No UTI but so uncomfortable!

[neighbours123]

Posting here for traffic. Feel so fed up.

Prone to UTIs, but do all the right things and usually only get one every couple of years or so now. Felt one coming in after sex a couple of weeks ago, had the three days of antibiotics and felt OK straight after them.

However, since then I’ve developed discomfort around my urethra after peeing. It’s not exactly pain, but it is uncomfortable. Pressure on the area or hot baths help.

Nurse practitioner today didn’t know what it could be and when I dropped a sample in it was negative for an infection.

I haven’t felt right for two weeks now and it’s really getting me down. Has anyone had this? Has anyone got any suggestions? Is it all in my head? I feel so fed up and miserable. It’s almost like an urge or sensation that I need to go, but I don’t…

The one thing that has stopped me having repeat UTIs is that I dumped as much of my stored oxalate as I could.

I used to drink a lot of tea and eat a lot of oranges as well as eating without any knowledge at all about oxalates. Since learning what the actual problem was (purely by accident) and then researching, I have dumped the oxalate.

It took about nine months start to finish with the odd small wave of dumping even now, three years later but the difference to my bladder as well as my general health is amazing.

If you think this could be you, have a look at Sally K Norton's YT videos or read her book.

Dumping it was a very uncomfortable experience but I knew I had to keep going as things would improve. I went back to drinking a cup of tea here and there just to reduce the dumping to a tolerable level but in general, I accepted I would be peeing cloudy painful urine and have the crystals come out of every orifice and make a few orifices of their own on the way.

Sally was bedbound as a result of oxalate storage and the pain as a result of living on chard and spinach etc. as a kid. I too had generalised joint and muscle pain and constant UTIs but not now. Getting rid has been life changing.

Day 5 of antibiotics yesterday and I dipped again. Given it until today and drunk lots in case it was the sneaky two cups of breakfast tea I had, but have had to ring 111 again and off to out of hours at 1.30pm. Losing the will

“Felt one coming on after sex”…try YES lubricant (oil or water-based are available, the former OTC) not just for intimate times. There’s nothing worse than these symptoms. I hope you feel better soon. x

I’ve just self referred to the pelvic floor physio team too.

I paid for a private physio

Sorry cut off. I have a thread as I’ve been struggling since January, tried loads of tests etc. I found the physio useful to know what it wasn’t as well as what I could do.

Sounds daft but this works for me. A friend had her GP recommend it years ago. I drink Robinsons lemon barley water at least every other day. No UTIs for over a year now.

The nurse at the GP practice recommended Robinsons Lemon Barley water to me as it’s ph neutral.

have you been tested for sti’s recently?

Professor Malone-Lee was an expert in recurrent UTIs. Research found that for some UTIs, the initial infection would clear but the bacteria had also burrowed into the bladder lining, and when those bladder cells shed, you’d get UTIs recurring. I’ve had long term low dose antibiotics twice to sort this out.

Angela Kilmarton is also someone who is very knowledgeable in UTIs (incl interstitial) and written several books about it.

UTIs make you feel utterly miserable so anyone here suffering has my sympathy.

@neighbours123 how are you now ?
Was a magic solution /cause found?

Hi, thanks for checking in. You might regret asking!

It’s been awful. I’ve had seven sets of antibiotics in total. I was then given Hiprex too. Then I had some bloods done including a CA125 which came back at 90 ish (range is up to 35). So I am currently on a two week wait ie. Cancer pathway.

I also found out I was pregnant and then had an early miscarriage (GP took me off Hiprex at this time and said didn’t think I met criteria for it as no culture showed an active infection and giving me Hiprex could be masking something like overactive bladder). Had my investigative scan during said miscarriage. So painful and quite traumatic, they had to get another sonographer to come in to help get the images they needed as there was so much bleeding it was proving difficult. That was nearly a week ago, and I am still waiting to hear.

Symptom wise, I still had discomfort after urination, but I started Hiprex at the same time as the last round of co amoxiclav. Since stopping the Hiprex I am feeling better on that front, miraculously. I am worried it will come back though, as it did get better and then worse again with some of the antibiotics.

My two week referral was based on the blood test and my symptoms, so I need to ask them about those issues when I get scan results.

I did self refer to physio as I wonder if it could be an overactive bladder (this was before the GP said as much). Got an appt with them on Thursday.

Oh no ,you poor thing ! Have you got people in RL who can offer support ?
What a lot to process !
It's just gahstly going through tests for cancer and waiting for the results .
I'm crossing everything for a non cancerous reason for your raised CA125 ..could it be related to the pregnancy ?
Sending hugs

Oh no, how awful for you. So sorry you are going through this!

dod u ever find out what this was. Going through the same now it’s awful

I ended up being diagnosed with deep infiltrating endometriosis. I had originally been referred for bleeding etc in June 2024. My MRI in Sept 2025 revealed the endo. I was told it was bowel and pelvic only, urology wise looked fine. In December 2025 I was in agony and weeing blood which triggered an urology cancer referral. Got the all clear mid Jan.

Finally had my endo excision surgery a week ago, and unsurprisingly, they found my bladder and ureters were covered in adhesions and also tethered to my other organs alongside my ovaries, uterus, bowel, pelvic ligaments and side walls.

If anyone is having repeated UTI type episodes and getting clear cultures I would encourage you to look into endo as a possibility.

I have had bad periods for years, but I have had a worsening bad back for about three years. When the physio saw the MRI she said no wonder my back wasn’t getting better, it was the endo in my ligaments making me think I had a bad back. I’ve had random spotting for years also and general pelvic pain on and off which I had been putting down to nerve pain for a herniating disc in my back.

I have also had issues getting and staying pregnant going back as far as 2017. Despite being under gynae a few times on and off in this time, it took them nine years to diagnose me.

I have thought I had a reasonable pain threshold as I recovered well post c section with just paracetamol and ibuprofen, I wouldn’t say I had no endo symptoms but probably because naproxen on prescription covered a lot of it for 5-7 years I didn’t complain, and I should have. Turns out it’s not normal to need prescription meds to cope with your period, which makes me feel a bit stupid, but then I think we (women) are regularly gaslit. My surgeon was very shocked to see all the urinary endo when he did the surgery. He said based on MRI he thought I was in the worst 10%, and post surgery he has upgraded me to the worst 2% (he’s been a medic for 36 years).