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?

Also, from reading, and reading, it seems that Oestrogen dominance can be a problem, unfortunately doctors prescribe oestrogen for these problems.

Progesterone is said to balance it and relieve symptoms which is why I used the ProGest cream.

Sounds very similar to me although i didn't have any external actual raw bits. Mine is diagnosed vulvadynia. I got some relief from using lidocaine ointment externally and also from taking amitriptyline as a nerve pain suppressant. I now only take Cefalexin which is an antibiotic which has pretty much cured it. I have to take it every day but totally worth it to get rid of the pain. I used to sleep with an ice pack between my legs when it was really bad. I saw a consultant in London who was brilliant, she was some sort of specialist dermatologist and gyneocologist I think.

Really sorry you've got this, it's awful and so debilitating. Really hope you get it sorted.

You poor thing, it’s miserable isn’t it.

It’s one of the things that keeps me on a very low carb/keto diet. A sniff of sugar (including fruit) impacts my blood sugars and sets Candida off. I know you said you tried cutting sugar out, but for me it means cutting out ANY form of sugar and all carbs turn to sugar once you eat them, so I have to cut out all the obvious sugars, (table sugar, sweets,,syrup,etc) natural ones such as honey & fruit as well as bread, potatoes,rice,pasta and the more hidden ones such as carrots,peas,etc

If I ‘fall off the wagon’ the itching gets me back on it!!

Good luck finding a solution for you 🌷

Oh & mine disappeared with my period too - the relief!

Diabetes/hormones

Have you tried changing your toilet paper.

I get irritation from most of them, even the unbleached, unscented ones.

The only think that consistently works for me is the ‘Who Gives a Crap’ bamboo paper. You can get a free sample box of four rolls from them. Well worth a try.

I also can’t tolerate any of the moist wipes.

@keepingbees i do only wear white (granny!) knickers. I wear black during my period but I use a pad during that time anyway.

@Obligatorync no I don't have an IUD or any form of contraception. Nope DP wasn't in the military.

@soberfabulous thanks I'll ask for a referral to a dermatologist instead of gynae then

Ah ok. If it's not a hormonal issue then I would try and explore the reason it could be better during your period. Could it be something in your normal underwear that wearing a pad is making better, or do you take pain medication during a period etc. It must drive you mad, there must be a reason why it improves. I hope you find out!

@DontCallMeShitley which progesterone cream did you use? There are quite a few out there so don't want to get a rubbish one!

@IncrediblySadToo did yours just randomly appear one day or start gradually?

@SometimesSquircles that's very interesting that cefalexin cured it, I thought vulvodynia was a nerve type problem..

thinking about it more and more, I personally don't think it can be diet related because the fact that I was absolutely fine, had sex, then the next day totally not fine so either its his penis, his sperm or a reaction to sex.
Never had this problem before I met him!

I thought that if it was a reaction to sex then not having sex would make it feel better right? But it doesn't, the only thing that makes it feel better is my period but is that because of the PH or the fact that it's very lubricated during that time or something else?

My brain hurts

Have you tried different material knickers? You might be sensitive to the material, which isn't a problem on the rest of your body as it's not as sensitive as down there.

I have this when I'm on my period, and I know for a fact it's because I'm sensitive to the material of sanitary towels. But tbh I just live with it as I only need to use them for the heaviest two days a month. I should probably get reusable ones really, I think it'd help me a lot!

Silly question but have you tried cleaning your vulva using acqueous cream? I've had nightmare possible thrush/UTI well over a year now. I'm on long term thrush treatment but I've found washing with the cream has brought immense relief, it might be worth trying.

@SureTry I haven't this time around - I was given aqueous cream the first time this happened but it didn't do anything but I'm willing to give it another try!

@keepingbees i know, its so frustrating - the gynaes said that logically it can only be 3 things that make it better during my period

1. thrush - always negative swabs and treatment doesn't work
2. the lubrication from the blood so trying lube/moisturiser after period should technically mimic that but it doesn't help
3. its because all your hormones dip during your period which would mean it could be hormonal but estrogen cream doesn't help and i don't have estrogen dominance.

bah!

@autumnalramblings Progest was the cream that was recommended to me by a friend, she used it all the time (apart from when you are meant to stop). At the time it had to be ordered from Ireland, and it was the best one then. It is a tube.

There have been others since, one of them was in a pot with a little yellow emblem, maybe a sun or something, which was also a good one.

It is best to look at the ingredients list and reviews. Price sometimes is an indicator but don't go for the most expensive just because it is.

