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?

@autumnalramblings have you actually had a biopsy?

Have you had a baby? Even if a couple of years ago when this kicked off? I had terrible thrush through the late stage of my pregnancy and for a WHOLE YEAR post partum. Every thrush test came back negative. In the end giving up breastfeeding and waiting another 4 months for the hormones to regulate cleared it.

I hope you manage to get it sorted, sounds awful x

@brummiesue no i havent - can you actually request it?

@Sosocold nope never been pregnant.

I too am wondering why vulvadynia was excluded? I have it and it's horrible. Usually when all other things have been excluded they then say you have vulvadynia.

@Loulou - they said it's because generally people with vulvodynia don't have red raw vaginas - they tend to look "normal" on the outside but have burning and stinging and pain sensations. No idea, not a doctor but every gynae I saw ruled it out and said something is going on just don't know what.
One gynae actually banned me from coming back to see her as she said she couldn't help me anymore :-(

I was thinking of Behcets syndrome but very, very rare and associated with mouth ulcers, joint pain, eye issues. If you are generally well otherwise it's vanishingly unlikely but I'll put it out there in case it helps someone reading the thread, now or in the future.

Thanks anyway @IveGotBillsTheyreMultiplying, I did just google it but i don't think its that - i dont seem to have any of the other symptoms

Have you tried changing your toilet paper? I get your symptoms if I use anything other than Andrex Gentle.

Have you tried using vagisil powder? I got these symptoms during pregnancy and found vagisil powder worked better than the cream. Even the slightest bit of moisture would set off the itching. I know your not pregnant but its worth a try.

The only other thing that goes near your vag is your partner. Has he been tested for anything other than STD's.
it could be anything from his diet transferring to his sperm (think nut allergy) to what he uses to wash his privates or uses on his hands, face etc.
And the other long shot would be... when did you last change your mattress? Do you have pets?

@MamaBearThius I'll look for that brand, I currently just use a cheap non bleached non scented version

@BNV1 will order some of that thanks

@noego I have been convinced all along its something to do with him but he's been to the doctor who took a look at him down there to make sure it "looks" ok but he couldnt find anything wrong. His GP said there is nothing else to swab for other than STDs which were clear.

If it was his sperm why would it be fine for a few months and then all of a sudden be in pain again? We havent gone near each other since it flared back up again.

OP I have a similar issue and no diagnosis either. The only thing that works for me when I feel it coming on is neat Apple cider vinegar, it's amazing!

My phone is struggling to load all the posts so apologies if someone else has already said this but has lichen sclerosis been ruled out?

My mum has it and took them years to diagnose it and it was misdiagnosed as other things several times.

@sniffingthewax do you put it inside or just use it outside?

@newnameforthis76 yep already ruled out. I don't care what it is at this point I just want a diagnosis so i can treat it!

OP I put it on a cotton ball and literally wipe anywhere (inside and out) to relieve the itch. It is the only thing that works for me.

I had exactly the same as you OP and it took me four years to get diagnosed. The itching was so bad I wanted to take a knife to my vagina.

I have vaginal eczema in reaction to estrogen, which explains the fluctuations with the cycle. I was diagnosed by a dermatologist after a biopsy but it must be analyzed by a specialist dermatologist pathologist (my first biopsy just came back negative for lychen schlerosis but we don’t know what it is). It’s very rare.

Mine went away when I got pregnant, which, I appreciate, is not appropriate for everyone , but perhaps if it is that, a treatment to manage your estrogen levels may provide relief.

Google suggests there is a progesterone hypersensitivity version as well, so worth considering that possibility as well.

@Booboostwo that's very interesting - how did it finally get diagnosed via a swab or something else? What medication do you take/use for this? did yours disappear with your period too?

Washing powder?
Cotton pants..
Different style pants? Maybe the shorts so more material, less chafing?

Yes it would disappear with my period and it disappeared with my first pregnancy, stayed away while I breastfed, got pregnant and breastfed again. It hasn’t come back. Heavy doses of steroid creams kept it in check before I got pregnant.

It was a biopsy which sounds really off-putting but I didn’t feel anything with the local anesthetic. However, it is crucial that the right pathologist looks at the biopsy, it should be a pathologist who specializes in dermatological problems.

This sounds just like lichen as mentioned previously. A good friend of mine had it. Research it and then find a dermatologist. This was who diagnosed my friend, not a gynae.

My DD gets problems if she wears coloured underwear. Took me ages to figure it out. Long shot but worth a try wearing plain white?

Do you have an IUD?

Was your DP in the military in the Middle East?

Desquamative inflammatory vaginitis?

I noticed similar due to hormone changes.

I also find it is better with unbleached toilet paper and cotton or bamboo reusable pads, no perfumed products of any kind, even shampoo.

Was told to use Aqueous cream to wash with.

Pro Gest cream helps a bit, or another natural progesterone cream.

Many years on I still have no solution but the above help, as does avoiding stress.