i All- I am newly diagnosed with LS a week ago and have been voraciously reading everything I can on it. My doctor is away for the next 6 weeks and left ( nurse called to tell me diagnosis over the phone! ) with no prescription, no treatment discussion and I feel like I am on my own to handle this! It is so nice to know that I am not alone! I am 47 yrs. old, still get my period every 28 days and everything was fine up until 3 months ago. I have had a lot pain after urination, skin very irritated- chalked it up to the middle- aged “ squirts” we women get after three kids and lifting heavy things, excess coughing or sneezing and just thought it was something I had to “ put up with”. My clitoris has been hyper- sensitive, swollen and irritated, so I bought panties with no seams because they touched in just the wrong place. After we had sex in late March ( no pain during except in clitoris during oral- sorry for being so descriptive), I had terrible burning pain for the next two weeks, coupled with my period, everything just felt raw. After a few weeks it seemed to calm down and after mentioning to my husband that I was a lttle dry, and needed more forplay, we had sex again. No pain during, but I could not come and had terrible burning and pain again for weeks afterward. Made appt. with Gyno and she said it looked like Herpes and asked if hubby had a cold during oral sex? Her cotton tipped swabs hurt like hell! Tested for everything including Herpes, Syphilis, etc. all negative. I’m not in the habit of looking “ down there”- raised strict Catholic, husband my only partner, I had to see “ what was going on down there”. Used a hand mirror and saw that interior Vulva was all white, several ulcerated “ lesions”, clitoris was swollen 2-3 times its size and looked split, bump down near vaginal opening, lesion on perenium- what a mess! Thought maybe I was allergic to scented tampons, so I bought organic corton tampons and panty liners. Seemed to calm down a bit and I was feeling hopeful. Got period again and was so inflamed and dry I couldn’t use the tampons! Burned like gasoline when I peed and pain made me want to throw up! Went back to Gyno for a follow up and she said it was worse than before! Might be vulvular cancer- Scheduled biopsy for the NEXT DAY- now I’m freaking out! Took 6 biopsy samples, vulva like swiss cheese, so painful! Results came back 6 days later and I’ve been on my own since. Nothing from my Dr. So you guys are my source of info! I ordered emuaid cream after reading about it and it has helped with itching and pain, also statted on a low oxylate doet that is supposed to help. I noticed the pain was worse after wheat bread, peanut butter, lemonade, etc. I have been using a moisture barrier control ( soothe and cool) after every trip to the bathroom and that seems to help. Still in terrible pain in clitoral area. Am worried about all the things I have read about steroid creams thinning the skin so much and leading to more tears, etc. Your thoughts? Also ordered another homeopathic cream from Perrins, I ‘m desperate and will try anything! Next Dr. appt July 24!!! Is my sex life gone for good? Any thoughts/ info/ comments appreciated.
Hi Karen, So sorry for all you are going through. This is a great site and am so glad to know I'm not alone, but we are alone as far as determining what course of action to take. Everyone seems to be trying a lot of the advice on this forum and seeing what works best for them. Great advice though. Doctors really don't know what to do with this strange skin condition. I'm using castor oil to stay moist, but I still get horrid itches and then resort to Clobestol sparingly. I'm also trying acupuncture (my last session tomrrow) and taking some herbal pills. I'm not seeing any real improvement, but I'm trying everything humanly possible. I'm 72 and think I lost my boyfriend last year because sex was pretty much impossible. I hope your husband continues to be patient. Right now my landscape down there is not looking good, scarring and white patches. I'm at a loss right know as to what to try next. But we do have to pay attention because things can change rapidly. This is not catching but can be hereditary. Good luck!
Hi Karen
The best advice I can offer is to start taking vitamin D3 I take one tablet a day and that seems to help a lot with keeping the itchiness down. Also try taking a baking soda bath. Use about a fourth cup of baking soda in warm water making sure that the baking soda is dissolved before getting in and sitting it there for about 15 to 30 minutes, if you can move the water around so that you affected area gets saturated by it. When you get out pat the area dry don't rub it. And make sure that you get all the access water. I found that with me if I leave it damp I feel like there is more friction and it causes more of that burning.
I hope this helps!!!
I feel your pain it sounds like the same symptoms I have had. Why not call the Dr office. She probably has a partner or someone to cover for her. They can prescribe a steroid cream to make you feel so much better. (Expensive but worth it) You have been diagnosed and should not have to live with this pain. Med is called Clob on this forum.
Hi Karen, Reading stuff posted by women with LS on this site should help you if you go look at some of the many old threads.
Right now though you need the steroid cream to enable you to get some relief, I am surprised that you were not given any as it sounds like your in a horrible flare up. The steroid cream is really the only thing that will help restore your clitoris back to how it was and you need it like yesterday! Ring up and demand it.
Once you have it you will need to use it twice a day on your clit until you start to notice a lessening of symtpoms, then use it once a day, then alternate days and so on. I'm guessing after about a month you should be a lot better and you then can make the decision on whether to use the steroid cream weekly for maintenace...not everyone does that, its a personal choice. The white plaques should hopefully disapear as well. The steroid cream is the thing to use for problems with the clitoris and the white plaques of skin.
