I have been suffering almost constantly for the past two years with problems down below. Itchiness, soreness, difficulties having intercourse. Bleeding after intercourse. I checked myself in a mirror yesterday and noticed angry red blotches and lots of white areas. Also I noticed that a part that was there before was just not there anymore! I am 42 and have not gone through menopause yet. I have recently been diagnosed with another auto immune disease, hypothyroidism. Can anyone give me any advice, does it sound like I might have LS. I've tried antibiotics, canesten cream, emollient washes, emu oil, olive oil, sudacreme, nothing seems to help!
hi g
it does sound very much as if you've joined our club...so sorry but hope you will find help and support here.
i would be very careful with anti-biotics....and what you put on the area has little impact but rather addressing things from the inside might help you. You might find that avoiding gluten offers relief for example.
Hi G3,
Welcome! Everything you describe sounds like LS. I think if you look around this forum you'll find that yours is a familar story. You should be seeing a gynaecologist ASAP. It's unlikely you'll need a biopsy to confirm LS, since you have white patches. A lot of women here do seem to have other auto-immune disorders. It's not so much that they cause LS, but that some people are disposed to auto-immune disorders.
The standard treatment is the most potent cotricosteroid ointment available. It's the only thing that can penetrate the extremely thick, poor-quality skin of LS to the inflammatory cells in the 'basement' of the skin.
I've had LS my whole 62 years and have had more painful sex and pain after sex than any woman should suffer while being missed by GPs, gynaes and dermatologists all the while. All I can say to you is – good for you that you used a mirror and looked the symptoms up!
If you want a fabulous one-hour crash course, you should think about watching Dr. Andrew Goldstein's presentation. He's a world-leading doctor of 1200 LS patients. I was diagnosed a year ago (finally) by a young gynae, but there are a few things I learned from Dr. G. that are already making a real difference. Don't say, "Oh, no! Not steroids!" until you've heard Dr. Goldstein out. My other thing is psoriasis and I bucked the drugs for a decade after using them for thirty years. No good came of that. I believe in diet and lifestyle and all the good things like cotton panties and no soap, but LS is sometimes quite aggressive. It needs lifelong treatment.
I'm posting a link to the discussion here. The top paragraph contains a link to the lecture. It's audio plus (quite graphic at times) Powerpoint slides (with the pointer often pointing to the wrong thing, so look carefully at the labelled drawings so you know what he's talking about).
https://patient.info/forums/discuss/dr-goldstein-lecture-271556
Hope to hear more from you. Between the group of us here, we're finding better ways to manage LS that we ever would have known without this forum.
I side with Morrell. LS needs, I think we can say that now, a variety of treatments. But the main 'tool' we have is steroid ointment or cream. Support that with the use of emu oil, coco nut oil and the like, to make it more liveable. My artificially induced hypo thyroid problem in combination with my adrenal glands disfunctioning may have contributed to the LS, due to low immune level. Hard to tell. Not an awful lot is known about what causes this illness, really. I believe that early detection is important to stop the process of debilitation with the help of globetasol. A healthy lifestyle always contributes to the body coping better. It makes the load lighter, so to speak. As well, know that any form of irritation will aggrevate all down there. The hardest part for me was the sexual aspect. Not easy to live with at all. I hope that all of us here form some kind of support for you.
Hi, It does sound like you've got LS, especially as you have hypothyroidism, like me. There is loads of advice on here, and you could easily find something that will help, but first things first, go to your GP and ask to see a gynacologist or dermatologist. I was diagnosed at a GUM clinic and was given a steroid cream, dermovate, and also told to use dermol to wash with. For the most part I'm fine, but I'm widowed without a sexual partner so no sex for me, unfortunately, so don't know how I'd cope if I was having it, but YES do a good water based and also an oil based lubricant for use during sex. I have heard that coconut oil has been used by some. There are other vaginal lubricants available. I hope your GP is understanding and is willing to learn if he doesn't know much about LS, as the chances are that he doesn't know much if anything, from what I've read on most forums for LS and in my personal experience.
Good luck, at least it's treatable, although not generally curable.
Keep looking on this forum, one day there may be an answer for all of us, at least I hope so.
Is it possible to have intercourse again? I'm afraid that since this all started my boyfriend feels rather neglected. It's not that I don't want it, more like I'm afraid of the long suffering painful consequences afterwards
First off Im so sorry you have joined our LS club. But lots of helpful info here.