'Passage to Power' by Leslie Kenton, an old book now, might be of some interest and help, also Dr. John Lee's original book, if you haven't heard of him www.johnleemd.com/

Some people say that natural progesterone is rubbish and some say it works, in my case I prefer the natural approach because the synthetic hormones made me loads worse and the added side effects were horrendous. I also tried Chinese medicine. With the natural approach you have to keep at it for a while.

Progest helped me sleep too.

What about going on contraception to see if that makes any difference?
No idea what my rational is behind that though!

If I were you I would keep a diary of when it gets better/worse in relation to your cycle and ask for a referral to a dermatologist who specializes in gynecological issues. Eczema in the vulva/vagina is quite rare anyone (I’ve had one GP exclaim “Oooh! I read about that but I have never seen one”), progesterone hypersensitivity is rare and estrogen is even rarer, so you need someone who knows what they are doing even if it is to discount it as a possibility. I would be cautious about putting creams on to see what happens, if it is eczema and it needs proper treatment by a specialist.

Let us know how you get on. Hopefully you will have a diagnosis soon.

I have something similar. Also have latex allergy. Having eliminated underwear etc I was still having episodes. I realised that it was associated with some types of loo roll particularly the aloe impregnated stuff. It turns out that aloe is from similar plant family as latex so we no longer use the aloe loo roll! I also can’t eat bananas and have to be careful with avocados.

Hi @autumnalramblings I also have the exact same symptoms as you and boo, I've also had a very long journey to a diagnosis of eczema. Mine also goes away with my period.

I have had Dalacin cream (steroid prescription) which is inserted for 7 days and really works. I have also worked out that pineapple makes it flare up - I can no longer eat it at all. I feel your exhaustion and frustration- I hope you get it sorted.

Have you tried ice packs, the ones designed for women who have stitches after giving birth, splashing witch hazel on your pads & putting a cup of milk with lavender oil in when you have a bath. Just look up things for women who have had stitches after giving birth, plus only get washed with either plain water or aqueous cream. The milk & lavender will help the soreness, you can splash your reusable pads with witch hazel & them put them in the freezer if you can, anything to reduce the inflammation, even try having either a sports bottle or jug of warm water to pour over the area every time you have a wee to see if your urine is damaging your skin. What do you wash your pads in? Would you be better using napisan instead of regular detergent.

God OP, I have/had exactly this- however I was diagnosed with vulvodynia and vestibulodynia. This was diagnosed by a Vulcan dermatologist dedicated specialist at Guys and St Thomas- if you like I can try and dig out her details (though am not 100% I still have them).

It is 100% made worse with sexual contact for me. Whilst I should add that I have since been diagnosed with a connective tissue disorder and a problem with my autonomic system which I think makes this all worse (fragile tissue, faulty nerve endings etc) I've always had it. It does really get to you doesn't it, in terms of enjoying a sex life!

I was put on gabapentin (for nerve pain) and given lidocaine gel ( I believe it's normally used to cure rhe discomfort of genital herpes so that's a riot at the pharmacy) for the pain. I also saw a specialist womens physio for the painful intercourse aspect and the cycle of tensing when expecting pain (again, happy to find the details if anyone wants to know how to get a referral and to whom)

I had similar and Sudocrem was the only thing that fixed it. The label says not to put it inside your vagina but the GP said it’s ok to put it inside the labia as long as you don’t put it up the vagina entrance. It’s a barrier cream so prevents skin irritation. Of course it’s oil based so it’s possible it can cause thrush! The usual advice is to use only water based products on your vagina. But it was suggested as a last resort so I was willing to try it, and it worked for me.

@autumnalramblings have you had any luck finding out what's causing this yet?

Have you had any luck? I had similar that was caused by thrush leading to dermatitis. Was given the strongest steroid ointment apparently. Was told to treat aggressively with steroid, take salt baths and minimise showers etc. No soap or anything foaming. This was last hope before being sent to a specialist gyne derm. It was so irritated. My god it sent me mad www.health.harvard.edu/staying-healthy/managing_common_vulvar_skin_conditions

It could be Cytolytic Vaginosis or Lactobacillosis. It is overgrowth of the lactobacilli. If it is Cytolytic Vaginosis or Lactobacillosis, then probiotics are going to make it worse.

Sorry you’re going through this OP. I am post menopausal and get itchy and sore sometimes but find Replens and olive oil very soothing.

I get similiar, although mine was diagnosed as lichen scleoris. Similar effect with my cycle though. Anyway, eurax cream is amazing for the itching (vagisil makes me worse, for some reason), and I wash with dermol 500, which really seems to help. I sympathise though, it is utterly horrendous. Oh, and when the itching was really bad, my doctor prescribed me a strong anti-histamine (fexofenadine) which totally stopped the itch and allowed me to sleep!