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 get cystitis tablets online I just don’t mention that I’ve had it before
I always a minimum of 6 -9 tablets in my handbag

some pharmacy that I have used in the past
kings pharmacy
med express
pharmacia
dr Fox
Health express

I’ve bought hiprex on line and yes it’s really good stuff

Another recommendation for D-Mannose here. Life changing, I had such problems with recurring UTIs and D-Mannose has sorted it completely. Try to get the sort without any other ingredients. Amazon or health food shops have loads of options.

8g/ day for 1-2 days when it’s really bad, then 1g/day for maintenance. I had a bladder scan, so many antibiotics… this was the only thing that actually worked for me. Good luck xx

Update - saw a practitioner instead of a doctor which did concern me. She was quite rude honestly and fobbed me off about sepsis,, complications etc.

tool urine and gave me a week long course now. Refused referral. Told me it would take 2 years - one year for me to get sicker and another on a waitlist.

told me infection is in my kidneys now and they might be damaged. Rolled her eyes at my worry I could end up with PID. Told me nothing would be done really until I’ve a) been unwell twice more and given urine samples or B) if I sustain organ damage, become septic, etc.

I asked her if this dose would make me better. She shrugged. I said what if it doesn’t and she said well I don’t know! Just kept repeating that I need blood work to check kidney function

refused to remove my coil unless there’s evidence it’s causing it! I thought it could be removed when I want?

Is your other half treating themselves. This happened during one of my pregnancies and my specialist told my husband to treat himself as otherwise you'll go into a cycle of it.

that sounds horrid. Best wishes to you both

My parents have offered to pay for me to see a private doctor. Thank god.

They refused to refer me. Said they want to wait a year :(

I told her (a practitioner) I was scared I’d lose my ability to have children and that I’d get sicker. She told me that if I sustained organ damage she’d refer me then.

I feel so low. I’ve had some really horrible personal things happen recently too, so I feel like I’m losing the will to live. I’m so depressed. I just sat there crying silently while she stared at me all blank and kept saying I should ask the receptionist for a blood test.

This might not help you, but I had urinary problems for years and they'd end up causing utis and I ended up with a kidney infection too.

I did loads of research and listened to what others wrote on here and came to the conclusion that I was suffering from interstitial cystitis. I learned how to control it by restricting the type of fluid I was drinking and the symptoms massively improved and the infections stopped.

From what others said, many women have a permanent bacterial film embedded in their bladder lining which will grow depending upon conditions within the bladder. It can be treated by accessing specialist care (usually private consultant for IC) and taking weeks, if not months of antibiotics following identification of the type of bacteria present.

I control mine by avoiding tea, instant coffee, fruit juice, fizzy drinks, alcohol and anything citrus. These are my triggers. The tea and citrus are the worst triggers. I slipped up at Christmas by eating some tangerines. I started with cystitis then the urine started smelling. I dealt with it by taking the uva ursi for five days and it cleared up. I can't afford private investigations or treatment so control is all I can do.

Your bacteria might be persistent, but treatable by the NHS, but if not, see what you think about controlling the bacteria by other means. Some people also take D mannose as well. Cut out all your fluids and drink only Evian water for a week then stick to low irritation fluids like water, milk, herbal teas, redbush tea and see how you get on. Cut out tomatoes and citrus too.

They have to remove your coil if you demand it. Tell them you no longer consent to having it inside you. Some women remove their own, but you might not be willing or able to do that, which is fine of course.

This info may or may not help, but I don't know where I'd be now without this advice from the people on the health boards here, years ago.

I would ask to see another GP and go to your local GUM clinic and ask to see a consultant if you can as they are specialists in this area. Perhaps call before hand as then you can know who's available. Its a quick way to see a consultant or someone more specialised in GUM to help.

Go back to your GP and ask to see a GP specifically, ask for a longer course of antibiotics as NICE guidelines show is needed for repeated infections - push the NICE guidelines onto them as well. Also get them to swab for BV and thrush as it could be that before you had a UTI but not it very bad thrush as antibiotics can sometimes help cause. It's better to know for sure. As others have said you need to do testing for the culture at this point so that the antibiotics are as specific as can be.

If they think it's spread to your kidneys then push that to the GP for further referral for at least a cystoscopy (doesn't have to be a referral for urology yet]. Also emphasise the pelvic pain and say you want a transvaginal ultrasound - not everything will be related and it's better to check for fibroids etc.

NICE guidelines suggests clinicians can consider single-dose antibiotic prophylaxis (one antibiotic dose at a predictable trigge) or one daily to be reviewed every 6 months or so. They also say if symptoms persist or despite appropriate antibiotic treatment, referral for further investigation (ultrasound etc) should be done.

It could be Interstitial cystitis but with only 4 acrosss 2 years it's unlikely and Interstitial Cystitis just means chronic inflammation of the bladder, it has a variety of causes but crucially not infections. It's diagnosed primarily by ruling out infection and or tests like a cystoscopy.

What overall symptoms do you have? As IC causes persistent and chronic symptoms of urgency, pain when urinating.

I'd also complain about the nurse to the practice manager, the lack of knowledge or care, or plan is not okay when these infections have been so persistent. Also search up your local area, then ICB and complaints. The email should be available and complain to your ICB as well - detail everything you've said on here and more. Keep it calm, stick to facts only, not as much emotion and at the end of complaining to the practice manager and the ICB make sure you say what you want done e.g new appointment with a GP if possible someone with a specific interest in GUM.

Also, PID is not caused by UTIs but by chlamydia and gonorrhea which aren't treated and ascend from the vagina to the reproductive organs. So that's one thing to not stress about but being treated as you have it's obviously been quite dismissive to say the least.

