I haven't posted on here in a while but this has been a long term condition I have been suffering with for a few years at this point. It has put a strain on my relationship - which has (thankfully) lasted throughout this whole ordeal; but I need to get this sorted and would like someone's thoughts on what to do next.
- Itchiness and burning all over my groin - especially around the opening to the vagina, the clitoris, and my anus (noticeably more after going to the toilet). The itching around my anus has got really bad in recent months with it being very painful to walk, stand or do anything sometimes. I have mentioned this to several doctors where one diagnosed me with thrush that had "spread to the back passage" because she said it looking inflamed. I applied cream and used a pessary tablet but there was no improvement.
- Peeing is painful right on the opening to the urethra, sometimes with a lower stomach cramping associated with it.
- Back pain (especially when on my period and after peeing) particularly on the left hand side of my lower back which sometimes feels similar to the kidney infection pain I had a few years ago.
- Skin irritation with comes with the itchiness, I thought this may have something to do with the type of detergent/pads I use which had fragrance but it has lasted so long and I have this irritation even when not wearing any underwear! I end up getting red and swollen down below especially on the opening to the vagina.
- Painful intercourse (dyspareunia), it has become almost impossible. I have been tested frequently for STI's and have had a long term boyfriend throughout this as mentioned.
The worst symptom is the irritation and itchiness. I can't live with it anymore and I don't know if maybe it's my pubic hair that is irritating, should I get a wax or something? Shaving has been irritating in the past. Also the painful sex is the worst part of this for me emotionally. My mental health has really suffered because I am a young 21 year old girl at university with a boyfriend and it's really put a strain on our relationship - and we've been together almost 4 years.
- I've been referred to gynecologists and urologists. All my recent swabs, examinations, and urine tests have come back clear and unremarkable.
- My GP found candida in the summer of 2018 from a urethral swab which I took fluconazole for, for about 2 months with no change.
- In November 2018 I had a biopsy which came back with nothing in particular but they did notice inflamation of my urinary tract. My urine has been clear since my last suspected UTI in 2017.
- I had an MRI in July 2019 which came back clear.
- In September 2019 I went to see a new gynecologist which diagnosed me with vulvodynia which she prescribed me amitriptyline for. I had been using that up until recently going as high as a 30mg dose but with no improvement at all.
- Since September 2019 I have been having a cystistat which is a instillation of fluid into my bladder to support the lining of my bladder as they couldn't find anything from the biopsy or MRI so thought this might help. I have seen maybe a little improvement but by no means are any of the above symptoms "cured".
I'm sort of at my wits-end and want to cry and scream all the time about how I'm feeling and how uncomfortable I am. What I would really like to know is who to go to next. I was wondering if it was worth going private and what kind of specialist I should see. Also what kind of tests I could ask for? Like should I get another blood test and more swabs/ urine/ stool samples? I really want to see this treated in the new year and I would be grateful to anyone who could help!
Thank you for reading,