Vulval pain, possible Cytolytic Vaginosis but no discharge and pH6 what else could it be?

[terceira]

I'm in my early 50s and have had constant unprovoked vaginal pain (feels like someone pulling my pubes) for 3 years at the entrance. Also several phantom UTIs - peeing a lot, pressure/pain/burn always negative dip tests and culture (I know they aren't fit for purpose) and they don't feel like other UTIs that I have had pre menopause that have shown up in tests.

I haven't had sex for 3 years.

About 18 months ago I was diagnosed with lichen sclerosus via biopsy but it appears to be dormant and doctors say it probably isn't the cause of the pain (I still do twice weekly maintenance dose of Dermovate). I do all the usual things for LS, cotton pants washed without detergent, emollient in shower, bamboo loo roll, pat don't wipe etc.

I've seen dermatologists and gynaes and not got anywhere. Most say it's neuropathic pain and amitriptyline and Pregabalin have been tried but neither worked. I have a GP appointment next week and I suspect she's going to try and persuade me to try gapentin but I'm reluctant as Pregabalin seriously affected my balance and the taper off was brutal. Duloxetine was tried but I can't tolerate SSRIs (serotonin syndrome) so we don't know whether it would have worked. Codeine is the only thing that helps but obviously I can't take that continuously.

Am on systemic HRT (Evorel 75+ utrogestan) plus vagifem for just over 3 years. The HRT predates the problem but I was put on vagifem because of the bladder stuff.

I've just had vaginal and urine microbiome tests done by Digital Microbiology and the only thing that came up is that I have a large amount of lactobacillus crispatus in both urine and vagina. The vagina figure was 384,000,000 on the swab and 98% of my vaginal biome is this bacterium, which DM say can indicate Cytolytic Vaginosis. However my pH is 6 and I don't have any discharge which suggests it probably isn't CV. The GP thinks the result is not significant and said that LC is a "good" bacterium and "we wouldn't treat this".

I suspect my pelvic floor is tight so I saw a pelvic physio last week but she didn't examine me, gave me some exercises (that I can't do at the moment because they make the pain and urge to pee worse) and I'm to go back in 2 weeks when she will examine me.

I also am on a low carb low oxalate diet and went full carnivore for about 6 weeks but it didn't help. I stopped caffeine (inc chocolate) about 2 years ago and I steer clear of sugary drinks and tomatoes.

If pelvic physio doesn't help I think my next port of call is to see whether I can get medical cannabis privately. If they refuse it I'm afraid I am seriously considering ending my life.

Does anyone have any ideas whether it could be CV, or what else it could be, or what else I could try? Does a smear test pick up CV - I'm thinking I might be able to get a private one done if so? Are pain clinics any good?

Thanks in advance and sorry it is so long.

@terceira
So sorry to read you are going through this. I have no experience to be able to offer anything other than a handhold and I’m bumping it back up the board in the hope someone else will read this who can offer more support.

I'm sorry to hear you are going through this, I think a private physio can make all the difference and you need to definitely be examined. In terms of the bladder and vagina are u still taking probiotics? Sometimes you can diversify with other lacto and bring the chrispatus into balance. There's a really good group on fb called beyond bv and lots of women have these problems so you are not alone

Thanks @HibiscusGardens The pelvic physio examined me last week, she says I have good contraction but I can't hold it for long so she wants me to persevere with the exercises and see her in a few weeks. She's suggested a couple of slightly different ways of doing them and I do seem to be getting a bit better at them. I was really hoping that she would find that I was tight and be able to release something but apart from the initial fear/tightness, once she'd got me to trust her and to relax she said it wasn't tight. It's been very painful since she examined me but I know the pain should go back down to its usual level in about 10 days. I suppose it can't do harm to try and get better at holding for longer but I am a bit despondent.

I'm not taking probiotics - I did a month of Optibac in the spring but it made no difference to the pain. None of the lactobacillus strains in Optibac are present in either biome - I will try and remember to put my results on the thread tomorrow. I think the high level of crispatus maybe because I drink a lot of milk and eat a lot of yogurt although I stopped dairy and eggs for a couple of weeks just after I posted this thread. I am back on cheese now but not milk or yogurt yet.

I'm not sure whether I should take more probiotics as I have read it can make things worse if it is CV. It's quite difficult to find any decent info about it - I'm in a CV facebook group but didn't really get conclusive answers about where to get properly tested for it. Apparently doing a bicarb sitz bath is meant to help but again I have read that doing so can cause harm if it isn't CV.

I will look at the facebook group you mentioned, thank you.