Loosing the will with my broken vagina. Still itchy and irritated. No sex for 12 weeks.

[niqnet1]

Morning,

Hoping someone can help. I posted on her a while back about starting with Thrush/Bacterial Infection symptoms during first week of September. I haven't been able to have sex for this duration and I'm starting to feel low about dealing with this.
My symptoms have changed over time but I'm far from back to normal.

Symptoms:
Tenderness and itching around urethra (in vestibule i think)
Discharge sometime makes me itchy other times doesn't bother me. Just had two weeks with no issues with discharge but it's pissing me off again.
Feel pressure in urethra and it feels swollen. Sometimes not always.
I can feel fine most the day and fine when urinating then after wiping i get itchy. This settles and then starts again after wiping next time. If I don't wipe, symptoms are better.
Sometimes I get a mild achy feeling in vagina but the burning and itching in this area that I had a month ago has improved.
It's mainly my urethra and around that area but any sort of sexual activity in that area will make me feel swollen and irritated.

Facts:
Urine has been tested- no infection
Had four swabs- one showed possible BV on the scope at GUM clinic but lab didn't grow anything. All swabs negative for Thrush & BV etc
Despite this- had multiple fluconazole tables plus canesten pessaries and cream. These did improve symptoms.

Tried using steroid 1% cream, BV gel, vulva moisturisers- all help a bit but not enough.
Had vulva swabs, high vaginal and low vaginal- all negative.
Been examined by 3 doctors- GP and two GUM clinic doctors- all say I appear a bit red around vulva but apart from that they can't see anything.

Wondering about:
Toilet Paper allergy
Worms - my daughter had similar symptoms and did have worms but we have all been treated and I've done the military hygiene thing alongside meds. Again my symptoms improved somewhat but not 100%.
Vaginal Atrophy- I'm on Rigevedon taken continuously with a break quarterly for a bleed for management for Endo after a lap & excision last year. I'm 34.

Skin condition of some sort but again GUM clinic don't think it's dermatitis, Lichen S or Lichen P.

I'm loosing my mind. Please help. My Gp's are useless but I have insurance so I can see a specialist but I just don't know who to push to see.

Please help. Off to cry.

PS Sorry for long post.

PPS Husband is very supportive but we both miss sex and over the years we've been together my gynae problems have caused so much grief in this area!!

Hi OP, I’ve had similar ish problems (skin more splitting/tearing though). After faffing around with the Gum clinic they referred me to a gynaecologist specialising in dermatology. Won’t yours do that? Mine was based at St Mary’s in Paddington. Also there is an online group that meets called something like the Vulval Pain Group (catchy!). I never went but they had a lot of resources on their website. Hope it improves soon.

The idea that being on the Pill means you don't need topical estrogen is wrong. The Pill is a synthetic estrogen and of course it's also 'moderated' by the progestogens in it each month. So yes, you could still need something topical.

The expert in London is Prof Wendy Reid - vulva expert. I think she's at the Royal Free but also has private clinics.

www.132harleystreet.com/consultant.php?id=94

I've had dermatitis with similar symptoms (gyne diagnosed). I had to use a strong steroid cream twice a day for six weeks. What body wash are you using? She said only specialist eczema stuff from the pharmacy. Salt water (plain kitchen salt) baths every evening for half hour, quick shower in the morning only if necessary. After two weeks add a tiny amount of vegetable oil to every other the bath. If the area needs soothing use a drop of vegetable oil - not olive or other oil - but give it two weeks to settle the inflammation. Never use lube, only the oil. This cured mine and I was vvvvvv sceptical! Still using the wash and doing the salt baths most nights.

Thank you everyone. If I'm honest I believe the pill to be partly to blame for my symptoms but I need to see my endo gynae to discuss my particular circumstances as I can't use all types of hormones to manage my endo regrowth.

SoSo- I just use cetraban in the shower to wash my whole body. Could you see anything down there when you were diagnosed? I have only two very small spots of mild reddness either side of my urethra.

I guess the problem is that it could be many things so I just need someone to diagnose and come up with a plan I'm comfortable with to try and get on top of this so I can hopefully have sex again one day! :-)

Marm- The Gum clinic here in North Wales said they couldn't refer me privately and I'd have to see my GP for that. Hence appt yesterday. It woud have been a lot easier if GUM clinic could have done that as then I would't have to see GP who seems limited in knowledge in this area who has decided to diagnose me without even examining me. Sorry. Rant.

Just an update incase anyone else suffers similar.

The dermovate seems to be helping. Feeling much more comfortable.

I still intend to see a specialist just to get a formal diagnosis but not feeling as low as I did when writing OP.

Thanks for all your help & support.

Hi,

Just updating this really in case it helps anyone else going through similar. I was diagnosed with Lichen Planus with coexisting vulvodynia in Feb and have been using Dermovate. Apparently I have some loss of inner labia and flattening of clitoral hood which for some reason has been the hardest thing to cope with mentally. No narrowing of the vagina though so apparently that's good.
Dermovate had to be used 2 times a day initially but now I'm down to using it a couple of times a month. I have accepted that I have days where I just can't wear underwear when it flares up but it is manageable at the mo and sex is fine with lots of lube!

Dear op, who did diagnose you in the end? Gynea or dermatologist? i've been struggling with my diagnosis for 6 months. I'm on amitryptoline but could have a similar issue to you. Been seen by gp's and gynea's but still no luck....