Irritated vulva / Vulvodynia

[lavenderlilaclily]

Does anyone have any experience with this? Especially experiences of relief or things that helped?

I had what I, and my GP, thought was a yeast infection back in March of this year. I treated it, but the symptoms persisted, so I treated it some more, and some more, all the way into April when swabs were coming back clear. I won't lie, I was pretty desperate and anxious about treating it as I was desperate to try for a baby after my son was devastatingly born stillborn at the end of Jan.
I did manage to get pregnant in May, as I gritted my teeth through the pain in desperation.

Since then I've been swabbed multiple times for thrush and infections, and everything comes back clear. But my vulva burns and itches ALL THE TIME, especially when walking. And itching at night. Underwear is uncomfortable. Jeans and leggings are a no. Sex is definitely a no.

I was told by dr at the sexual health clinic and by another gynae that it all looks normal. I was prescribed super potent steroid (Dermovate), but it hasn't seemed to make any difference. I'm following all the gentle vulva skin guidelines (no soap, no irritants, emollient ointment) but nothing seems to make much difference. I've also been trying mind body work - meditation and journalling - as after hearing I had a stillbirth everyone just tells me it's stress. Which I can appreciate contributes to it, but still, surely it can't be just that and it leaves me feeling a bit fobbed off..

Anyway, just looking for help, or similar stories, or mostly - hope!

Hi. I'm sorry to hear this. Try going no knickers and lying legs akimbo wherever possible? And congratulations on your pregnancy, and sorry for your loss in Jan xxx

When the swabs have been done have you been using any creams at that time?

I was testing all clear but when I managed to not use any creams for a week and swabbed I tested positive for thrush and BV. The doc never even mentioned BV as a concern because I assume because I didn't have any noticeable discharge.

It took nearly 12 weeks to get an answer. After a treatment for thrush and BV I've had thrush twice since but it seems easy in comparison to the BV.

I'm also pregnant. You have my sympathies, it's miserable.

@Nichola2310 I haven't used any thrush creams or anything since April, have been swabbed multiple times since then (I ask my midwife for a swab every time I go as I always find it hard to believe!) and everything comes back negative.
In May I had an extensive swab test done by a gynae that checked for everything including rarer types of yeast and it was all negative.. bizarre as it really really feels like thrush. At first I thought maybe I had a reaction to the thrush creams but it's been 5-6 months since I used them so surely a reaction wouldn't last this long?

I had something just like this. I had thrush initially (I think) but that cleared and then I was left with what you describe.

I had lots of wrong diagnoses (incl early menopause… I was 29) but eventually saw a specialist vulval dermatologist- who knew they existed?? She diagnosed it as vulval eczema. I was prescribed Locoid a steroid, which helped. It wasn’t an overnight miracle but gradually it went away.

I am so so sorry to hear of your loss. For TTC purposes it may be worth tracking ovulation so you can focus DTD at the right time and give your poor bits a rest at other times?

Possibly Lichen Sclerosus? Do you have any white patches on your vulva or splits in the skin?

It causes intense irritation, itchy. burning sensations.

Hi @minipie sorry to hear you suffered the same!
That's comforting to know that it helped. How long-ish did it take to gradually settle down, if you can remember?
I have used a steroid cream but it was a super strong one and I'm not sure if it was too strong and just kept irritating it...might see about a milder cream next time.

I've been waiting for an appointment with a dermatologist for months - I'm hoping this is my saving grace but still haven't heard back with a date!

Thank you ❤️ I did manage to get pregnant quickly which felt like a miracle, so I am 21 weeks pregnant now - it was the unsexiest conception ever though given the circumstances, and sex has been off the table since which has been making me sad as given all the grief and anxiety from pregnancy after loss I really crave the intimacy :(
I am also keen to get this sorted before I give birth though!

I have this - I assumed it was to do with menopause, but possibly not if younger women are also getting it. I've been managing with Vagisil but I wish I could find a proper cure.

@StiggyZardust I do every now and again think hmmm maybe it's LS - but I don't have any of the physical signs - no white patches or splitting or fissuring or anything like this - and when the gynae looked a few months ago she also said there were no signs of it. But I guess unless they do a biopsy there's no way of knowing!

@lavenderlilaclily

I kept on getting thrush/irritated skin in my pelvic region.It went on for ages and it was really getting me down.Then one doctor decided to have some blood tests done and it turns out the cause was diabetes.

I was going to suggest psoriasis but I see you have had dermovate and it's not worked - genital psoriasis is something my GP missed for years. Eventually at the gynae for my sterilisation consult she convinced me to try a mirena and spotted the problem straight away!

I had vulvadynia for 2 years and it was agony, so I can empathise. Doctors couldn't find evidence of any infection, std, thrush, exczema etc and there was no particular redness. They even sent me to counselling! Eventually I found a doctor who did some research and prescribed gabapentin, which is an epilepsy drug used to treat neuropathic pain. It did the trick. I was on that for a while, came off it to conceive and have never needed to go back on it.
Worth speaking to your doctor about, anyway.

