New member... chronic vulva symptoms and fed up with no relief :(

I am 23 years old and for over 3 years now have had chronic itching/burning of the vulva and surrounding areas and really am at the end of my tether

It started very suddenly one day where the vulva area swelled up and burned like hell, very suddenly. I ignored it and took thrush medication just in case, didn't go to a doctor.  Ever since that day I have had chronic symptoms.

I have been to about a million GPs, 6 different Gynecologists, a physiotherapist and a vulva dermatologist, I am lucky I live close to London so have a big choice of very highly rated people who have all really tried to help but despite this I still haven't been able to get a firm diagnosis or any relief.  The only diagnosis I have had is Lichen Simplex Chronicus, which is  itch/scratch cycle and leathering of skin.  I have since managed to get the leathering and thickness down with the use of steroid cream but despite this I have had no relief from the itching or the burning, the steroid cream does not help me at all. The itching and burning extends to the anal region too,  but is worse at the vulva.  I feel like something is CAUSING the Lichen Simplex but nobody has any idea what it is (nor do I).  It never goes away. Worst of all perhaps is the burning when I urinate, sometimes it feels like the urine is burning me and other times it feels like the urine against irritated skin is what burns me, and it even burns before anything comes out, you know that 5 seconds after you've let go to wee before anything comes out *ow*.  I have been testing my ph with sticks and it seems fine, I've made an effort to be more alkaline but even when my urine is alkaline it still burns. Sometimes I get dragging pains in my groin area.  I have been tested for yeast a million times, all negative.  I have had skin biopsies and all they came back with was 'chronic irritation.' I could have told them that before they did it...

I have been on Gabapentin (Neurotin) and this provided no relief. Anti-histamines reduce the symptoms by about 10% I'd say.  

I just want relief! I want a day in my life where I have no symptoms.  I feel like I am heading towards a depression.

Does anyone have any advice?

Thanks

Have you had any allergy testing done?

Hi Lesleig, yes, I have had a food allergy blood test and a skin prick test for common air allergens too. Nothing showed up.

I do have allergies as I also have problems with post nasal drip but so far have been unsuccessful in linking it to my condition.

I asked about allergy testing because I had the North American Allergy Patch Series test done and they found that I had a significant reaction to a chemical that was in both my body soap and my shampoo. (The test is 4 days long).  I was using these products  for 5 years.  This allergy test tests for chemical allergens.  The chemical that I reacted to is ironically in most soaps that are made for "sensitive" skin and baby soaps.  It's in Dove sensitive skin soap. I switched to aveeno oatmeal and things got worse.....I'm now using vanicreme bar soap (my derm specialist recommended it) and free and clear shampoo).  They are no fun but a small sacrifice in the big picture.   I never imagined I would have an allergy because I thought I ruled that out years ago.  Apparently it takes weeks-months for healing of V skin and gentle care.  I do find my skin to be less inflamed and symptoms a bit less but I think I'm left with muscle/nerve V now in aftermath of chronic exposure to allergen.  I try to use very little soap in that area now and only externally with lots of water.  I'm in PT now early stages with fingers crossed.  
Best Wishes.....xo

Hi bananacake, I have quite a few similarities to you! Similar age and also live near London. I have had it...let me think..4 years this month! Bloody hell. It started about this time of year after a urine infection. I had never had sex when it began.
I haven't been to as many people as you yet but I'm already fed up! You poor thing you must be so sick of doctors. I've been to the gum clinic about 8 times thinking it was some std that kept being undetected! I've seen 2 gps and one gyno.

Was also on Gabapentin and found no relief.

I have also started to get itchy around the inner labia and the perineum. My main symptoms a bit different to yours it's a fiery sore burning around the vaginal opening and at the glands just inside. I sometimes feel sore around the vestibule and urethra although the pain/irritation of that is nowhere near as bad as inside my vagina. Also randomly looks a bit red and inflamed due to no trigger that I am aware of!

I also get burning urine despite the sticks showing it as healthy, like you said! It feels like it really burns the skin extra. Drinking more water and drinking cranberry juice is good although hasn't reduced the burning. I wish I had something to suggest for you but I'm in the same boat! The only thing that provides a little temporary relief is Xylocaine lidocaine spray which numbs.

