Ongoing nerve type pain after thrush - vulvodynia? - has anyone had this?

[zippy30]

Hello, I'm posting this in the hope that someone may have had something similar, or could give me some advice.

Around March this year I started to get the symptoms of thrush - all the usual things - discharge, itching, slightly swollen and red. It was annoying, but having had thrush a couple of times before, I didn't think much of it and just treated it myself with a canestan pessary. It seemed to clear up, but then came back and this patterned continued until the end of May - me self-treating with canestan and the thrush returning. I went to my GP and she examined me and took a swab, which came back clear for everything. But perhaps thrush wouldn't show if I'd recently taken an anti-fungal?

By June, it seemed like the thrush was starting to subside, but a really strange uncomfortable feeling around my vulva still remained. It was like a burning, stingy sensation and the whole area felt over-sensitised. Again, my GP had a look, but couldn't see any external symptoms - it didn't look like excema or dermatitis. She was sympathetic, but could only give me a prescription for hydrocortisone.

The hydrocortisone made no difference and since then, I've had a constant uncomfortable, burny nerve type pain in my vulva - mainly along one side around the inner labia and sometimes it feels like it spreads onto the skin at the very top of my inner thigh. I'm uncomfortable when I'm standing, walking, sitting - all the time really. It eases slightly when I'm lying down.

Having searched the internet for answers, I think it might be something called vulvodynia (basically unexplained pain in the vulva) and may have been caused by recurrent thrush. The nerve endings can get irritated/damaged and over-react, sending out pain signals when they shouldn't.

At this stage, I just don't know what to do... Should I go back to my GP and ask for a referral to gynaecology? Even then, I'm afraid of not being listened to, as despite my pain, there are no visible signs.

Has anyone had any experience with this? I feel like the only person on the planet with this problem and it's really getting me down. If anyone could offer any advice or help it would be very much appreciated.

I have been diagnosed with vulvodynia this year. It started with cystitis type symptoms and never really went away. I had a really bad burning type pain, and it was always worse when sitting down. Id get relief from moving around. Back and forth to the Drs a few times who said it was thrush. Treated for that a couple times, no help. Back on antibiotics, no relief. I mentioned vulvodynia to my GP, who said it wouldnt be that as I didnt have one certain symptom.sent to the urologist, who was awful and wouldnt listen to me. Eventually got a referral to the gynaecologist, but the wait was too long for me to cope with, so I went private and got a diagnosis of Vulvodynia. I am now taking amitryptaline for pain relief and have just started physio, and feel like my life is getting back on plan. I still have twinges of pain, but nothing like the constant pain that I was in before

Thanks so much for your reply TP450 and for sharing your experiences. I'm glad you're starting to find some relief from the ongoing pain. You have my sympathies as I know how awful and draining it is. I think I have vulvodynia, but I'm worried about mentioning it to my GP and being fobbed off or not listened to... But I think I need to bite the bullet like you did and keep pressing on until I can get some help. Might consider a private gynaecologist. How are you coping with the side affects of amitryptaline?

If you are finding the wait for NHS too long, and you can afford to see a private Dr I would say go for it. It cost me £180 for the appointment, but it was so worth it. I would of had to wait another 3 months for my NHS appointment, and I couldnt bear to be in the same pain as I was for that long. Once I had the diagnosis, I then switched back to NHS, so havent had to pay for the physio. I find the amitryptaline ok, but I do get a very dry mouth and can get quite constipated. I dont get any of the grogginess that a lot of people seem too. I hope you get some relief soon. I found an ice pack held against myself really helped to soothe. Rather than use a square ice pack, i froze water in a 500ml water bottle.

I was diagnosed with this yesterday. I think I've had it many years but was too embarrassed to go to drs but the pain is affecting my sex life so I but the bullet and went to drs. Got referred to gynae and had my appointment yesterday.
I really really struggle with any kind of internal examinations, been known to screech in pain need gas and air etc. Smears are a nightmare. I'm not embarrassed to go but i find them agony and they will induce a panic attack.
The gynaecologists was very gentle and we got through it... she said even with a cotton bud she could see how much pain I was in. I am in pain a lot and sex can be agony.
She wants me to try a numbing gel for sex but surely that defeats the purpose of having feelings during sex? I'm in a newish relationship.after an 11 year stale one and want to enjoy sex and all it brings again! She's also suggested amiltyptiline but I'm not sure about taking antidepressants either! Seems to be very limited treatment options!

Amitriptyline is for nerve pain. It usually works well. It used to be used as an antidepressant, but not much these days.

Hiya! I had vulvodynia for 7 years. Thank god those days are behind me! So sorry you’re suffering.

For me it was thrush every month before my period (which I still get some months) - the constant irritation led to the nerve issues. Had thrush on my wedding day even 🤯🤯🤯

I found I really had to push hard to be taken seriously - numerous consultants just discharged me with ‘thrush is normal, lots of women get it hormonally’ and then didn’t even address the pain issue. So infuriating. I was age 19 when this all began so not well rehearsed in being pushy.

