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!