After a lovely 6 mile walk with a friend in November 2020, I experienced sudden lower back pain and what felt like cystitis. My urine was found to have no infection but red and white blood cells were present. I was put on the first of many doses of antibiotics which brought some relief but nothing long term before the pain returned. My urine didn’t burn and I had no pain on passing it but the pain in my bottom, legs and when my bladder was full was hard to cope with. More tests, same results, no long term relief.
I subsequently had a scan on my kidneys, ovaries, bladder etc and all was clear. I had blood tests to detect cancer which came back in the normal range.
I found it hard to sleep and needed to empty my bladder regularly through the night. I saw a specialist who looked at my results and suggested a back problem but referred me for a cystoscopy to check the inside of the bladder before discharging me. In March this year (2021) the specialist was unable to perform the cystoscopy because he said he couldn’t fit the instrument into my urethra so I would have to return under general anaesthetic to stretch it. He said I probably had a bladder that wasn’t emptying fully and he left the room leaving me with all his implements scattered on the bed beneath me. I later experienced excruciating pain where he had tried to push the instrument( the width of a pencil) inside me. I’m currently still waiting for any follow up. I understand that there must be many people whose needs are more urgent than mine.
In May my GP prescribed oestrogen cream. (telling me not to read the side effects- which I of course did) and mentioned ‘irritable bladder syndrome’ linked to post menopausal problems for the first time and told me to look it up. I discovered a condition called interstitial cystitis or IC which seemed to fit many of my issues. I researched it and from US forums discovered how diet can significantly irritate the bladder and I started to eliminate certain foods: tomatoes, fizzy drinks, alcohol, chocolate, caffeine- all the good stuff. This had a huge impact on my symptoms. Although I have had flare ups periodically since then, I feel at least some relief and form of control over what’s happening to my body. I have never had bladder issues previously.
Is there anyone out there who can empathise and offer any advice about how to manage a similar condition long term? I feel like I’ve been forgotten and am really reluctant to undergo a GA if it’s not 100% necessary.