For the lesions/cuts/sores you describe I would use a different cream, like a babycream, like Desition, as I have found the steroid cream to be too strong for them. It is important to bathe twice a day while you have all this going on and then dry yourself using a hair dryer on a cold setting before apply the two different creams. Try not to wear tight pants/clothes for a while.
Having sex while you are in such discomfort will only make things much worse, and so its best avoided. Try to get hold of a Sitz bath as that makes things easier.
Listen to me. Sit bath every other day with Cetaphil. Cotton panties. No panties at night. Order v-magic until it arrives use pure vitamin E ( puncture a capsule) after every pee. Sqirt a water bottle during pee. This should hold you over comfortably.
Oh my goodness Karen, I am so sorry you've had to go through all that! And as I'm sure you've read, stress doens't help LS 
It's probably the one trigger everyone experiences. You're definitely doing some of the right things, using fragrance free products, get some soft cotton panties, moisturize big time, all of people get triggered by sugar/alcohol, some have an underlying thyroid issue. I started a thread 2 years ago titled An Experiment with Borax and have had tremendous success, as have so many others. Go and have a read, but I would suggest waiting until things have calmed in the area before trying the treatment. Regardless, read as much as you can on this site, I feel like this is where you'll find some solid information as you're reading the experiences of hundreds of women/men that are suffering and coping with this awful disease.
Hi Karen
I feel your pain as does everyone on this site. You are not alone! I wish I found this community initially but it took me 3 years.
First - find a different doctor!!! Or get the office to get in touch with the doc and get a prescription ASAP!!!
Your condition is very very serious!!!! You should have a prescription for Clobatasol yesterday! I know this first hand - I wasn't using the clobatasol, was under a crazy amount of stress, and my LS got so bad. I finally got to the specialist and he said "I wish you found me sooner". I had biopsies taken - and the results were "fortunately" pre-cancer. Two weeks ago I had a partial (about 50%) laser vulvectomy. Talk about a mind f#*k. And do not look up vulva cancer or look at the photos on line because it will not help. If you can find a vulva specialist that would be very helpful.. and depending on your biopsy you may need to. A lot of basic gyno's don't know much about LS. that was the problem I had - one doc diagnosed it, then I moved and the next doc didn't know much about it but renewed my prescription. Then I moved again to near a big city and was able to find a specialist. I had a serious flare up kinda like yours and it took another month to get into the vulva specialist. A month is a LOOOOOONG time when dealing with something so serious and painful.
Origin - there's info out there that say it could be genetic. My mom has vitiligo and it has been related to that. another post on this site mentioned a connection to sexual abuse - which would fit me also. The metaphysical is very real to me. I did see a medical intuitive to help clear past abuse, curses, and other stuff. Kinda wuwu, but at this point I'm up to trying just about anything. I've definitely looked deep into my own stuff and realized I've got to love myself and my vulva and take care of me. It's actually been a very therapeutic empowering process.
Peeing- Have a little spray bottle with a mix of saline solution, baking soda, hydrogen peroxide next to the toilet and after you pee spray yourself.
Steroid Clobatasol - $80 for a little tube and worth it. It is the only thing that will definitely keep the LS in check. I made the mistake of not using it regularly. According to my vulva specialist it has to be used at the very least 1x per week. I agree with one of the replies here - at this point given your flare up 2x per day for awhile then you can reduce. Supposedly when the steroid ointment is used in the vulva area it doesn't have the same side affects as other areas.
Shower 2x a day - yes! A very gentle creamy natural cleanser works best for me. some cleansers will burn to tears.
Sitz bath - yes. epson salt, baking soda mix
I've used a frozen gel pack for relief from the heat.
Laundry - be conscious about what you use for detergent - borax, and a sensitive skin detergent. Do NOT use dryer cloths - they have fiberglass in them.
Skirts and no panties helps A LOT.
My specialist told me those sores that your doc thought were herpes are a sort of vaginal canker sore - like the ones you get in your mouth if you eat too much acid. Those things hurt sooooooooooo bad! My guess is that the LS gives those vaginal canker sores an opportunity to exist. I'll be thinking about it though to see if there're relation to something I've eaten or stress or something I wear or... ???
I don't think I'll ever ride a bike again. That's how this flare up started. Sex does not help and can hurt and even make it worse.
Food - from my research here on this site - Sugar is the worse, then dairy.
Topicals - emu oil, aquaphor, and coconut oil have been mentioned mostly but only as a relief.
After my intense flare up I followed the 2x a day with clobatasol, post the morning and night time showers. I have a magnifying mirror I'd check myself out in each time. I sprayed with my mix after peeing, did a sit bath a couple times a week - I would have done more but I don't have a tub and I got a kiddie pool from Target and sat in that. 
. I don't eat candy, or drink wine or alcohol. I eat very paleo-ish - no carbs because carbs are sugar.
