This is a long one, so thanks in advance for reading.
Beginning of July I had Schrodingers UTI - peeing frequently but was different to a normal UTI as I was actually peeing a good amount each time and it wasn't burning - just a constant urge to go. Also had the ****ly papercut feeling on vulva. Negative dip test at GP.
After MacroBid and a single fluconazole neither of which worked, and some very good advice on here, I was examined, diagnosed with VA and given vagifem and ovestin which I used inside and outside respectively every night. Told to stop the MacroBid which I did. The urinary symptoms cleared after a few days but the ****ly feeling didn't.
I experimented with various moisturisers - internally Sylk or Yes VM, externally Yes OB and coconut oil. These didn't help with the ****ly feeling and possibly some or all were making it worse. I really didn't like the OB and only used it once.
I tried to go down to twice weekly vagifem and the UTI like symptoms flared so again after advice on here I went back to nightly and it calmed. I had another flare after having sex which fortunately resolved itself after a couple of days. That was near the end of July and I haven't had sex since.
I started seabuckthorn towards the end of Aug and I seemed to be starting to produce my own moisture - whether it was that or the vagifem finally starting to work I don't know. I stopped using moisturisers.
Towards the end of August I started having one or two good days with no ****ly feeling and thought I might be turning the corner. Then a really bad episode of UTI like symptoms again and at about 2am on a Friday morning I was getting up to pee every ten minutes (and peeing a good amount). I stupidly took one of the leftover macrobid I had and it calmed enough for me to get some sleep. Spoke to a doctor by phone and she switched it to Trimethoprim and told me to phone in on Monday if no better.
It was no better and I now had pain in my urethra too so I went in and was examined and doctor said thrush in the bladder and took a swab, gave me 2 weeks worth of anti histamine and fluconazole. At this point I'd stopped using moisturisers and I also stopped the seabuckthorn, ovestin and the E45 wash cream I'd been washing with (back to plain water) so was only using vagifem. I did try Multigyn Actigel once but it burned for about 12 hours.
The urinary symptoms cleared and the the vulval soreness/itch seemed to get a bit better and then got worse in the second week and I developed a red angry rash on my vulva so went back in again, 2 GPs had a look, took another swab, said it was a fungal infection and prescribed daktacort twice a day. After about 5 days it seemed to start getting better then a few days days ago I noticed it was quite red again and very sore. And I've had UTI like symptoms for a couple of days too.
I have restarted the Ovestin as I thought it best - I stopped because I wasn't sure if it had given me thrush.
I'm also on HRT since May - Evorel 50 with desogestrel as the progesterone part. I've been on the deso for just over 18 months.
I've got a GP appointment tomorrow but I am at a loss here and very fed up. Do I ask to get referred to a vulval dermatologist, a meno clinic, a gynae, a urologist? I don't know what's going on, I don't think the GP does either and I have lost any faith that I am ever going to feel normal again. I am considering trying to finding someone privately which I can't really afford but I just want to get seen quickly by someone who knows what they are doing.