I am 42 and was diagnosed at 31. It is possible to have sex again! Not recommended unt you get treatment and get your symptoms under control. Having sex while you have a flare of symptoms will only make things worse. Once things are better use a good lube. I just tried cocunut oil as a lube, AMAZING!
Treatment asap is important. Good luck. And definatatly watch Dr Goldstein.
Shari
Yes, it is possible to have intercourse again. It is understandable how you feel about too. It would be good for you to see a gynacologist regarding this, as they can help. Sometimes the vagina tightens up when the skin tightens up and they can help with this.
Your boyfriend will need to go gently when you do try for thed first time, as it may be painful and if it is, be prepared to stop, there are other ways to satisfy his needs.
There is a discussion on here about Vit B, Vit E and Zinc. You should have a look, as it could be the answer to both you and your boyfriend's prayers. Don't give up. You may have to wait until your skin is not so sore before you try again, but many of LS sufferers do have intercourse without pain at least some of the time.
Thank you for your detailed reply friend. I have tried the link you suggested but unfortunately I keep getting an error message when I try to play the video. Thank you though. I am going to try my doctors again on Monday to try and get someone to listen to me
Hi Morrell--Just wanted to say that I really appreciate your reply here! Very thorough, clear, and great overview. --Suzanne
Hi g3--I just had a diagnosis recently and am experiencing much of what you share. It can feel discouraging. There's lots of support and information here. I also have autoimmune issues, including hypothyroidism. I believe that there are genes (HLA-DQ2 and HLA-DQ8, for example) that are often associated with autoimmunity. And then of course we need certain envionmental triggers interacting with these genes to bring this on (i.e., epigenetics), such as stress, traumas/irritants to the tissues, inflammatory foods, etc. being possible contributors. A lot of what this forum does is explore ways to stop these changes, both with lowering inflammation with a steroid cream, and with natural and practical steps to take to lower the inflammation inside and outside of our bodes. While I like natural approaches and choose this approach overall in my life to slow the expression of a number of autoimmune disorders that I have (including celiac disease), I also realize that LS can create permanent changes that I personally would like to slow down. So I've begun the steroid cream (clobetasol) and I hope to stave off more of these changes while also addressing the likely causes in other ways in my life (e.g., stress, barrier disruption that Heather mentions in her posts like urine irritation, eating as close to natural as possible with whole/unprocessed foods, moisturizing, etc.). There's a lot of good suggestions here, so have a look and ask anything you need--everyone is very responsive! --Suzanne
Sounds like LS to me! I find antibiotics aggravate things, as does canestan cream. It might be a good idea to find a good dermatologist, who can confirm whether or not you have this disease. Don't use perfumed soap or shower gel. Use plenty of moisturiser where it itches and I wish you good luck.
It still works for me. I'm no good with computer glitches.
Anyway, I posted a new discussion with the main points from the lecture.
https://patient.info/forums/discuss/news-how-to-use-the-corticosteroid-cream-ointment-271601
just wanted to update folks. I went to docs today and she confirmed I have LS. I am waiting to see a dermatologist and have been given dermavate steroid cream. I want to thank everyone for their advice and information I recieved over past couple of days. Thank you ladies 
So glad to hear you're in good hands! I saw my gynae today and took with me two pages of points we've discovered between us on thi forum. She was impressed. I also asked her whether she has enough patients to get a face-to-face support group together. She and her partner have about 1000 LS patients and she's sure there are lots of undiagnosed women in her large rural catchment area.
Hey Morrell that's great! You know I've been thinking about the lack of awareness of this illness and thought about writing to a woman's weekly magazine
That would be great to get the word out to women's magazines. Sorry to hear that you've joined the club, but I hope that your LS is improving soon. Thanks for the update and let us know how you continue to do.--Suzanne
Not so rare a disease as I was originally told. ("LS is a rare skin disease"
Your doctor, Morrell, has about 1000 LS patients. Dr. Goldstein had 1200 patients with LS. Would all of us ask our doctors how many LS patients they have, I wonder what the outcome would be.
By the way, my doctor did not volunteer to give me this kind of info, and why would he. Is a doctor actually allowed to give out this info? A while back I was preparing myself to lead a support group locally. But I was not given much hope that I would succeed. And thus I did not find any local LS patients. There is no way of knowing who they are. Or is there? Any suggestions anyone?
Hi Hanny, I suppose not many women would willingly admit to strangers that the had this disease, due to embarrassment, etc. I think that we on here are the tip of the iceberg. I think more publicity and knowledge of the condition within the medical profession and among women especially, but also men, as they can suffer with it too, is needed, but I have no idea how we go about this.