Does anyone suffer from vulval pain?

[Ouchbloodyouch]

I've had it for 21 years. Maybe for 20 of those it was Once a year or two years. Now its maybe a week out of every 4 where I am pain free. I am in despair. I am under have a consultant appointment soon and have just started amytryptiline (sp )
I've posted this in relationships as this is my regular home.
Can anyone say if this will get better?

Maybe not something anyone wants to admit to. Don't know where else to post. Chat feels wrong...

Have you ruled out allergy to sanitary products? I used to get pain and tiny little splits. It would take a few weeks after end of period to get better and I didn't put two and two together. It turns out I can't use any tampons or towels. I use a mooncup now and problem solved. It may be unrelated but maybe worth a shot?

Hi, yes I do. It's been nearly 7 years now. Check out the Vulval Pain Society, they have good info and advice on their website. I think it's really important to see a specialist - and there aren't many with experience of this problem unfortunately. Feel free to PM me if you want recommendations (depends on where you live).
What helped me was seeing a very good gynaecologist and a women's health physio. I was on Amitriptyline but switched to Nortriptyline (which is similar but fewer side effects I think). Also used lidocaine gel locally which helped.
Good luck and my sympathies, it's a really shit problem to have

If you want to move the thread somewhere more suitable maybe you could ask for it to be moved to general health?

Yes, me, I empathise, it has made life very difficult. Things are much better now - weirdly because I met my DP who has bad performance anxiety - the mutual understanding of difficulties with sex has helped us both to relax more which has broken the vicious circle for both of us. Still not perfect and full sex is rarely completely comfy but I am able to enjoy it a whole lot more than I ever have. My story won't necessarily help you I realise but just extending a hand to hold and a bit of hope. It's real, more than anything, don't let anyone fob you off with the it's all in your mind stuff - it probably is but it still bloody hurts!!! Unmumsnetty hugs and hope you get things sorted.

Thanks both for your replies. Every time i get a really bad flare up I have to go for the whole gamut at the ISH dept. Nothing against that by the way but as I am not sexually active I still feel . I still had to go though as my partner left me for OW so you never know
Everything is negative thankfully but on every occasion I feel that when they announce I am all clear I am supposed to be grateful and that is the end of the matter. The last time (before last week) I was sent home with lidocaine (which stings to hell on application ) and a tub of aqueous cream! No follow up. ..
At least this time I have been referred.
Ginger unsure about the sanitary protection. There doesn't seem to be a correlation but I did have a terrible reaction to some replens which my mum suggested ( bless her She thought it might help and so did I ) it may have been a coincidence.
Not to make light of anyone being upset by an STI diagnosis but last week I would have been delighted to have an STI. I would know what I am dealing with then. Its been unbearable.
Emma thank you. I will pm you tomorrow. I appreciate it x

Daisy thank you for replying too

Actually daisy your story does help me as its good to hear you are having a lovely relationship!
As I said to my mum at least it will sort the wheat from the chaff when it comes to future partners!

What sort of pain is it ouch? skin or muscle? internal or external/entrance?

I have vulval dermatitis/vulval eczema, when this flares up I get itching and small splits/cuts in the labial skin, like paper cuts, and I also tear very slightly (can't see it but can def feel it) during sex.

Are you sure it isn't a Bartholin cyst? (google it)

What exactly do you mean by vulva pain? where precisely? true pain or ache? internal external?

Mini. I think you may be on to something.. on this most recent occasion i actually have splits. Its always been a general burning /throbbing with no apparent outward signs but this time its worse (the replens?) In fact the lovely lovely doctor I saw thought there was something else going on in addition to the usual pain. She thought thrush which was ruled out immediately (v quick lab results ) and herpes was negative too. Tbh I would have welcomed herpes..thats how bad the pain is!

self def not a cyst. The pain is like like your fanjo is on fire. It throbs. Not in a good way

Oh i feel bad now as if herpes is a walk in the park.... its just that my latest episode has been going on for months with no respite

thos thread mention cuts I had pain but it was varicose veins.

