Shier, and repeat what he did the first time. It worked! I am considering hormones, and appreciate the input you gave. I also spray with spring water, no chlorine in it, after urination. I wouldn't be able to stand it if I didn't. Even in the shower, I can't use shower water there. I take peri bottles and fill with spring water, into shower. I use Cetaphil cleanser externally. I also have it in my mouth, I think, recently, very painful, hard to eat, talk , or brush teeth. Haven't tried steroids yet. I have fusing and sometimes feel like a BLADDER infection, but it is just the inflammation. My diet has had to change for both mouth and vaginal area. No citrus, coffee, tea, nothing acidic. No vinegar dressings, nothing too thermally hot or absolutely no spicy foods. Sugar is greatly reduced, which is difficult for me. Hot weather with humidity is the worst, especially living in Florida. I wear no underwear and no slacks, jeans, or shorts. It is amazing to me, just reading this, how I have altered my life. Hardest part is not discussing with family and friends. I.learned the hard way that that is not a good idea. This group of women who share our pain mentally and physically, are a Godsend. You might read the information in this forum about Dr. Newman, in California, who has had great success with stem cell treatment. Stay with us, Jessica, and keep us informed with your treatment. We all have ways of helping with our suggestions.

Hi Jessica,

   Welcome home! So many of us have experienced frustration, disbelief, anger because of this illness. When I was first diagnosed I thought I was a pretty healthy person and I couldn't believe something like this could happen to me. I didn't want to talk to any friends about this because I felt they would see me as inferior or feel sorry for my husband. Boy, can our minds think of some awful things! I think what you are feeling emotionally is completely normal. After going through what I call my mourning period. I got busy trying to find out everything I could about LS and autoimmune disease. I feel now my life is healthier than ever and think if I would have continued eating the way I was before, I could have ended up with an even worse disease. I think this was the wakeup call I needed and I am grateful to be able to share my experiences with everyone here.

Jessica, you poor love. Welcome to this lovely community, though we are all sorry that anyone new has to join us. You sound like you've had an awful time and we all reach out to you with big hugs.

My experience of LS is different to yours, but I can forget for days at a time that I have it now, as long as I keep my routines going. There's a wealth of information on this site, all gained through experience. LS seems to be very individual in its appearance and remedy. What works for one person doesn't work for another, or works even better...

Experiment, find yourself a few things to try, then circulate them. Using one thing all the time stops it being so effective, so ideally find three things you like (olive oil, emu oil, over the counter things, my personal favourite avocado oil with essential oils in...the list is endless). The important thing is to keep moisturised down below, it slows the fusing, wash away traces of urine after a wee, avoid soaps and perfumes and watch your diet.

I'm sorry if you know all this already, just thought I should flag it up just in case.

In any case, keep posting, chatting, reading. The one thing this site teaches you is that YOU ARE NOT ALONE! and we all support each other here.

Love and support

Bridge

Hi Jessica,  I totally understand  how you feel.  This site has been a lifesaver and chock full of information.  But a lot of whatever is recommended is different for everyone—diet, ointments, creams, etc.  We have to be our own detective.  I've been living with LS for 10 years.  I go through periods of remission, but they don't last long.  I get so excited thinking I licked it, but, no.  For me I realize that if I eat spicy food, it affects my LS; I'm experimenting with different soaps; taking lots of Vitamin D3; Clobestal (sterioid cream) when the itching is severe only sparingly; and daily maintenance with castor oil. Someone had recommended mixing castor oil with Lavender and Lemon Verbana oils.  More Lavender than Verbena.  

We have to realize we will never get rid of LS totally and that daily maintenance and mindfulness of what we eat is important. LS has stopped me from dating and having a relationship, which makes me very sad. 

I hope you find a combination of things that work for you and know that you have lots of friends here.

Take care, Susan

 I have just seen a specialist who gave me Hydromol.  It has changed my life!!! I put it on all the time.  Every time I go to the loo. every time I itch.  Before bed, when I get up etc.  Within 2 weeks I saw an improvement. 2 months later hardly any symptoms, just the occasional itch that stops when I apply cream.  Try it x