Also, Leslie - that is really interesting! How do you go about getting an allergy test as I wonder if something could be worsening my symptoms

Thanks for your replies

Lesleig - that allergy testing that you had done - was this done in a clinic? I wonder if I can get something done like that here in the UK...

I don't wash with anything other than E45 bath oil, I just put a bit of that in the bath, it helps the skin a lot but doesn't help my symptoms, if that makes sense.  It says it is allergy screened but I could well be allergic to something in it.  I've tried changing my washing powder lots of times, and wore brand new knickers every day for 2 weeks to see if that helped. Nothing really seems to work :(I'd love to get some proper allergy testing done...

Tinkerbell, I too get that fiery feeling around the vestibule and urethra!! It's horrid isn't it :(Mine varies in severity, there are days when it's really bad  and other days where it's bearable to good, but it's never completely fine. When it's really bad, if I were to lean forward on my chair I almost jump up with the pain on the urethra, it feels like you have a UTI but you don't have one... so frustrating...   You get pain inside too? I don't so much, though sometimes I feel like the pain radiates to the inside when the outside is bad, so sex is often a no no on both counts when it's like that.   I feel like any pressure on the area sets off my inflammation, however minor, though like you I often get flare ups for no apparent reason. I can find no patterns to my symptoms at all.

I do find if I drink a gallon of water and the pee is clear it hurts me a bit less, though that doesn't make sense to me as the ph seems fine.  I am actually seeing a Urologist very soon for the first time, I had to convince my GP to refer me, we both don't think I will find answers from it but I just want to rule anything urinary out because from a Gynecologists point of view they can't find anything other than skin problems, so I have to go down a different path.   I have had a kidney function blood test and my pee tested for basic stuff like infection, both fine, but I would like some more rigorous investigation just in case. If nothing comes from this then I'm kind of stuck again!

Best of luck to you both too x

Hello!  I've been going to a vulvovaginal specialist clinic near Boston, MA.  It's Dr. Elizabeth Stewart's clinic.  (she's supposed to be one of the experts on this condition here in the US.)  I've only seen her once back at the very start and have since seen her Nurse Practitioner's.  My only prescription until recently had been varied strengths of topical steroid ointments and lidocaine.  I've been surviving on lidocaine for years because I didn't feel the ointments were doing much at all.  

A while back I tried using topical pure aloe vera gel to try to limit the excessive amounts of lidocaine I was using.  This seemed to work great for a bit....then I started to get strange itchy bumps and a tiny sore which freaked me out.  (i thought it was progression of lichen planus which I now know I do not have).  However these bumps prompted a referral to the vulvar dermatologist  within the clinic (Dr. lynette margesson). I have seen her twice now.  She made the recommendation for the allergy testing.  I don't know if its available in the UK.  However I do think its done throughout the world because there was a Dr. from Denmark with my doctors at my last visit. She apparently ran a vulvar clinic there and was observing things here in the states.  She seemed familiar with the testing.  Here, it's called the North American Series Allergy Patch Test.   It may have a different name there.  
By the way, I stopped using the aloe and the bumps healed and never came back (fingers crossed).  The strange thing is that I was using the aloe for a few months with no issues before the bumps appeared.

There is another member here who had similar allergy testing.  I believe she is from the UK.  Her member name is Elc88.

She found she was sensitive to an ingredient in some of the prescribed medication she was applying and sensitive to nickel.  

It's worth a shot to ask your doctor.  It includes testing reactions to fragrance and clothing dyes as well.  

It hasn't been my cure but it's a piece of the puzzle.....

Wishing us all luck and healing  xo

I get what you mean about the pain radiating - mine started just inside now seems to have radiated to the vestibule and labia. All I know is something isn't effing right down there and it feels so sore and I want to cut my vagina off !!!! Lol. It's frustrating and the stuck isolated feeling of no one being able to help is scary. But many women have had it go away so there must be someone. I cant see any pattern to it at all. Drinking more water is always good for overall health but even that seems like so much effort. I prefer tea! Lol. But i think it does help reduce my burning a tad..I just think, if we've had painless vulvas/vaginas/fannies what ever you wanna call them in the past, we can get them back again! Best of luck to you and leslieg. Keep trying and searching x