?

If you think it's skin based, I would suggest asking for a referral to a vulval dermatologist - I saw one at St Thomass who finally diagnosed my vulval eczema after many wrong GP diagnoses.

No cure per se, but she prescribed a steroid cream which definitely helps and also said use no toiletries at all down there, just water (aqueous cream if the skin gets dry). So that would fit with you having a reaction to replens. Several years on mine is actually almost gone.

could it be a reaction to washing powder? do you use soap or shower gel on your bits (if so, stop!) do you get itching and any sign of little cuts/splits in the labial skin and bits of skin rubbing off in your labial folds? (sorry v personal!)

There is also lichen sclerosis which is similar at first but also ends up with scarred thickened labial skin.

I have vulval and vaginal pain. The pain is at the entrance to to the vagina and around a bit further and inside on the front wall. It feels like a sharp sensitive pain like a graze being poked almost like a burn.
It gets worse around the week before my period but I have it all the time.
We don't have piv sex much as it hurts but we do mutual masturbation, oral, toys. My clitoral area is not painful. I still have an enjoyable sex life.
I just don't want to be in pain sitting down and I fear if we wanted to try for a baby. Doctors have come up with nothing expect that maybe I'm tense. I'm definitely, it isn't vaginismus but I get fobbed a lot with that . I've been tested for every STI every time and I still don't have any!
I wish I was taken more seriously. I've seen online there are numbing creams and certain tablets but gynaes never want to give me those

You poor thing itsbetter I had to present myself in an absolute state (crying with pain) to get taken seriously this time.
My pain is also vulval and at the entrance to the vagina!
Go back and insist on the lidocaine.
It was a little embarrassing emerging from the examination room in tears. Goodness knows what the packed waiting room thought I had been diagnosed with! It was just the pain of examination

Coco thanks for the thread link. I will ask for this thread to be moved to general health too. I posted here last night as I spend a lot of time with you lovely people here I was desperate for traffic.
I usually post under a more amphibious name....

You are not alone I'm currently experiencing very similar and I'm going back to the docs to beg for dermovate. I suspect LS or excema. It really stings when I wee I get given canestand

I suspect I've had this for twenty plus years but with me possibly being peri menopausal it's set a whole chain of symptoms off. The tiny tears sound very familiar! My clitotris also was so dry and sensitive even my gusset rubbing it was agony !

Oh yes the weeing razor blades . I do hope its not LS. To anyone suffering please go back and be firm. I had actually booked a GP appointment before the replens incident because I didn't feel anyone was taking me seriously

Good luck

Sitonyourdress , if you think its perimenopausal ask your dr for hrt prssaries. They go by the lovely name of Vagifem .
You use 2 a week to stop vaginal dryness.

I had this for several years, I think my pain was associated with interstitial cystitis. I'm pretty much pain free now but I have to be careful and avoid jeans, synthetic underwear etc. Things that I found helped were:
Coming off the pill (the hormones made my vulval pain MUCH worse).
Wearing 100% cotton underwear.
Washing underwear at 60 degrees with only a tiny bit of non-bio liquid.
Avoiding getting any shampoo/shower gel on my nether regions
Drinking lots of water so my wee was quite dilute
Avoiding tights

In terms of treatment, I had a long term (think years) course of antibiotics which eventually shifted the cystitis and steroids (eumovate, dermovate) for the vulval pain. The steroids did help but it took a long time.
You have my total sympathy- at the worst of it, daily life was agony for me, felt like someone had cheese gratered my ladybits. It really affects your whole life whilst at the same time, you can't talk to people about it ("Oh yes, I was off work yesterday because my vulva hurt!"). It's so hard to access good treatment as well, most GPS are clueless and refer you endlessly to the GUM clinic (I also wished for a UTI!). Ask to see a gynae and a dermatologist and stand firm.
Good luck!

Forgot to add, look up Natracare tampons and pads. They're organic and soooo much comfier than always etc. I found synthetic pads and tampons really aggravated my pain.