I recently had similar symptoms but the steroid cream and E45 itch relief cream seemed to irritate me more. I was recommended plain old Vaseline which actually started working after a couple of days.
I hope you find some relief soon…I literally feel your pain.

Sorry, I missed that you're pregnant - congratulations! I'm not sure Gabapentin is OK for pregnancy.

I had similar when pregnant, it went after the birth. No reason was ever found, now I put it down to excess hormones or stress. The pregnancy was stressful as it followed a traumatic miscarriage. I also suffered huge rashes mostly on my lower legs in the last few pregnant weeks. Baby was/ is a girl, and I wondered about the hormone aspect?

I had this for a couple of years and did all of the things you are doing - no clothes conditioner, no jeans etc it eased off after a year or two and returned briefly when I had my 2nd. That time the GP did prescribe a lubricant called Sylk, which helped. I occasionally have days in my cycle when I feel sore and uncomfortable and still use the lubricant - although I buy it directly from them now

Sorry to spam your thread, but you might find this site useful!
www.nva.org/learnpatient/medical-management/

Thanks so much for everyone's responses. I can't believe how many people have suffered or are still suffering from this problem! I'm so sorry you've been through this, it's awful.

@SignOnTheWindow thank you! Interesting you've had success with gabapentin, I'm glad to hear it! I have also heard some things about amitriptyline which is mentioned on the link you posted. Can't take either of those now but if things don't ease after birth I will ask for one of these

@gluenotsoup that sounds a lot like my situation. I'm sorry you had to go through that. I think there is a part of me that hopes it will just go after birth.

Have you considered worms? (Only skimmed the thread) I had similar, no itching around anus but worm treatment sorted it. Worth considering if you haven't.

Have you tried vagisil it is very good?

Hi,

Couldn't read this and not reply. I have vulvodynia from the age of 14 up to trying for my first child when symptoms eased at 29. I really do sympathise as it's utter agony and absolute hell to live through.

Congratulations on your pregnancy & im so sorry you have experienced the heartbreak of your stillborn baby x

It sounds like it is vulvodynia - I went through the diagnosis of thrush, imaginary 'all in your head - you look normal', 'you are just small' etc. A consultant wanted to take a biopsy to test the skin, thankfully I said no.

I was finally diagnosed at 21 (in 34 now).

The steroid creams eventually did make a small difference to me. Amitryptaline (can't spell it sorry!) made so difference to my quality of life but it was gabapentin that really helped. Oh and ice! Pads put in the freezer really helped. You are limited in your treatment options to an extent depending on your thoughts of medication in pregnancy.

I went through a lot of counselling via my obstetric consultant when pregnant re the likelihood of my symptoms returning full on after birth. The research has actually shows that most women report an easing of symptoms post birth so it may be that what your going through now will likely change just on its own. If not there are options out there, there are lots of us out there too so you are definitely not alone in this!

Have you been referred to a gynaecologist? Xx

@Soozikinzi

Have you tried vagisil it is very good?

I have used it. It stops the itch because it has local anaesthetic but it doesn't actually fix the problem.

@lauraloo49 oh my goodness that sounds absolutely awful, you poor thing. I'm glad it eventually went for you but that is so long to suffer - and so long to get diagnosed!
Thank you for sharing your story and what helped you, it's immensely helpful and I appreciate it.
I am limited right now due to pregnancy but it's good to know what I can ask for after. I had a look online last night and it looks like there have been a few instances of topical gabapentin being used (probably mostly in the US from what I gather) - I might ask for this for after birth before taking any oral meds.
That's really comforting about the research showing that it goes for lots of women after birth, I will keep fingers crossed that this is the case.
I have seen a gynaecologist who gave me the dermovate. I've another appointment in November, and I've been referred to dermatology too though I've been waiting on that for ages and there's no sign of it materialising. I might also ask my consultant next time I see her as maybe she can help too, I haven't really mentioned it to her as of yet.

thanks again xxx

@Soozikinzi I did use it at first with the thrush and I must admit it gave relief, but then was told to avoid it as it has lots of additives, perfume etc which can irritate skin more. I was given an anaesthetic ointment that's a bit stronger than vagisil but I've been wary of using it in pregnancy as, as is the case with so many meds, there's little research on it in pregnancy

I finally had my dermatologist appt today and been diagnosed with LS, haven’t got any white patches or fissures etc but just so sore when wearing jeans, walking or any form of contact. Been prescribed a strong steroid cream, some sort of spray and Balnium to shower with. I don’t use any scented toiletries, wear cotton underwear and anything else that supposed to help. I’ve got an initial 3 month plan with the treatment then it changes to maintenance dose. Praying it works as it’s so miserable isn’t it. Hope you get some answers soon. x

@Slimerecipehell sorry to hear you’ve been suffering too :( that’s good you’ve got a diagnosis now and a plan. Hope you get some relief soon.
Interesting that it’s LS with no physical signs! How did they diagnose it then, purely based on symptoms or did they take a biopsy or was there something else that pointed to it?