How on Earth did I get here?

[CatsAreLife]

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.

[Shoeysmum]

I've had similar problems to you although not the excrutiating pain that you describe.

For 6 months I had one urine infection after another and multiple courses of antibiotics. During this time I was unable to drink alocohol as even the smallest sip went straight to my bladder and caused the discomfort that UTI sufferers can relate to. My GP eventually referred me to a urologist who discovered, via an attempted cystocopy, that my urethra too was impenetrable. I did go back and have it stretched which appears to have resolved the original issue of multiple urine infections.

Along the way I was referred to my local continence advisory service where the leading nurse was more knowledgeable than many GPs - in fact she lectures to GPs on ladies bladder issues. I'd been put on oestrogen pessaries many years previously for cervical atrophy and the continence nurse changed the pessary prescription to cream telling me it was more effective. Funnily enough many of my GPs had commented that said pessaries should have protected me from UTIs. I heard this so many times that I pointed out that they weren't working!

Since then I've had no more problems although I often get a tingle 'down below' when I have alcohol, chocolate or too many carbs with alcohol being by far the worst offender. My alcohol intake is minimal so I'm accepting of the discomfort.

My advice to you would be to take the procedure to have your urethra stretched. Good luck whatever you decide.

[CatsAreLife in reply to Shoeysmum]

Thanks so much. I really appreciate your response on my first full day on this site. I may well go through with the dilation when eventually I’m called although I worry because I have low blood pressure after GAs and feel poorly. I’m certain mine is linked to the menopause and I experienced exceptional dryness post menopause making any kind of intimacy uncomfortable. My lack of confidence in the dilation is due to the doctor’s manner, sadly. He was very dismissive and gave me hardly any information. The nurses with me looked embarrassed and apologised for his behaviour. The pain I experienced was like a tooth ache in my pelvis and sometimes as you describe, a tingling sensation internally.

Can I ask, did you ever have discomfort when your bowel was full or have a sensation of burning in the rectum?

[Shoeysmum in reply to CatsAreLife]

Hi Cats

No, no burning sensation in my rectum or discomfort when my bowel was full.

Hope you get it sorted soon. xx