Urethral Syndrome? LONG STORY
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I have been suffering with urinary problems for over 5 years and I'm only in my early 20's. Please could someone advise me on what to do I'm at my witts end with everything!
I started having multiple UTI's from a very young age , around primary school time. I seemed to grow out of this for a while until I was around 15 when I had a bad UTI and had to be put on a drip and antibiotics. Since then I have been in and out of the Doctors, sometimes up to 3 month with what the doctors thought were UTI's. Quite often one lot of antibiotics wouldnt work so Id have to take the course then go back for a different lot until we finally found something which did.
As I progressed into my 20's I would go to the doctors for what I thought was a UTI to be told I had no bacteria in my sample but I would still have symptoms such as dull back ache and excrutiating pain when going to urinate. I have been for multiple ultrasounds to check my kidneys and to check I empty my bladder properly and everything is normal.
Eventually around a year and a half a go I went for a cystocopy under local anaesthetic but it was too painful for them to do. I ended up having a cystocopy under general anaesthetic and they found I had some bladder ulscers which they burnt away and that my uretha was inflammed. After this operation I was in a lot less pain when urinating and my qualify of life felt better. I had an outpatient appointment with a urologist who told me there was nothing more they could do, they didnt know what caused it and Id just have to keep having the operation if it happened again. After around 6 months it the pain became bad again and I went through the same process of the doctors giving me antibiotics and nothing working for months. It progressively got worse and worse. At December 2019 I was taken to A & E for an emergency operation as my Uretha had become so swollen I physcially couldnt urinate, my bladder was filling up and they were worried it would damage my kidneys. At this point the pain was so bad I felt like I was going to pass out or be sick everytime I tried to urinate. They tried to put a catheter in me whilst I had gas and air but it was still incredibly painful and I ended up having to have a catheter put in under general anaesthetic. I stayed in hospital for days.
After leaving hospital I have been put on a low dose of trimethoprim every day and Ive had significantly less pain when urinating although I always have some pain to some level of degree. The trimethoprim seems to be working wonders as I havent had a UTI since. I am supposted to be having a follow up appointment around now with the urologist but due to COVID-19 this has been postponed.
HOWEVER, fast forward 6 months again and the excrutiating pain is back again, hooray. Its been getting worse for around 3 weeks now to the point I dread going for a wee. I have cut caffeine and alcohol from my diet to see if this helps. I always urinate before and after sex, I drink plenty of water. I also take D-Mannose to try to further prevent UTI's. I have had STI and STD tests which have all come back clear. I feel so fed up. I am going to try a course of accupuncture when it is save to do so after COVID-19.
Does anyone have any advise on what I can do to make this better or is anyone else in the same boat? Im thinking I have Urethral Syndrome caused by all the previous UTI damage. Please help !
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