Constant UTI like symptoms for a month, no infection, no previous UTI’s, incredibly desperate

[doesitevergetbetter]

Apologies in advance for the long read, this is my first time posting here after reading lots of threads over the years that have really helped me. I’m at my limit with whatever is going on. I will try and give a complete breakdown of symptoms and everything I had tried in the hopes that someone can help me.

I will preface this by saying that I do have a nervous bladder, but that I never get UTI’s and if I have ever had one it would have been when I was a teenager (I am 27 and not pregnant).

I rang up the doctors on the 4th December as I was having weird tingling when I went for a wee, the tingling was in my lower right hand side, and didn’t feel like what I thought a UTI would feel like. He told me to wait 24 hours and if it didn’t resolve then to take the antibiotics. I ended up waiting the whole weekend, because I had no other symptoms other than the tingling and I didn’t want to use antibiotics unnecessarily and have to deal with all the side effects. Still no better by Monday, so I took the Nitrofurantoin just in case. Took for three days, I thought it was getting better, but wasn’t completely gone, and didn’t want a rebound effect, so was prescribed four more days. They sent off my urine for a culture test and it was clear.

After finishing these I started to get bladder pressure, so on the 12th December I went to the pharmacy to get some cystitis sachets, which seemed to help a little with the pressure, as well as drinking loads, but after I finished them it seemed the same as before. At this point I was only getting relief when I needed a wee. It sounds strange, but my bladder/urethra/whatever is the problem was so irritated when I was empty, that having a small amount of urine in there seemed to help. Still not burning symptoms, and I managed to get slight relief when urinating, and I was peeing a lot when I went. Urine was totally clear. No blood, no protein, nothing.

I ended up ringing the doctors again and saying that I started to have pressure and felt like I needed a wee really regularly, but that I was going a lot when I went. She told me to bring in another urine sample, which again, came back clear. I was drinking so much water that I was worried I was diluting the samples. My urine always seems to be very clear because I get very thirsty and drink so much water.

By this point I was very stressed about Christmas looming and doctors being closed, as well as not wanting to go near hospitals because of Corona. On the 24th they prescribed me Trimethoprim for seven days. By the night of the 26th I was so in so much constant discomfort that I rang 111 and paid for a private GP appointment. Both of them said that because my urine was clear it didn’t sound like an infection, plus the fact I had no burning, and was able to pass lots of urine.

By the 27th I hadn’t slept for two days. It felt like something was sat on my bladder, and every time I breathed the movement would make me feel intense pressure and like I needed to urinate. I was still getting relief when I went for a wee, but only momentarily. I ended up going to the hospital nearest me because the discomfort was so unbearable, paired with not sleeping for two days, I had a panic attack. (The whole experience was quite traumatic (underfunded hospital, people screaming in pain after being ignored for 10+ hours, no sanitizer or much covid compliance anywhere). It felt like there was something wrong, and I didn’t understand why nothing was working. I waited in A&E for nine hours, all bloods were normal, dipsticks normal (I know these aren’t accurate) on my period so couldnt say whether blood in my urine. Because of this they only let me see a hospital GP in the morning. She didn’t have any answers, and prescribed me seven days of flucolazole in case it was thrush irritating my bladder. I was very emotional at this point, and kept crying every time I spoke to someone. The pressure was so intense that I wasn’t eating or sleeping or even managing to distract myself. I couldn’t focus. My boyfriend, who is an angel, but struggles with MH issues, was finding it hard to cope.

I was in so much unbearable discomfort that I went back to another A&E the following night. I had said to my boyfriend that I was in so much discomfort that I didn’t know how I could carry on. They still had no answers, due to clear urine and bloods. So they have me Diclofenac suppositories to help with any inflammation, and dihydrocodeine to sleep. They also told me to stop taking the Trimethoprim, as it was day four and still not working. I ended up sleeping, but the dihydrocodeine slowed my bladder down so much that I was finding it hard to urinate, and it was only working by knocking me out. I would wake up in the night and still feel how uncomfortable I was, it didn’t seem to do anything to get rid of the discomfort.

My mum marched me back to the same A&E the following day, convinced I had another kidney stone (I had a suspected one previously, but that was agony), she couldn’t understand why they kept sending me home without doing further investigations (she's a nurse). Doctors kept talking vaguely about referrals, then I was told that referrals were paused because of Corona, and I can barely make it through the night. I had a doctor who was very sweet but kept getting sidetracked with my gynae problems (polycystic ovaries etc) and pushed for a gynae referral. He explained that because I was walking around okay and my urine/bloods were clear that they couldn’t scan me. At this point I was getting very stressed about being in hospitals multiple times with everything going on, but really I was/am desperate.

I’ve been researching like crazy, infections that aren’t picked up my culture/dipsticks, antibiotics not working, gynae things pressing on bladder, Interstitial cystitis (I have never had UTI problems before, this came on suddenly and is not affected by what I eat or drink).

Nothing brings relief. Literally nothing. I’m going out of my mind. It has developed into more classical UTI symptoms now. Feeling like I need a wee all the time and when I go I have to push and hardly anything comes out, and it feels really tight down there, like I'm pushing against a wall to try and pee. The constant pressure on my actual bladder is less, but the feeling like I need to wee all the time is there even when I'm currently going. It feels like I just need to do a massive wee to get it all out. But my urine is still clear, I have dipsticks at home. My mind is bouncing from thing to thing trying to figure out how to cure this. Do I need another round of different antibiotics, or is there really nothing there? This is so abnormal for me. And all I’m doing is crying and laying in bed and knocking myself out at night.

