I want to rip my vagina off!

[Imnotmeanymore3]

Hi all I need advice please!! I'm getting desperate now. This has been an ongoing issue for 3 years and I'm still no further forward. Around 3 years ago I ramdomly started to suffer soreness and itchiness down stairs a few days before my period was due and when my period came it's stopped around day 2. It happened every month at the same time. It was so sore I had to sit on ice cubes, couldn't wear underwear even walking would be uncomfortable. I was given swabs and bloods and everything seemed normal. I was given antibiotics and creams and nothing worked. I had an ultrasound and other than a few ovarian cysts couldn't see anything. They put me on the mini pill in the hope my period would stop but it didn't stop and if anything I get my periods longer now. The soreness has calmed down but Is still there and most of the time still happens before my period but sometimes would happen randomly in the month for a few days. My dp has said the days before I start to get irritated and we have intercourse he feels abit sore the next day but it only lasts a day then goes away. The way it feels now is not deep inside all of the time but kind of feels like I've had a catheter in and around the surrounding area is sore. Im absolutly out of ideas, ive had enough and the doctors doing nothing. I have another ultrasound next month to check on the cyst so im going to mention it again but everytime I do I feel fobbed off. Anyone else had this? I really can't continue it's affecting everything. I don't feel like going out when I feel this way, obviously do not want sex please help me. Thankyou

This was me, I got treated for BV with boots online doctor and it didn't come back

I have similar OP. I've had so many doctors looking at my bits and not one of them can find anything wrong. Mine started as a water infection feeling but over the years I feel it alot on the vulva rather than inside the vagina. My DP also gets sore after sex when I'm having a 'flare up'. I've thought it could be thrush, water infection, sti, herpes, eczema and even thought that my public hair was too long and was pulling. Still have no answers. Theres never anything to see so doctors are a bit stuck. I'm only 25 too.

These symptoms premenstrually and first couple of days could mean there's a hormonal element- though you say the pill hasn't helped.

Many women get thrush premenstrually due to hormone etc changes. It doesn't always get picked up on standard gp swabs. Have you ever tried oral thrush treatments? I've had this, and vulvodynia in the past. I ended going to a GUM clinic which meant I ended up under care of a specialist. She prescribed a course of oral thrush treatment (it can be stubborn) and amitriptyline to help calm down all the irritated nerve endings. I was also advised not to use anything topically esp thrush treatments like canesten. I've not had problems since apart from ocassional post antibiotics thrush, which I treat using 2 oral thrush treatments a few days apart.

You can definitely get this sorted OP.

Have you tried switching to non-bio washing detergent? Preferably a sensitive one.

I had no end of trouble for years, saw a gynaecologist and dermatologist. Eventually was told to switch to non bio and it’s been almost totally gone ever since! 15 years so far

I had a similar issue for years, one gyno finally diagnosed it as Skenitus / infection of the Skene ducts. Can be caused by a load of things, UTI, STI, Irritation from Thrush, or just a random infection.

I was given a strong cream to use daily for a month, then 3 times a week, then weekly, I felt relief within a week. I now have a tube on hand for the first sign of a flare but haven't had one in a long time.

Another thing to consider is cytolytic vaginosis

I have lichen schlerosus and my symptoms are like your first post (but not your second where you talk about feeling it up near your cervix). It tends to flare up just before my period. I have a repeat prescription of a steroid cream and use it weekly as a preventative measure, and then twice daily when it flares up. I was also recommended a petroleum based cream to slather on my bits in the shower as a barrier. I don’t do this religiously but I’d never use soap or shower gel near my vulva.

Mine was diagnosed by a dermatologist rather than a gynae. I’ve had patches of it on other parts of my body (it sort of looks slightly puckered and paler than the surrounding skin).

It can increase the risk of skin cancer (but only very slightly) so it’s worth a diagnosis. I had a biopsy when mine was diagnosed. There’s no cure but it feels manageable now, whereas it was pretty unbearable before.

Obviously it should be easier to diagnose but that’s the patriarchy for you. Good luck!

