to ask what you think could be wrong with me?? (TMI alert)

[autumnalramblings]

I'm late 30's and for the past 2 years I've been suffering with pain, soreness and itching in my vagina.

sometimes its more sore than itchy and sometimes it's just itchy.

It ALWAYS subsides/disappears during the heaviest part of my period. as soon as the light flow/spotting days are here the soreness returns.

I've seen 7 gynaecologists and a pelvic pain specialist aswell as several trips to the GUM clinic.

so far I've been tested for thrush, BV, strep, all STD's etc and also paid for a private STD test as they apparently test for things the nhs don't routinely test for but everything was negative.

I've been in the same relationship for 7 years and partner has also been tested for all stds.

even though it always comes back negative for thrush and bv I've been treated for both just incase about 6 times!

i was given estrogen cream as everything including labia was so red and sore but that did nothing, i used it for 6 months.

used a vaginal moisturiser for several months and no difference

i was prescribed steroid creams but didn't do anything, it's not dermatitis or lichen sclerosis.

I've tried changing my washing powder to a really gentle non bio and wash underwear and towels on a hot wash

i don't use shower gel or soap down there. don't douche, don't use tampons, i use re usable sanitary pads, natural non bleached non scented toilet paper. don't take baths, don't get sweaty and if i do i change asap but that doesn't present an issue this time of year.

I've tried anti histamines.

i have taken pre/pro biotics including ones specifically targeted for the vagina

I've used litmus paper to check the acidity inside and outside and it's always in normal range

I've had internal scans, ultrasounds, MRI and all normal

the itching is usually worse just after a shower or just after having a wee so in both cases after it's wet.

soreness is always there but it did disappear for a few months but now it's back and kicked off after sex and has been sore/burning ever since.

I've also had my hormone levels checked and I'm not pre-menopausal. I'm not on any contraception and don't use condoms.

apparently it's not vulvodynia either.

does anyone have any other ideas what it could be?

Have you tried altering your diet? I get very itchy all around my vagina and bottom when I eat gluten.

A couple of days gluten free and the itching and discomfort goes.

I am gluten free for other health reasons; I hadn’t ever linked my itchiness to gluten until I tried not eating it.

Keep it be sensitivity to your partner's ejaculate?? Have you tried condoms to see?
Just throwing out ideas.

yes sorry i forgot to mention i changed my diet eliminated dairy, wheat, gluten, sugar and whatever else i ate on a regular basis but made no difference

I wonder if you could try a menstrual cup instead of reusable sanitary pads? No idea, just a suggestion. Looks like you’ve covered most bases! Fingers crossed you get to the bottom of it OP.

And get food intolerance tested. Sorry your suffering. And see if you get allergy tested with the prick test

Worms?

Vulvovaginitis? Really unlikely to help considering everything you have already tried I know, but have you tried a barrier of something like Vaseline or nipple cream?

Have you had your blood sugars tested? It could be a sign of diabetes

Lichen sclerosis?

Have you tried eliminating caffeine?

Vulvodynia is a diagnosis of exclusion, i.e. it describes vulval pain for which there's no identifiable cause. So I am wondering why it is not vulvodynia.

yep tried eliminating all caffeine

have tried sudocrem, nappisan, dermovate and some other form of barrier cream

apparently it's not vulvodynia because those vaginas apparently "look" normal but present with pain whereas mine looks red and raw.

Have you tried natural yogurt? It’s very soothing and should help with the itchiness

I know naff-all but wonder if it could be some kind of water urticaria? When you've got your periods you may be using sanpro that reduces the general wetness of the area?

Have you taken Ovex /worm tablets?
It may be worth it just to rule worms out.

Hi op, I had surgery years ago where I was in a sling for 6 weeks that I was mot allowed to take off, wasn't allowed showers or anything. The skin on my arm got so dry that when the sling was removed it was full of dead skin. Anyway it was really really irritated and I started moisturizing but it made it so much worse like I felt the itch on my nerves. I was crying as if I was in pain but it was definitely itchy.
It began happening after a shower too. I used to scream after the shower. Felt like the water was seeping into my nerves. I did some digging and found what I think it was
Aquagenic pruritus I think it's called
Some people have lived with it for years and then it suddenly goes.

I used a deep moisturizer like silcocks base and kept washing the area even though it was torture. Luckily mine went after a month but Jesus I was close to throwing myself under a bus.

I hope you find out what it is.

I think you are allergic to your husband maybe?

thanks for all your responses. can an allergy to sperm just suddenly appear? we didn't have sex for 3 months and the pain/soreness never went and then one month randomly disappeared so we were able to have sex again for ages with no probem and then it all kicked off again

Just checking you don't use condoms? As a latex allergy can cause similar problems. I'm guessing you don't.

Ask to be tested for ureaplasma. It is a natural bacteria in the vagina but sometime you can get an overgrowth which causes itching. I grew this after years of general itching and generally feeling uncomfortable. Some doctors don't think it needs to be treated but I definitely noticed a difference after treatment. Two weeks of antibiotics cleared it up and no itching since ! I also had it in my urine/bladder as well.

Could it possibly be a form of eczema? There is hundreds of types and they don't all look like the raw dry skin everyone views eczema as

nameisnotimportant - what antibiotics did you take? im pretty sure ureaplasma was one of the private tests i did but I'll check

imnotaslimjim - one of the gynaes thought maybe it could be so i tried 5 different steroid creams bur made no difference

As others have mentioned, blood sugar needs checking as well as iron and B12. It may not be diabetes, but insulin resistance (pre-diabetes) causing symptoms. I have a latex allergy and if in contact with any elasticated garments, I will happily shred my skin off with the itch and rash. Go to bed underwear-free to let your skin get some air. Try various lotions and potions like sudocrem, or baby oil unscented...its like a personal experiment finding a cure. I use olive oil on my psoriasis and it is heaven, if sticky. Last time I had a skin flare down there, I sat in salt baths every day for 10 days...sure it stung, but it certainly dampened the fire too.

Have you had a biopsy? VIN maybe?