I second the IUD removal as they can cause this sort of situation. If you absolutely insist and threaten complaints etc they should do it. I'm so sorry you are being treated so poorly. Xxxxx

UTI's are fucking awful, worse than thrush. I once had it so severe I was bleeding. I also remember filling the bath up with water to pee in it as it hurt so much to take a normal wee.
Are you going to Cyprus anytime soon or know anyone that is? You can buy them over the counter in pharmacies with no prescription.
Go back to the GP as you need investigating, all of these frequent UTI's are caused by something, I would not let it drop. The sachets don't do anything either, so sorry you are experiencing this.
How are you finding doing the degree? That can't be easy with these satanic symptoms. I finish mine in May, is it with OU? Hope you manage to feel better soon.

Thank goodness for that, I hope you get answers and good treatment quickly x

This is brilliant info thank you so much. My mum actually works for the IBC, I’d completely spaced. I’ll see what she can do in term of finding the right people to complain to. She even rang another GP who thought it was odd not to refer me yet. They’ve promised to pushed through my transfer to get me seen to quicker. I’m not sure why the woman who saw me didn’t point that out! That makes me feel better, although I know my kidneys are more vital

The degree is great! Thank you for asking. I’m at a Russell group uni so it’s a lot of pressure trying to balance work with study and with being sick. I’m dead on my feet - essentially when trying to secure funding for my PhD (2026 autumn start) at the same time. And moving house. Probably not helping me fight the infection 😟

This really shocks me as it must be a postcode lottery sometimes! Last year at 28 I had a particularly awful time of them, first treated by pharmacy with 3 days of nitro, then it persisted so I had to see gp, longer course of antibiotics, finished them and I got symptoms but really bad pelvic pain in my back, it was agony so I was scanned in ed for kidney stones by ct which was clear but they then referred me to urology as every single urine sample I had blood present in large quantities so I ended up referred through urology for a cystoscopy to rule out anything sinister. They were really thorough and good with the persistent UTI’s. I have no idea if the pain compares in men but in women, I only know too well how bloody miserable they make you!

Yes I get this sporadically and then start taking my pessaries, which I dont always take, it clears then.

Hi OP no advice but this sounds terrible. Just also to add my friend had a kidney infection and it ended up in sepsis, I’m appalled they have just fobbed you off

Please don’t use the word clean as that infers anyone who has an STI is dirty which increases stigma.
I wash most days 🙂

I have had a UTI for pretty much 4 years straight, including through pregnancy (when I was given antibiotics throughout that kept it at bay but didn’t clear it). It’s affecting every single area of my life but the NHS have literally thrown their hands up and stopped even investigating now. I just get told ‘it all looks fine’ and ‘there’s a lot of antibiotic resistant strains now’. So sympathies and reading the thread with interest.

Not all walk-in centres/standalone urgent care centres (those not located onsite with an Emergency Department service) have access to hospital laboratory services to send a urine culture for microscopy and antibiotic resistance/sensitivity testing, which is/are needed with possible first line UTI antibiotic treatment failure. Your GP can do this if they haven't already.

4 episodes of UTI-like symptoms over 2 years may/may not meet the NHS recurrent UTI definition given below.

"you keep getting UTIs (2 within 6 months, or 3 within 12 months)"

https://www.nhs.uk/conditions/urinary-tract-infections-utis/

All NHS services follow the same UTI antibiotic guidance pathways and 7 day antibiotic course/or second line antibiotics are not typically prescribed unless the history, patient group, or lab microscopy supports this or a patient has been seen by urology who support a specialist treatment plan for recurrent or chronic UTI that includes prophylactic antibiotics, a 7 day antibiotic course, and/or antibiotics different to recommended first line treatment.

Read the Patient UK information leaflet and NICE guidance below, see your GP again, or another GP at your practice and discuss what next steps need to taken, depending on your age, and any red flags ask about potential gynaecology involvement.

Signs and symptoms of pyelonephritis/kidney infection and urosepsis are linked in the NHS leaflet above and you can self present to A&E with these or call an ambulance with severe symptoms.

https://patient.info/womens-health/lower-urinary-tract-symptoms-in-women-luts/recurrent-cystitis-in-women

https://cks.nice.org.uk/topics/urinary-tract-infection-lower-women/background-information/definition/

https://cks.nice.org.uk/topics/urinary-tract-infection-lower-women/management/recurrent-uti-no-haematuria-not-pregnant-or-catheterized/

@whyyyyyisitmonddayy

If your pain gets worse, please present at a&e, I was given antibiotics by a nurse at my GP practice, and ended up being admitted to hospital with what they said was a very severe kidney infection, was there for a week.

I was disgusted at the treatment I had at my usually very good GP practice, but received excellent care once seen at the hospital (by the time I got there I was fast tracked to see a clinician in under 20 minutes because I was so poorly.

If your parents can support and advocate for you so much the better as I wasn’t able to do this for myself, my husband had to take over.

Support taking D Mannose as it has stopped my symptoms recurring (it felt for weeks afterwards that I was getting another one until I started taking it).

Sending you all the best - kidney infection was one of the worst things I’ve ever experienced (and I’ve had a lot of medical issues) - don’t be fobbed off by the ‘it’s just a uti, it’s not.

There's a girl on TikTok tag talks about chronic utis. Her account is chronic uti files. She talks about different treatments. I'd definitely check her out

This doesn't help you with getting rid of the uti you have, but get some really good pro biotics such as symprove and biokult.
antibiotics kill ALL bacteria including good bacteria. Killing off the good bacteria means you're higher chance of catching utis as there is no good bacteria to fight off the bad bacteria.
it works really well as a preventative but won't help get rid of an infection once set in

Could you lie and say you are trying to get pregnant and want the coil removed?