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?

You could try olive leaf extract? It might help and won't do you any harm. It's a natural anti-viral.

God it sounds horrific.

Sorry no advice just solidarity!

Have you tried the probiotic pessary that you insert inside your vagina?

I have had persistent thrush all my life and have recently cleared it for good with Canesflor vaginal probiotics. The pack costs about £15 and you insert a pill in your vagina for 7 days and after that use as and when needed (pop one in after sex for example).

If you've not tried vaginal probiotics, it's worth a try. I didn't think anything would work for me and only wish I'd found out about this product sooner.

Do you use fabric conditioner?

Allergy to it tends to flare when wetness on skin as wet sort of "reactivates" it? Steroids tend not to help

As someone already said, maybe it could be pinworms, in which case your partner would be constantly reinfecting you as it's so contagious. If you haven't already it's really worth both of you trying Ovex from the chemist, plus putting all your bedding and towels in a hot wash. I think the life cycle is 2 months which would explain the good spells.

What are your knickers made of? If they're anything other than 100% cotton you might want to consider switching.

Seems to me that it could be some kind of reaction to heat. Spend an hour whenever you can just lying down with no knickers on and air it out. Would you get the same reaction from using cold products down there? Hope you find a solution soon!

Have you changed your type of underwear? I found certain material made me sore down there.

Also I advise to check both you and partner for worms.

Sounds horrendous OP. Nothing to offer but sympathy.

@autumnalramblings it was a two week course of doxycycline

Allergy to sperm or condoms maybe?

Do you use condoms, by any chance?

The reason I ask is that for a period of time I suffered with soreness, stress incontinence, and such terrible itching that I was prepared to sit on a cactus. It turned out that I was reacting to condoms, and to a lesser extent to certain brands of sanitary towels.

Could it be uti symptoms?

Do you sleep naked? I had something similar a while back. Daily anti-histamines, swapping all my bedding for hypoallergenic ones plus washing them frequently managed to get it under control. I have to do all three though, any one alone isn't enough.

Ask if you can have an allergy test where they test for all the most common allergies. It's a simple blood test but it can take a few weeks to come back.

Turns out I'm allergic to cats, dogs, dust mites, pollen, grass, and a few other things. It all started suddenly in my mid twenties. Never had any allergy issues before that.

@brummiesue what's VIN? I googled but just getting stuff about cars coming up

Just ordered some probiotic pessaries and Ovex. If it IS worms, would i not have any symptoms in my back passage like itching aswell?

I do sleep naked, my underwear is 100% cotton and i don't use fabric softner on my underwear,pads or towels.

Don't use condoms

Definitely not UTI symptoms - I've had enough of them to know the symptoms!

I was thinking about having an allergy test but then I watched some programme that said they are unreliable and some are just plain rubbish - anyone have any recommendations?

@autumnalramblings VIN is vulval intreapithelial neoplasia - the start of vulval cancer. Its symptoms are similar to what you describe. You need a referral to gynae and a biopsy to rule it out x

Are you otherwise well? Any joint, eye troubles?

Google Cytolytic Vaginosis. It's an excess of lactobacillus bacteria inside the vagina. Afaik it's not routinely tested for. DIY litmus papers don't necessarily rule it out.

Also, a possibly simple solution - Have you tried using thrush CREAM (clotrimazole) around your vagina and vulva? I had vulval burning, itching and stinging (at times it felt like acid) for over a year. Pills and pessaries didn't help, but the cream got rid of it within a week or so.

@brummiesue I've seen many gynae's and none of them have mentioned this they just shrug and give me different creams/potions to try - none of which have worked

@IveGotBillsTheyreMultiplying yes otherwise well

@Miiaaow I've tried every thrush cream/pill treatment going! I've tried the external cream, the internal cream, the pessary that gets everything messy, the gel pessary and also gyno daktarin aswell as fluconazole. My GP actually put me on a months worth of fluconazole and cream to see if that would make a difference but nope

I've been on 2 different types of BV treatment aswell the internal pessaries and the god awful antibiotics.

I can't understand why no gynae has come across this before it's really frustrating!

I've had similar when my blood sugar is badly controlled (diabetic). Vagisil wipes work miracles for me.

Is the redness/soreness down to scratching or is it one of the symptoms?

How old are you knickers? Throw away and rebuy. This was an issue for me with a gyne problem. Wishing you luck with finding answers!

Have you tried linking it to what you eat? Your symptoms are a common complaint for women who are sensitive to oxalates in their diet. Try cutting out all oxalates for a week or two. There's a very helpful Facebook group called Trying Low Oxalates.... join it and search vagina and it will give lots of info.

I had this and I tried everything like you, including taking some foul tasting natural remedies I think one was oregano. Honestly the only thing that helped was ensuring I only wear 100% cotton undies, cotton trousers / skirts, watch out for polyester linings. Tights also tricky but would basically cut a big hole in the crutch and nothing too tight, no pencil skirts only A line Tight hole was hard one to explain to new men when dating I found this helped, but mainly I think it was thrush and stress related. I know this sounds crazy, but I was in a very unhappy relationship and when I finally got rid of him, it eased and then stopped after years of suffering. So maybe it was an allergy to him, or he was reinfecting me with thrush, but I do think it was thrush even if I tested negative every time. I remember it started after getting that thrush feeling , set off from using Veet on my under carriage oops.

I think men can take the thrush tablet .. do check but maybe worth him taking it and treating himself.

Having thought back I also used Replens for a while once single again. I didn't need it long term but it's weird and amazing. Something was unbalanced up there and affecting the outside. So destress, natural fibres and the replens. Good luck

I know you’ve said it isn’t vulvodynia, but it could be worth trying one of the antidepressants that are used to treat it. If they don’t work then you can stop them. Your GP should be able to prescribe them for you.