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!!

[Tiredmum100]

Gynae referal? Can you go through spire?

[PuppyMonkey]

OP, I had a terrible time a few years back and it all turned out to be sodding Aloe Vera toilet paper. Switched to normal toilet roll and everything improved.

“100 per cent Cotton undies only” is also my mantra these days.

[endofthelinefinally]

Have you tried topical oestrogen cream?
An oral antihistamine?
Just a couple of suggestions.

[endofthelinefinally]

See a urogynaecologist if you possibly can.
I can recommend someone if you are in or near London.

[Starstruck2020]

I found my ongoing issues cleared up when I took some zinc. Zinc is very good for tissue healing. What about making some wipes to use instead of TP?
And what endof says

[endofthelinefinally]

Also stop using toilet paper and keep a small jug in the bathroom to rinse. Buy some soft muslin cloths to dab dry.
Rinse cloths in boiling water and dont use washing powder, soap or fabric softener to wash them.
Use a good quality unperfumed barrier cream all around the urethra and vestibule.
Drink loads of water.

[QuestionableMouse]

What loo roll are you using? I find anything too cheap or scented/posh really irritates me.

[niqnet1]

Hi,

Thank you all so much for replying. It makes me feel less alone.

PuppyMonkey- been wearing granny cotton pants since my teens.

Tiredmum- yes I can ask for referral to gynae but wondering whether to just see my endo gynae or whether I need to see a specialist gynae. Someone with special interest in vulvas.

Endof- I've tried antihistamines but this was same time as thrush meds so I'm not sure what helped. I did see an improvement around this time. I've not tried estrogen cream and have a feeling my GP will need persuading given my age and fact they are denying the pill can cause vaginal dryness. I'm going to ask though. When I finally get a GP appt! I'm in North Wales so London a bit far. What sort of barrier cream do you mean?

Questionable- We have been using a budget brand of tesco called springforce for years. I have noticed I have less issues at friends houses so I think the toilet paper at home does exacerbate what ever is going on. Not sure if it is the actual cause but I have just had Bamboo Toilet paper delivered (thank you Amazon).

I'm also seeing my Women's Health Physio next week as she helped me so much post op after my lap and diagnosed non-relaxing pelvic floor. Wondering if something with my hypertonic pelvic floor is contributing also.

Basically I'm a mess.

[endofthelinefinally]

I wish I could remember the name of the barrier cream. It was on prescription and came in a large tub. Really heavy duty stuff.

[MickHucknallspinkpancakes]

Op I'm in a different country but I think you can get Dermed on Amazon- it's a wash gel in a pump dispenser and it really helps with itching around the vulva/labia.

Just to point out - it was prescribed to me by a gynecologist in a Swiss Clinic here, and it's not a vaginal wash. She warned me of using too much water, as it can actually be very drying. (I was rinsing a few times a day to cool and stop the itching but that was actually worse for me)

I was tested for thrush and BV but found clear of them and LS.

I was also given a daily lubricant gel which alleviated the itching rapidly and then twice a week I used a very small amount of a cortisone cream prescribed.

My sympathies op - I remember just parting the labia to apply the cream at the beginning used to split the skin from nearly top to bottom. 😬 🥺

[niqnet1]

Ok thanks endoof.

MickHUck- do you know what caused your issues? Was it low estrogen?

[niqnet1]

Argh. I can't get a Gp appointment until 17th Dec :-(

[MarmotMorning]

I had a similar situation to you in my early twenties. Lots of thrush and even between bouts things were not right. I started using vagisil pH balance and that really helped. You use it in place of soap and it helps get everything back in balance.

[VioletHornswaggle]

I had this on and off for most of my 20s and 30s when on the pill. Not had any issues since stopping using hormonal contraceptives. Every time I raised it with my GP she said it couldn't be the pill. Lots of random symptoms stopped when I came off from blood rashes to tiredness to vulval tenderness and frequent thrush.

Also what did help, weirdly was sex. I think it's the rush of blood to the area that helps. Plenty of lubricant helps also.

[ginghamstarfish]

Sounds dreadful OP. Does your GP not offer emergency same day appointments? Many do, ours does if you ring at 8.30. Find out if yours does and it might be worth trying for a few days, it sounds pretty urgent to me. Also if you have private insurance do they not offer phone consultation? Mine does (Vitality).

[MickHucknallspinkpancakes]

No I have the mirena and I don't think that helps but it was irritation like a kind of dermatitis.

[bonzo77]

I had similar and it was found to be dermographia. Ie very very sensitive skin that reacts to everything, and itching got worse the more it was touched / scratched. Etc. I was seen by gynaecologist and vulval skin specialist and had swabs, bloods and skin patch testing. All negative. Was not treated as thrush as it clearly was not that. Ditto BV.

What helped me...
No soap or anything down there. Just water. Washed hair over bath to avoid even shampoo getting there.
No panty liners / pads / tampons. I use a cup instead with usually no back up.
Moisturising with cetraben.
Cotton knickers.
No knickers over night or under skirts in summer.
I was also prescribed high potency steroid cream to use as required. Which has been rarely.

[endofthelinefinally]

OP if you have insurance, find a urogynaecologist and have a consultation. If they think you need a vulval specialist they can refer you on.
Life is too short.

[Barbeito]

Ring at 8:30 and ask for a same day appointment. If they ask you what it’s for just say, I’d prefer to tell the doctor. Be polite but insistent. If you ring back at lunchtime today your surgery might release some afternoon appointments

[LaChatte]

Mirena coil had similar effects on me, all cleared up once it was removed.

[niqnet1]

I managed to get an appt for Monday morning. I've been checking the online booking system like a mad woman and someone just cancelled one.

Planning on asking (demanding) referral to gynae and also some topical estrogen to try whilst I wait to see consultant.

Bonzo- I am doing everything you have listed and have been doing this well before these symptoms started.

Thank you everyone for suggestions to help. I am very grateful.

[TheGhostsOfPresidentsYetToCome]

Any changes to your washing powder or fabric softener? I have found I can use only one type now and can’t use soap anywhere on my body or it will run down and irritate my vulva.

I ended up in the GUM clinic with masses of clear discharge. All clear, they had no idea what was going on but I eventually worked it out and I’ve been much better for about 18 months now.

[Beansandcoffee]

Menopause? I have serious itching. I’m on HRT and probably need to increase dosage .

[niqnet1]

The Ghost- no changes to washing powder (tesco non-bio) and I don't use softener. I don't let anything run down near those bits either in the shower.

Beans: I hope it's not menopause. I'm 34 and on the pill.

[niqnet1]

Update: Saw GP today who said his money is on Vulvodynia however he did not examine me. He has given me a prescription for a strong steroid cream to try for two weeks to rule out Lichen Sclerosis even though sexual health said they saw no white or peeling skin. Only mild erythema around urethra.
He has also given me Amitriptyline "in case I wish to try it".

He's printed out a letter for me to take to my consultant detailing everything sexual health have tried. I am hoping my consultant provides more insight when I see him.

I'm willing to try the steroid cream but I'm not comfortable taking Amitripyline without a diagnosis from a specialist.

PS he said that my symptoms can't be low estrogen based as I'm on the pill. So he wouldn't give me a topical estrogen cream.