Chronic UTIs clear lab tests

[Strawberrybloom]

Hi, I'd love to know if anyone else has had something similar. I'm 7.5 weeks pregnant and at 4 weeks I started developing cramps when urinating so GP put me on antibiotics for a UTI despite clear lab tests. Antibiotics helped but within a few days of finishing the course the same thing happened again so he gave me another week's course which again helped even better but within 48 hours of finishing that course I ended up in severe pain with mild urinary retention (hasn't had that previously) and had to go to hospital.

The hosp initially started me on IV antibiotics and I improved dramatically but a day later they decided it wasn't a UTI if labs are clear and did nothing about mild urinary retention and I ended up going home. My white blood levels were elevated and I had a temperature and was gradually getting worse so clearly had an infection.

Went back to the GP and got a different type of antibiotic. The back pain and stomach pain on urinating have improved dramatically but it still constantly burns and now today I'm struggling to empty my bladder fully. I'm at my Wit's end as the stopping and starting on antibiotics seems to have let it get more out of hand!

The GP said he won't be given me more antibiotics as it's not an infection. However I am certain it is but to complicate matters I'm immune compomised (treatment I'm on for my MS) so leaving an infection puts me at huge risk of sepsis. There's no guidance here in Ireland but I know the NHS says Chronic UTIs often don't show on lab tests but should be treated with long-term antibiotics. I'm seeing a different doctor next week and travelling to the maternity hosp I'm under (they're 2.5 hours away as local one won't deal with high risk pregnancies like mine)!

Would love to hear from others with chronic UTI in pregnancy not showing on tests. I'm at my Wit's end and feeling so alone and frightened

@Strawberrybloom

Sorry to hear you are going through this. I'm a GP and have looked into chronic UTIs in depth. You are correct; there are concerns that they do not necessarily show up on lab tests which can be misleading for doctors. The problem is the NICE guidelines which we follow in the UK actually don't recognise them- instead it would fall under recurrent UTIs, which is different (though there does seem to be a recent update that briefly references chronic UTIs). The best source of information I found is the website CUTIC, in case you haven't come across it yet. I really like the information sheet on this page which I have linked
https://cutic.co.uk/your-next-gp-appointment/

Also check out the raising awareness page on their website.

In a way your GP is not wrong as they are following guidelines and undoubtedly concerned about antibiotic side effects and resistance. What we do need a change in the guidance to make them clearer and better guide doctors.

So my advice is you could share this info sheet with your GP, for instance print it out and bring it to your next appointment. There is information about longer antibiotic courses. I think they may also choose to refer you to urology at this stage too, though the wait is likely to be long. Do you have private insurance or funds to go privately? If so, I would also consider this.

I suffered with this for years, went on six months of antibiotics and over time got a lot better. Then has about 8 years free of any issues.
In the last six months I've had 2 UTI (now in my 40s) and since then I'm stuck with the discomfort but tests are clear.
I cannot believe I'm back in this place. I was so well for so long. It just feels like my entire life has been dictated by this as it started in my teens and now continues again in middle age. I'm so worried about becoming post menopausal as my mum's didn't even start til then.

@RiderofRohan amazing thank you so much for that advice. I will definitely print it off and bring it with me. I am going to see my old GP in Dublin this week and she's brilliant so hoping she can point me in the right direction.

I developed a gamma globulin deficiency as part of my MS treatment and as a result my body is very poor at fighting infection. Even a sinus infection at one stage put me on 10 weeks antibiotics and nearly surgery until they decided to try one day of IGIV in July, which worked great. Unfortunately I was meant to have a follow up infusion a month later at my local hospital but they've still not scheduled it and my levels have dropped low again so I suspect this is also driving the infection.

My issue is that without antibiotics for even a few days, as soon as the infection starts climbing I develop a pseudo relapse (fake relapse driven by body fighting infection). It was so bad last week I was back using my wheelchair to get into hospital. So it is an added fear knowing that if I don't get this sorted my body declines rapidly. It's drummed into us to watch for sepsis on the meds I'm on but that's not much good if I can't get a local doctor to listen. It's so frustrating cause I know my own body so well and I know this is a UTI.

To answer your question yes I thankfully have private insurance. I had an ultrasound a few weeks ago as they were concerned about the fact I had blood in my urine for last 6 months (no symptoms at that time). But the blood has now vanished now I'm on antibiotics!

I'm also hoping to see my obstetrician next week too and he specialises in high-risk pregnancy and infections so hoping he can help. The urinary retention is getting worse for sure so just hoping I can hold on to get to Dublin on Tuesday as there's zero point attending my local hospital.

I'll see if I can get referred to a decent urologist quickly but if I don't get anywhere I've heard good things about the Harley Street Clinic in London where they specialise in Recurrent UTIs like this. Hopefully it won't come to that though. I had a miscarriage a few months ago so incredibly frightening about getting this infection under control!

@YukoandHiro I'm so sorry to hear you're suffering with this too. Could the doctor who put you on the six months of antibiotics last time do the same again? From what I've heard hormones definitely make it worse. I'm not sure where you're based but this clinic in London specialises in recurrent UTIs but unfortunately it's private and not covered by insurance so I'm afraid to find out the cost. If I don't get anywhere here in Ireland though I'm so desperate I will have to try and see them https://www.chronicutiinfo.com/treatment/conventional-medicine/uk-treatment/prof-malone-lee/

It's taken me years to get my MS stable enough that's it's safe to get pregnant and struggling with UTIs like this was the last thing I imagined happening. I really hope we both get sorted 🙏

Brilliant new podcast on CUTI, highly recommend if you're wanting to learn more about the little know topic of CUTIs

https://open.spotify.com/episode/54Thd0K0vAkSeJrZGoyz56?si=J_i5FHxPTL6gv-XVnmxc9A

Prof malone Lee has sadly died.