Dr Louise newson is a menopause doctor and recommends a vaginal moisturiser and not ky as it's drying. I think the one mentioned is called Sylk and you can get it on Amazon. Defo worth looking into peri menopause.

I had something similar to this last year and Dr prescribed me hrt and sent me to an appointment with a gynaecologist. They have diagnosed me with lichen planus and I have to use zerobase cream to wash and moisturise and elocon ointment for flare ups.

I think I get vulvodynia.I don't get as regular anymore but it's a combination of feeling like my vag is going to fall out onto the floor,achey vulva,feeling like I've got a water infection.
Drs don't know for sure but at its worst it was lasting weeks.Now touch wood I only get the symptoms a couple of times a year for a few days.

Given that your partner gets a bit sore too, would it be worth trying measuring the pH (acidity/alkalinity) of your vag every day over a cycle or 2? You might not work out the root cause, but could possibly find if it's a too acid fanny that's making things sore. You could then use something to bring things back to neutral/whatever pH fannies are supposed to be. You would need Universal Indicator paper.

What about the pill/implant so you don’t have a period to start with?
You poor thing though, it sounds horrendous!

As others have said, could be lichens sclerosis - can cause lots of swelling and make everything hurt, defo worse around periods and after sex. If you havnt already, stop using all shower products down there - water only, and if need be an emollient gel to feel clean (I was prescribed doublebase, can also be bought online)
Wash underwear in water only, no detergent (not even non-bio), and try to wear only plain white cotton knickers. Another thing that can really help is washing after toileting, instead of using paper - a pain for sure but does make a difference, particularly in a flare.
See GP again, mention it and see if they'll try you on steroid cream (betnovate if often the one of choice) they might refer you to hospital. No it's no sexually transmitted, it's dermatological/auto-immune. It's often mistaken for chronic thrush - but the thrush treatments, particularly cream/pessary, actually aggravate it even more.

I’d chuck out the lube to start with, plus banish all scented soaps, bath products and creams (also try to avoid your shampoo running down near the genitals when you’re in the bath or shower - anything scented can irritate the vulval skin).

Replace all bath products with something like Simple or an emollient cream like diprobase, and switch your laundry liquid to Surcare. This will help you find out if it’s dermatitis rather than anything else - it normally takes a week or so for any skin irritation to die down.

If it’s still sore after that try exploring whether it’s BV, vaginal dryness caused by low oestrogen, lichen planus or sclerosus or vulvodynia. There are lots of possible causes and most hospitals have a “vulva clinic” you can be referred on to for further tests - ask your GP about this.

Good luck in sorting it out!

@AuntMasha

Could it be vulvodynia? I had this about 10 years ago and your symptoms sound very similar. GPs tend to know very little about the condition in my experience, though I would expect there to be more awareness about this condition today.

www.nhs.uk/conditions/vulvodynia/

painuk.org/members/charities/vulval-pain-society/

It can be treated successfully with tricyclic antidepressants. I haven’t had a flare up for years now. Also, seeing a women’s health physio regularly helped me enormously.

Was also going to suggest vulvodynia.

Alternatively OP could it be vulval dermatitis.

The same thing happened to me last year, had a ultrasound had the odd antibiotics nothing calmed it down and all around period times. After another few months Gp prescribed me 6 months of Fluconazole to be taken weekly after about 6 weeks i started to feel normal. Maybe you need a longer course of the antibiotics.

@lmnoh

I hear you sister ! But mine has been diagnosed as thrush. I've had it every few week for over a year !

I have started on HRT but it doesn't seem to have stopped my symptoms.
I fear the doctors are at a loss as what to do as the normal treatments don't seem to be working 🤷‍♀️

No advise really but we can't be the only 2 !

Have you had long term antibiotics. I had a 2 month course and then was fine and in 2020 had a 3 month course.

It keeps it mainly under control.