Anyway. Tried amitrptyline which I found didn’t do much. Was prescribed prolonged courses of clotrimazole (canes ten) pessaries which helped the thrush but not the pain. Tried EVERYTHING for the thrush, from my own research, I kept a word document to show doctors so I didn’t have to list everything from memory. Elimination diets etc. The only thing that seemed to get a handle on my thrush issues were ‘Kolorex Hiropito extract’ capsules. Nowadays i sometimes take OptiBac women’s probiotics. I got a handle on the thrush finally and over time the pain from the vulvodynia subsidised (that had been diagnosed along the way by a consultant).

I had 2 babies so not sure if I just ‘grew out’ of the thrush phase, maybe my hormones changed. I am still quite prone and use a canesten pessary every so often for good luck. Hope you can get over it sooner rather than later - amazed I managed to even conceive any children considering the pain of vulvodynia!!! 🤣

Oh yes the numbing gel too! Years of that! The idea with that is I think to numb the area, have pain- free sex, and thus re-educate your nerves that that area has no reason to be in pain.

Thanks so much for your responses everyone. Sorry I'm late getting back to this - to be honest I've been so down about this that I've just gone into denial mode over the last few weeks.

It seemed like the pain was easing slightly and now is back again. I've been taking Kolorex and a probiotic and it's helped to keep thrush at bay during the last few months. Just need to remember to take it... I've missed a few days and feel like the thrush has returned... again!

I think the worst thing about vulvodynia and this ongoing nerve pain is the sensation of discomfort when I'm walking... just horrible. I'm going to go back to the GPs and if there's a long waiting list for a gynecology referral I'll consider going private. It's good to hear that amitrptyline doesn't seem to have horrendous side effects. At this stage I'm willing to try anything.

Thanks so much and it's good to know I'm not the only person who's had this.

My 10 year old dd has this, she's had it since she was 6 started with recurring UTIs then thrush and this, we've been attending urology and dermatology for years now, she is exhausted with it and at present we are going through an extremely bad flare up. Unfortunately we have been told she is too young for anything other than calpol and nurofen which really aren't doing anything. I've bought instant ice packs to help with some relief.

She is currently missing so much school as with it bing in her intimate area she is unable to use the instiligel herself and school can't use. It's impacting her life massively I wish I could take it away for her x

Have you found a cure? I am experiencing same thing

Hello Zippy! Sorry to hear you've got... what I've got! It feels so lonely when you start experiencing the burning with no diagnosis- I've had mine since November. The doctor suspected UTI gave me two antibiotics, then antifungal cream with no examination or swabs whatsoever and then I let it ruin my honeymoon and Xmas abroad as I was very scared what could it be. After seeing my GP's at my local practice another 4 times I thought that's it- went private and they said no sign of infection and your skin looks perfectly normal so they gave me strong steroid cream to use. I must say it brings some relief but if i go for a walk that is 10 minutes plus the burning is very much there again. I am on amitryptoline but because it's so hard to see a doctor at the moment i had to decrease my dose to minimum so it doesn't make much of a difference (my mood improved though! honestly i cried everyday). I am planning of gradulally going from 10 to 30mg if they let me as like yourself i suspect it is nerve pain. Mine usually comes on in the afternoon when I've moved about, thankfully I wake up quite happy and it doesn't interfere with my sex life but forgot long walks or runs. It's never an itch it's always a burning sensation similar to a bad sunburn, the skin is overly sensitive and I can't wear jeans anymore. It's been a journey and I described my issues and attempt to fix it in my post 'burning vulva only when walking'. Have a read if you wish too. What I would say to you try the amitryptoline- I had ZERO side effects and been taking it two months, be patient with it and increase the dose very gradually- people swear by it. I almost came to terms with the whole thing which is ridiculous as walking shouldn't hurt but because I felt so misdiagnosed and ignored for so many months and arrived at the diagnosis of overreactive skin nerves I no longer feel like my health is in danger and think of the pain in a very different way. Will still push for more investigations with my gp but there is literally nothing to be seen so wondering what the next step could be. The light touch test did not work on me- my vulva does hurt when i wash or touch it, only when I walk. So mysterious and hope it will go away one day. Wishing you all the strength and if you are thinking about going private maybe find a vulva dermatologist nor a gyneacologist? just a suggestion. Sorry about the longest post ever! x

Also please look into getting the flora plus gel -it comes in those tubes. My gynecologist said it's 100 x better than oral capsules as the probiotics need moisture to survive and it's best to apply it directly. Some people find it messy i think it's fine if you use them straight before bed. They're a bit pricey bur prevent thrush well :)

oh this is an old post! only noticed. please let us know your updates ladies! :)