Sunshine - so this may seem kinda too hippy for some - but I sun my flower! yup - sit outside with my coffee and take 15 minutes to let the sunshine in. I think it helps. Along the lines of red light therapy.
My next step is to try hormone therapy, appointment on July 5. Perhaps an imbalance is part of the issue.
O-shot: I decided against the O-shot - which is using your own plasma, spun, and then shot back into your vulva. I can see how it could work given the growing use of this treatment on other body parts, including face. But my research on the O-shot specifically shed some weird light on the inventor that I don't feel good about. Though I will be looking into other options in the plasma world.
As for my vulvectomy - my flower is healing well. Dr appointment next week. Sure it wasn't fun, but at least it was just laser surgery and not more. I'm not sure if the LS will flare up in the burned off areas. My poor little clitoris - but at least I still have one!
It's gonna take diligent effort holistically to get through this. And yes, it's a bummer - but you have to take care of yourself now big time!!!! Don't worry about down the road just take it day by day. Continue to check in with this group to see if you can find some good advice that resonates with your style. But don't over do it - it can be just too much. Reduce your stress, and live your life. This isn't who you are, it's just an opportunity to take care of you! You are on a healing path for most likely more than just the physical. in good health!
I have two daughters, 19 and 22 and they hv never seen me like this- in so much pain! I hope for their sake it is NOT hereditary. Husband and I have been together since I was 16, dated 6 years, been married 25, only sexual partner and I don’t want our sex life to end! I just hv to get this under control, good luck to you as we navigate this path.
Thank you for your advice! I hv found some relief with the baking soda bath- of course the article says 15 min 3-4 x a day, I work 4 jobs, who can bathe 4 x a day! I will continue taking my Vitamin D3- started supplements since taking Nexium for Reflux weakens your bones. If it helps the itch I will surely continue! Thanks!
Hi Martha- Stubborn me had to leave on my vacation right after diagnosis ( non - refundable plane tix), so I am no where near my Dr. Office. I am wary of the steroid creams as many people hv posted that it thins their skin ( discolor I cpuld care less about) and it tears more easily. The Eumaid homeopathic has been helping ( DAY 5) and I’m hoping to continue this route. Has anyone tried the homeopathic creams with success ( Eumaid and Perrins?)
Hi Guppy! Thx for your reply. With regard to these sterpid cream wveryone is talking about- do you wear something on your finger to protect the skin on it? They say to only put it on the sores, not healthy skin- I hv been doing it by feel, not really looking at that mess. At this point I only have the Eumaid and a Moisture Barrier Control to use- good news is I went a full day with little to no pain upon peeing! Any thoughts on the low- oxylate diet? And avoiding sugar? Did you try these, did they help?
Thank you Ellen! I had bought seamless panties, but wrong material, some kind of strtchy synthetic! Went back to my white cotton granny pants even though they hv that annoying seam right across my clit! Stupid thing must have been designed by a man! Will try Vitamin E, thx!
Thank you! It helps to know I am not suffering alone and I appreciate all of the advice!
Wow! Thank you for all of that good information! I read several medical journal articles about the use of Platelet Plasma Rich injections and the use of Focused Ultrasound, all sounds so hit or miss! So you teally think I should call my Dr office and demand a script for Clobatasol? I was trying to heal it homeopathically with the Emumaid and moisture barrier ( Vit A, D , E) cream. I am 2000 miles away from home, on vacation ( non- refundable plane tix) and will be gone a month. I am teying to use this time to relax, de- stress and focus on me! Got the cotton panties, and hv been wearing alot of skirts, dresses. I drink very dry red wines ( my only crutch on vacation, and only two glasses- not everyday) , but hv given up carbs, sugar and eating low- oxylate foods to see if it helps? I so appreciate everyone taking their time to share their experiences and knowledge! And I am outside soaking up the sunshine and practicing meditation/ relaxation to lower my stress while here.
Hanes has an all cotton bikini with no seam. Fyi
Wonderful post! just great!..I enjoyed reading it! 
Hi Karen, you only need to wash your hands after using the cream but it is worth using a hand mirror to apply the cream otherwise you end up with it everywhere.
just read that you're on holiday and drinking red wine. I feel horrible saying this especially as you are on vacation but I think you need to stop the red wine for a few days. Red wine is like poison for me, it contains sulfites, salicylates and histamine. Now, I know I am probably an exception to the rule, being super sensitive (I have MCS with multiple food intolerances) but I know that many other women have reported on this site from having flare-ups after drinking wine. Can you drink something else like vodka or gin as they are purer I think!!
Strange as it may seem the red wine could be aggravating everything. Why not cut it out for a few days and see what happens.
Omg! I certainly will cut out the red wine! I thought it was okay since they are very dry reds and hv very little residual sugar. I am downing about a gallon water a day to make my pee less acidic, so will just rely on that for now. Thanks for the heads- up!
Thank you Ellen! Why that seam is right THERE, I will never understand! Looking on Amazon gir Hanes no seams cotton panties right now! 😁