UTI won’t go away can’t get help

[whyyyyyisitmonddayy]

Got my coil early 2023. Between 2024-6 I’ve had 4+ utis. I’m losing my mind. GP won’t help and won’t prescribe more than 3 day course which is proven in studies not to be enough. Theres no way it’s caused by STIs either. I’m definitely clean and so is my partner (I get tested automatic whenever I go in about my coil - which is frequent because it’s been a nightmare but I can’t take other BC).

Gp told me they wouldn’t help as “it’s now an emergency” 111 told me they couldn’t do anything, neither can a&e, only my gp can help as I’ve had 3 in the last 6 months

my car is broken down too. So I can’t even get to my gp anyway. Or a & e. I work night and my parents work regular hours so they can’t take me when I’m off work and when they can I’m working. I ended up lying to a pharmacist (told her it’s my 2nd in 6 months. I know it’s awful. But was in so much pain and feverish and I just needed help). My mum was able to collect it for me. She gave me 3 day antibiotics which haven’t worked. At all.

im terrified im about to develop pelvic inflammatory disease. Or that my uti is actually chronic and I’m going to lose my ability to have children. No one can help me apparently. I’m so lost.

I had a couple of years of constant UTIs at the same age and am reasonably certain it was largely due to lowered estrogen from PCOS. It could well be the IUD causing a hormonal issue?

Is there anything that triggers them that you're aware of? It isn't really anything to do with e.g. wiping the wrong way or other outdated myths GPs still come out with. Generally your urethra has to be irritated in some way for an infection to take hold, either physically (sex, childbirth) or chemically (bubble bath). Low estrogen makes this more likely as the tissue gets atrophied and less elastic. There's a "sleeve" of erectile tissue that lies around your urethra called the urethral sponge that protects it during sex. It's worth making sure sex is gentle & there is sufficient foreplay for this reason.

Or, you basically have the same infection & the bacteria has created a protective "film" around itself, which requires sustained treatment to sort.

D-mannose can be a good preventative and also helpful for existing UTIs but not for a chronic resistant infection. Bicarb of soda/ sodium citrate is ineffective despite being the base of most over-the-counter cystitis sachets and will just give you a stomach ache (this is based on e. Coli supposedly not liking alkaline wee. Actually it doesn't care and if your infection is caused by different bacteria they might actually thrive better in it).

Sorry for long message but I also spent years in pain and being ignored or told nonsense by GP and had to read a lot/experiment until I figured out what my problem was, haven't had one for about 8 years now! Good luck!

i never take baths - I just shower once a day. I don’t use harsh soaps either.

the coil is non hormonal so I don’t think it’s that but it’s really painful. I have no idea where to go from here.

She told me I’d know if I went septic which is so shocking. So many don’t notice as it gets you quickly and it’s very much a silent killer. I know women whose mother had a regular chest infection. 12 hours later she was in the morgue due to sepsis.

Yes I could. But I don’t process synthetic hormones well, so it would be trial and error for months trying to find the right BC after (if I even can). So if would be safer for me to go on hormonal BC before taking out the coil. It’s a whole mess.

Don't know if this is a controversial thing to say but why can't your partner use condoms (beyond just prefers not to)?

I would say you need to prioritise yourself right now. And I would want the coil out to remove that worry that it may not be helping.

You need to get the coil taken out imo.

Obv. not direct personal experience but have had this with a PICC line.

Once I had an infection they would have to take it out, The consultant said the antibiotics will clear the bacteria from your blood but will be not properly cleared from foreign objects where they hide away. Antibiotics work in conjunction with your immune system anything foreign to your body get in the way of that as well.

Even if its not that its just not worth the risk

This is shocking! I ended up in hospital with sepsis about 15 years ago as I had an untreated uti, (my fault for not going to the gp), ended up with acute pyelonephritis with sepsis. I don’t remember much but my family does. Stand your ground tomorrow and good luck!
ps - not pathetic at all 💐

This sounds awful and your GP is doing absolutely appalling dereliction of duty - as is the practitioner (which you should have been told you weren't seeing a doctor!).

Everyone else has already said all the medical things that should be happening/could help, but just to add in once you've finished this course of antibiotics its worth taking Uva Ursi tablets (it's bearberry, a traditional native American herbal remedy for utis). I had 6 UTIs in 18 months and real issues with the antibiotics not working (luckily had good docs) and my friend who is a medic told me to take this for a while after, and then about once a week and then also whenever I felt even the slightest tingle of a UTI. I haven't had a recurrence (touch wood) yet!

I had recurring UTIs when I had my non- hormonal coil changed. I'm not prone to them so it was odd for me.

Without going into too much detail, in my case it was an indication that it was fitted massively incorrectly. I have since looked at the literature and there is some evidence that a misplaced coil and recurrent UTIs are linked. It's worth getting a scan to check placement or simply having it removed.

Just another thought. And yes you absolutely can get it removed when you want to!!

Only a three day course and they won’t do it if you’ve had them recently.