Hi ladies, does anybody have any updates on their symptoms and progress please, I know it's an old post but I'm suffering really bad with lots of burning in the vulva and clitoris, this is jyst horrendous, id appreciate any help or reassuring updates.
😊😊

I had this last year and it disappeared on its own, I saw a gynae who did a smear which came back clear. I was given a moisturiser and steroid cream. As it got better I stopped using them. The pain is back again! Any advice would be appreciated

I have had this twice, in my early 20s for 5 years and then again years later, for 11 months. I tried amitriptyline up to 80mg but it didn't make any difference and I had my pelvic floor assessed and that was fine. My theory is that it is somehow caused by sensitivity to toxins caused by gut dysbiosis. I found it flared up really badly if I tried to do anything to improve my gut health. Basically both times it went away after I changed my diet to a clean gut health one (mostly veg, protein, no sugar or refined carbs or alcohol). It took quite a long time to work (9 months maybe?) and I don't think it was just the diet, what made the difference was strong probiotics (VSL#3) and one of the enzyme treatments (Candex, Syntol). Prolonged courses of fluconazole didn't work but both times it was triggered by a bout of thrush. I had some symptoms of interstitial cystitis and irritated bladder which cleared up too.

My update- ditched amitryptyline (due to trying for a baby) and got rid of my pesky vuvlodynia with mind-body work. Sounds too simple yet it's only think that helped. 100% gone, back to using any shower gel, wearing jeans and eating whatever. I recommend looking at your emotional health, ladies if doctors don't know what to do as there's no diagnosis/reason for help the solution might be in addressing your repression emotions. Hit me up for advice, i'll happily reply to private messages, suffering with chronic pain is so horrible.

Hi there, I hope you don’t mind me bothering you, but you said contact for any advice. My mum is 75 and very fit for her age but has suffered with recurring cystitis for 25years. Due to a combination of long term antibiotics and stress of lockdown and a very difficult move in the pandemic she developed terrible thrush which just will not go. She been on some really strong antibiotics, she’s in a terrible way and it’s getting worse. Pain, stinging, burning around the vulva now all over the body. I’ve spent hours on the net and did read about vulvodynia and considered it. She’s convinced it still thrush and drug/nerve damage. She’s not the mother I knew, my father is desperate. I think it’s all been compounded by lots of stress and anxiety over her pain and mentally lockdown has made it worse, she’s very depressed. The doctors and hospital have been terrible, but a new doctor today confirmed it wasn’t cystitis or thrush but vulvodynia. I am thrilled we have finally had a diagnosis, where can we go from here? You seem to have had success and mentioned about it being triggered emotionally. Any advice or help would be so gratefully received. I’m desperate. Thank you. Jo x

Hi Amersham, I started this thread and haven't checked it for ages, but I just saw your comment and wanted to reply. Your mum has my heartfelt sympathy. I know how draining and depressing this kind of pain is. You feel like nobody understands and nobody listens to you and it feels like it will never end. It's also embarassing and you can't share it with many people, it can leave you feeling very isolated. I had a burning, painful vulva following a 4-month bout of thrush. I can understand your mum thinking she must still have thrush, even when tests prove otherwise. I was absolutely convinced of this too. The sensation was like a severe thrush, yet I had no redness etc. I had ongoing discomfort and pain for around 6 months and then (thank goodness), it started to gradually ease off. I could get through several hours without noticing it. I could go for walks again. I'm now able to wear jeans and can go for runs - this was unthinkable when I was at the height of my vulvodynia pain. I couldn't even go for a 10 minute walk. Having researched this condition, I believe it's a form of inflammation, an over reaction of your immune system. It's like your nerves go into overdrive and send out pain signals when they shouldn't. I also think I have interstitial cystitis (albeit mildly), and this is closely connected with vulvodynia too. I think stress triggers and exacerbates it. Like mia2201 said, I think it's also in some way connected to a build up and suppression of emotional pain. I still have occasional flare ups that last for a couple of weeks and then ease off again, but my pain is nowhere near the level it was during 6 months in 2019. Thank you to other posters further up this thread for your responses. It is heartening to know that I'm not the only person who has experienced this and to hear about how you've dealt with it. I was in the brink of taking amitryptiline, but didn't have to in the end. I hope I can offer your mum some comfort that people do get beyond this and our body has capacity to heal over time.

Hi @Amersham, sorry to hear your mum is suffering. I had what I believe was the same thing! It was a stinging burning pain but nothing could be seen, I went to the sexual health clinic and all tests were clear, I booked a private gynae appt and had a smear which was clear. I don’t know what made it do away, it could be complete coincidence but I stopped using normal laundry detergent, replaced it so dj natural soap nuts, started washing my hair over the bath so no shampoo comes in contact with down there, started using a natural non bleached toilet paper, like I said it could be. Coincidence but it went away! I was desperate I didn’t know what else’s to try, it’s worth a go, really hope your mum finds some relief soon x