Thankyou so much for your replies you've helped me so much. I had no idea there were so many conditions. I've been looking it up for a while now and never really found anything. I use non-bio washing powder already, no soaps in the bath but I have tried epsom salts and bicarb. I think I need a thorough check so I now need to persuade the gyno to actually do something about it. I feel like when I mention it they really have no clue so just put it down to the cyst but I've had cysts before and never had this I really can't see a cyst causing this at all and now I see so many of you have suffered I finally feel like I can actually do something about it.

I have experienced similar in my 30s, I tried everything but the only thing that worked was applying coconut oil externally and some inside, it was so soothing and eventually it stopped happening.

In my 20s I had vulval dermatitis and it isn’t often enough just to switch to non-bio etc - it’s often the fragrances in products and liquids that cause it, so you need to switch to completely unfragranced products and water/emollient for a while for bathing.

I’ve also had recurrent BV when I was breastfeeding and it was caused by vaginal dryness and low oestrogen (hormone imbalance) which put the vagina flora out of kilter. It was often fine most of the month but flared up around my period. So definitely try testing for BV at the times when it’s particularly bad. Lube can actually contribute to this and also to recurrent thrush, as it’s often glycerin based, which feeds bacteria and yeasts with sugar and disrupts the vaginal balance.

But yes, if you don’t have any luck cutting out the lube/products/fragrance for a week or so, or with testing for BV, ask your GP to refer you on as it can be sorted and a consultant clinic will have seen it all and be in a better situation to diagnose you.

Well the girls feeling really sore today. I've ordered the replens and got my consultant ringing me this week about my cysts so I'm going to ask about this again because originally that's what I was referred for and all of a sudden the cysts are to blame but nothings been done for me at all. I am sick of saying the same thing for them to say just continue with the pill when it clearly isn't doing anything ro help. I used to be regular with my periods but since been on the pill (which is meant to stop periods) I get them longer and the soreness happened around a week or 2 before my period so I'm actually suffering more. I'm going to search all of the conditions you lovely ladies have suggested and write then down to tell the gyno and hopefully he'll help me.

Since I gave birth 6 months ago I have had something that sounds possibly similar! At first I thought I had pain from the catheter and when it didn't go after a week I thought I had a UTI and had some antibiotics. I then kept getting random flare ups where it hurt to pee and eventually had a look and my urethra and surrounding area was red. It hurts to touch (so if I wash in the shower or have sex). I only wear super comfy underwear now. When left alone it can feel ok but other times it can feel hot, uncomfortable and can burn. I have been to see a couple of different consultants plus my GP and nobody has suggested vulvodynia to me and instead they have all been really puzzled and made me feel a bit like I'm going crazy. I am breastfeeding and wonder if that it related. It definitely sounds like yours has a hormonal link and I suspect mine might as well.
I have felt less dry down there in recent weeks (I think I might be starting to get my cycle back) and it's felt a bit better so fingers crossed. Dryness was suggested as the cause (from breastfeeding) but when I tried some recommended vaginal lubricants they just burnt.
It's nice to finally find something online regarding this that is relatable but also sorry fo hear your going through it!

@username9574 sorry your having problems aswell and yes the gp and Consultants have always looked at me like I'm going crazy but it seems very common. I'm at my witts end now so when I see the consultant I need to tell him I need more doing no more antibiotics or pills that haven't worked. It's just so uncomfortable.

I was exactly like this for years and couldn't get to the bottom of it either. I tried everything known to man and was tested for everything. I scratched myself silly until I was scabbed and bleeding. It always flared right before my period and it was always much worse at night. All any one could suggest was that I was in an itch scratch cycle, but I knew that wasn't the case.

Then literally the day I fell pregnant....it disappeared overnight and has never come back.

I spoke to my midwife about it and she suggested it had likely been a hormonal issue in the first place....and that my estrogen levels had been off. Being pregnant had reset them somehow? I have PCOS, so it made sense.

It might be an idea to get your GP to check your hormones levels? You said about ovarian cysts in you OP, so it could be the issue is Endocrine rather than Gynaecological.

Good luck with it, OP. I know how awful and irritating it can be.

Have you ever tried treating for bacterial vaginosis using BVactiv gel?