OP, go to a walk in clinic and explain everything you’ve said here. Ask for a 14 day course of cefalexin. Then ask for a referral to a urologist - the waiting list will be a while. Once that’s sorted get yourself an appt to have your coil removed. You do not have to be at your GP for this. Make an appointment at a separate nhs health clinic, you can self refer and there is at least one in every city

take probiotics daily

take d-mannose daily

drink a glass of water every 2 hours and never go more than 3 hours without peeing even if you Ronny need to

Progesterone is an interesting one. I had years of IC/PBS following a series of UTIs but after I had the Mirena coil my symptoms of over 15 years disappeared overnight. But others have found themselves more prone to UTIs with Mirena.

I suffered from recurrent UTI s , tried D mannose which did nothing , tried an antibiotic after sex , which helped a bit but I was still getting a full blown uti every 4/5 weeks with some symptoms in between . I requested , and got given a long term prescription for low dose antibiotics , I took 7 months worth ( 3 months trimethoprim / 3 months nitro/ 1 month trim) and had no symptoms in that time . Unfortunately I then had to stop them because my liver function went haywire and I wasn’t sure whether they were affecting it however I’ve now been off them for over a year and had no issues at all , so I can only assume it was a chronic uti that has now been cured . So my advice , find a nice dr who will px long term antibiotics and get the coil removed , can you use condoms ?

I also cannot recommend D-Mannose enough. You can take it daily and I’ve not had a UTI since. I also give it to my cat on the recommendation of my vet. She used to get terrible cystitis 5+ times a year and has also been completely UTI free since taking it!

You can’t do that as it would be too much progesterone

We've actually just discussed this at weekend and he's going to go to the doctors this week. I have been prescribed Fluconazole (?) so will see if that helps!

So much sympathy for you. I had a UTI that turned to sepsis and caused my kidney function to drop to 25%. It recovered after a stay in hospital and lots of IV antibiotics but it was awful.
I then had 2 years of issues. Constant bladder pain, which was sometimes a UTI and sometimes not. I did see a private consultant in the end, who would let me drop off a urine sample every time i had the pain so that he could work out if it was UTI or IC. Turned out to be both.
Treatment was a week of the correct antibiotics (determined by the urine culture) followed by hiprex 2 times daily, and also vaginal oestrogen.

I've now not had a UTI since October and pain is significantly improved.

There is hope! Good luck.

(as an aside, my GP was happy to prescribe the hiprex to me - i've found it to be amazing)

My partner and I have used condoms before, and he’s suggesting we go back to them. But they never really worked well for us as they’re a shit BC. They have a high failure rate.

The copper coil isn’t hormonal. lol.

Condoms are up to 98% effective at preventing pregnancy if you use them correctly every time you have sex.
If not used correctly they’re 82% effective, which means around 1 in 5 women who use condoms for a year will get pregnant.
Incorrect use includes:

• putting a condom on after the penis has touched the vagina
• a condom splitting or coming off during sex

https://www.nhs.uk/contraception/methods-of-contraception/condoms/#:~:text=Condoms%20are%20up%20to%2098,penis%20has%20touched%20the%20vagina

You’re confusing “perfect use” with correct use. Same with “actual use” being “incorrect”.

I’m 21. I’m not willing to stake my career on an a) unplanned baby or b) have to go through with an abortion, which would mean time off and being an emotional mess. Ultimately, condoms are completely shit BC when compared to my coil which is 99.98%. I’m definitely not willing to stake 1/5 chance.

Stick with the coil then and hope it's not contributing to your UTIs.

You said the coil is "really painful" so I would want it out even just from that point of view as well as the fact you have suffered 4 UTIs since it was fitting, though that may not be linked who knows.

Anyway, I hope you get things sorted soon. UTIs are awful I know.

This. Though you’re very young.

id definitely contact the GP with a strongly worded email so you don’t get fobbed off. You need a proper investigation. Hope you feel better soon.

I’m moving GPs thank god. I’m so upset. They want to a pelvic exam but I find them so violating. I have no one to sit with me either as my boyfriend works full time and can’t get away. I want to cry.

If you tell them you’re nervous and request a woman, that may help.

I told a nurse I felt very nervous about an upcoming smear test and she gave me diazepam to take beforehand and was very sympathetic.

I'm very sorry for you, UTIs are so painful. The thing that helped put a stop to my recurrent UTIs was taking hiprex for about a month. It's an over the counter tablet which makes your urine very acidic so helps prevent UTIs. If I get a UTI now I take hiprex as well as/instead of antibiotics. It is about $30 AUD (I'm in Aus) for 30 tablets so fairly reasonable.

I know your situation is urgent but this could be something to consider longer term.

I suffered with persistent water infections, twice I ended up in hospital on antibiotic drip after they reached my kidneys. I’ve had two gynae referrals, the first they put me on a low dose anti b (one a day) the logic is it’s better than several high doses. Was fab while I was on it but when I came off (on GP orders) it started again . Id already linked the infection to sex, we are really careful and wash before, try not to transfer bacteria and I wee after but it was still happening. Second gynae prescribed long term anti b after sex. I haven’t had an infection since.