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Original poster

UTI/Interstitial cystitis

4 replies

Melsy88 · 05/09/2025 08:20

At my wits end!
Have had months of UTIs and bladder pain. One UTI led to 4 nights in hospital with kidney function at 25%. Sometimes the bladder pain is a UTI and sometimes the urine culture shows no infection so the consultant thinks theres also some Interstitial cystitis potentially.
Currently 3 weeks into a 3 month low dose course of nitrofurantoin in case I have an embedded infection. However blood test has just come back with raised liver enzymes (ALT of 146) which I've read can be caused by antibiotics. Going to contact the doctor but wondering if I should come off the antibiotics.

Feel like this is never going to end. The pain gets so bad I don't sleep - paracetamol doesn't even touch the sides.

OP posts:
terceira · 05/09/2025 20:15

I'm so sorry. Urine testing on the NHS is a total shitshow. Interstitial cystitis isn't a diagnosis BTW. It's just saying that you have a painful bladder and/or urinary symptoms and they don't know why. AIUI it's often down to an underlying infection that the tests don't pick up, sometimes the bacteria hide in the biofilm on the bladder wall.

Have they actually cultured and tested and worked out which bacterium is/was causing it, or are they just randomly chucking nitro at it?

Can you afford to get a urine microbiome test done with Digital Microbiology, or similar, I think DM charge £249?

Also, how old are you? Women in perimenopause can often get bladder symptoms especially what seem like UTIs but never show up on tests, so it can be worth trying vagifem pessaries or similar. It does sound in your case though that there was an infection at some point that may have embedded itself.

Blueberry40 · 05/09/2025 20:19

I had this for a few years, really blighted my life for ages and was diagnosed with IC- 3 months on antibiotics completely erased my symptoms and it turned out it was an embedded infection and not IC at all.

I would say persevere with the antibiotics if you’re able to, obviously only if your GP feels it’s safe to do so.

Original poster
Melsy88 · 06/09/2025 08:01

terceira · 05/09/2025 20:15

I'm so sorry. Urine testing on the NHS is a total shitshow. Interstitial cystitis isn't a diagnosis BTW. It's just saying that you have a painful bladder and/or urinary symptoms and they don't know why. AIUI it's often down to an underlying infection that the tests don't pick up, sometimes the bacteria hide in the biofilm on the bladder wall.

Have they actually cultured and tested and worked out which bacterium is/was causing it, or are they just randomly chucking nitro at it?

Can you afford to get a urine microbiome test done with Digital Microbiology, or similar, I think DM charge £249?

Also, how old are you? Women in perimenopause can often get bladder symptoms especially what seem like UTIs but never show up on tests, so it can be worth trying vagifem pessaries or similar. It does sound in your case though that there was an infection at some point that may have embedded itself.

I'm actually with a private urologist and still not getting anywhere 🤦🏻
Yeah so about a month and a bit ago I got a UTI and went to GP. They gave 2 lots of different antibiotics which did nothing and then said I had to go to A&E if they didn't help. Went to A&E and got told they won't do anything and to go back to my GP ! Then got a private appointment and they did a culture and found out I needed Nitro. So took nitro for a week on full dose. Given the history of this happening a lot, the consultant then said to stay on a low dose of nitro for 3 months.
However I'm now reacting to it we think and my liver is all messed up. So Ive been told to come off it for now and we'll have a discussion on Monday.

I'm 44 so could be peri. However the cultures I have had have sometimes shown bacteria (sometimes not, which is why IC is being discussed)

OP posts:
Lara96 · 07/09/2025 12:26

Blueberry40 · 05/09/2025 20:19

I had this for a few years, really blighted my life for ages and was diagnosed with IC- 3 months on antibiotics completely erased my symptoms and it turned out it was an embedded infection and not IC at all.

I would say persevere with the antibiotics if you’re able to, obviously only if your GP feels it’s safe to do so.

Edited

Yes I was the same and was treated at Professor Malone Lee clinic at Harley Street. Symptom free for about 4 years now.

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