Hey everyone, I apologise if this is not the right platform for me as I have not been diagnosed with MS or anything. Basically in 2021, I had a private diagnosis of Ankylosing Spondylitis which they believed was causing my spine to fuse in places, creates widespread body pain and causes every single joint in my body to flare up now. Long story short, I tried to go back on to the NHS for treatment, but they demanded their own scans, at which point they dismissed the private AS diagnosis 4 times, and put it down to Fibromyalgia/Degenerative disc disease. At my last MRI in 2024, they claimed there were 5 slipped discs/disc bulges but there was “nothing they can do” for DDD so it was left to worsen. Now I am currently awaiting 5th MRI results after significant deterioration and have a low quality of life health-wise. In 2023, we were blessed with the birth of our daughter having been told I couldn’t have children at 15 due to possible endometriosis/diagnosed PCOS.
Anyway since 2017 I have suffered with urinary retention following my 1st episode after having my appendix out in 2017. I had a bad reaction to the general anaesthetic they said, and ended up with a catheter in at home for 2.5 weeks 
since then ive been back and forth with the urology clinic, where they diagnosed me with fowler’s syndrome and told me to start self catheterising in 2022. A couple of months after starting it, I suffered a really bad uti which then ended up landing me in hospital for Urosepsis. Shortly after recovering, I found out I was pregnant and everything was put on pause. Anyway fast forward to this year, and they re-started investigations - at the end of last year I had a cystoscopy which revealed a blockage to the urethra but no evidence of a stricture or scar tissue causing the blockage. They said there was extensive damage to the bladder lining due to the trauma of recurrent UTIs 2-3 times a month, and also like blisters or something from the severe infections.
After the cystoscopy, I then had the ultrasound which found retention of 250ml minimum but nurse said realistically its probably more like 300ml on a daily basis. Unfortunately, as a direct result of the cystoscopy, I then contracted pseudomonas for 6 long weeks with 5 courses of antibiotics. Eventually it cleared, and they were happy to resume self catheterisation.
Obviously, I am still feeling very anxious about developing urosepsis again but so far no offer of maintenance dose of antibiotics long term, and the urology consultant told me that if I refused to re-try self catheterising then I would be discharged from the clinic with no further follow up.
In the initial consultation, I suggested the possibility of endometriosis causing the blockage from the cystoscopy, but he quite literally laughed and said “yes well that’s why we don’t google our symptoms” and when pressed further about it said “its very unlikely I highly doubt that is causing it”
Anyway, I have just re-started self-catheterisation this morning, and after thinking I had fully emptied, then went on to release 450ml with the catheter - the feeling after it is indescribable and ive realised I had been feeling that pain and tension without realising for at least 5 months as the cystoscopy was probably the last time I fully voided.
Im currently waiting for another follow up with the urologist, where I’m hoping they are finally going to investigate what is actually causing the blockage 