None of the doctors have an answer, they keep talking about referrals far off in the future when I’m so uncomfortable I can’t even distract myself. Now I’m worrying that I have urine retention, my flow was very strong before and now I have to push to get it out. I have a GUM appointment on Monday but know they won’t find anything, A&E can’t do anything for me so what’s left? I mentioned about getting a private urology appointment, because my life has completely imploded this past week, but the doctor said that it will be pushed back because of Corona. I have tried D-Mannose for a few days but felt absolutely no difference (should I keep trying with it?), I’m only drinking water and eating plain foods, taking OptiBac probiotics. I’ve ordered Uva Ursi though slightly confused about needing acidic urine to fight infection, and them making it alkaline. I’m still taking the oral antifungals. The only other thing I can think to mention is that the doctor said that my kidney was slightly off baseline (I think this was the terminology) in my blood test, but she didn’t seem overly concerned. I’m kicking myself I didn’t ask her to elaborate but was desperately trying to get a referral (they seem only interested in referring me to gynae). I tried to get an answer from the doctors today but nothing. I do have excessive thirst regularly and my urine is always always incredibly clear but I think they would have picked up diabetes or anything like that on my bloods. Last month I did ask to be referred back to Gynae because I was having period type pains all month, but I’ve never had anything like this before.

I think this would be more bearable if I could get any sort of relief. Or if I felt like I was certain I wasn’t suffering with an infection. Do I just need stronger antibiotics for longer? I'm so terrified of all these chronic IC stories, I can't imagine having to live with this feeling all the time. Deep down it feels like there's an infection, but surely that would at least respond to some sort of antibiotic or something? I wondered if it was urethritis and needed some different kind of antibiotics, but I'm not sure how I'd find out. I'm so desperate for something that will take this feeling away. I just need hope.

I've had this twice in my life. The first time I did keep getting bacteria in my samples but it wouldn't go away with antibiotics. Ended up seeing a private urologist who gave me two weeks of a really strong antibiotic that they don't normally like to use (can't remember what it was called now but started with a c...) and it went away and never came back.

The second time it happened nothing ever showed up in the tests. I ended up having symptoms in and off for THREE YEARS until I paid to see a private gynae in London and she said it was pelvic floor tension. Saw a womens health physio about 6-8 times and it went away.

I still take d-mannose every day and having had a lot of recurrent UTIs in the past I get one probably once every two years now.

If I were you I would book a private gynae scan, keep going with the d-mannose, buy yourself a blood sugar monitor kit on amazon to check your blood sugars (about £10) and also book to see a womens health physio.

In the meantime, try some deep breathing exercises or meditations. Have a look on YouTube. I was unconsciously gripping with my pelvic floor muscles due to the pain, which then turned into chronic pain due to the gripping etc. The first thing the womens health physio did was get me to breath deeply to relax my pelvic floor. You might also find it helps to lie on your back and bend your knees, then flop your legs out to the side, prop your knees with pillows if that's more comfortable. Its a good position to relax your pelvic floor. It can't hurt to try while you're waiting on the other things.

And try not to Google as you will only find horror stories that will make you panic (speaking from experience!).

@cherrypie790 I'm sorry you're going through this too, have you managed to get any relief?

This was signalling alarm bells to me as well, my dipsticks that I have at home do also test for glucose and they're always negative. Do you think the blood tests at the hospital would pick up diabeties? Or is that more specialist? I have an awful immune system.

I read somewhere that D mannose only works if the bacteria is E.coli, but I don't even know if I have bacteria....it's all guess work

@gifmenu did you try other antibiotics before the nitrofuratoin? Since I've already taken it and it didn't seem to help I think I would have to try something else. Sadly the doctors have already started to write it off as IC even though I've only started having symptoms recently and they have done next to do investigating. It's interesting that you still had some remaining discomfort afterwards, at least it wasn't as bad at the constant urge to urinate, I would give anything for a less intense version of that

@lambo88 thank you, I really appreciate it, it's hard finding doctors who will listen atm, they have so much going on

@doesitevergetbetter, I personally would give another antibiotic a go. I appreciate one needs to be careful with antibiotics etc. and I would only do it when prescribed by a medical professional, but it's worth a discussion. Chronic UTI specialists put people on high dose antibiotics for a long period of time and from what I've read, many of them get better. My case is complicated due to trying to conceive (currently over 6 weeks pregnant), but I was lucky to have doctors who were happy to try different antibiotics though my choice is limited. I always improved on antibiotics, but symptoms came back after a couple of days of stopping them. It's been 4.5 months of this (no bladder problems before). Have been on constant antibiotics since mid November now and on my 3rd lot since a couple of days ago as the previous one seemingly stopped working (bad symptoms and for once my dip test came back bad). Pregnancy complicates things (been on antibiotics throughout so far), but have to trust my doctors and hope for the best. And yes, treating thrush regularly too, and hope it will all sort itself out soon. Keep pushing and if you can, go private as it seems it's nearly impossible to get anywhere with NHS at the moment, cannot see this changing before spring/early summer. Good luck!

I'm still not fully "normal" but the awful feeling of pressure has gone and there's just a general level of discomfort, especially after I've passed urine. I'd ask your GP for a HbA1c test - it measures the sugar levels of your blood cells over 3 months. Once I was diagnosed and medication brought my sugar levels under control, my immune system staged a massive recovery. I was permanently ill before. It's worth eliminating.

@Isolatedizzy I'm 27 but think my polycystic ovaries imbalance my hormones, down there is always very dry which I think is quite unusual for my age. Docs have looked down there since I've been dry and no one has ever commented on it, but maybe I should bring it up? I wonder if something like that would cure the current problem or would help to stop recurring issues?

Hi, I am so sorry to hear you are struggling to get the right support/answers. I had very similar between the Ages of around 22-27 on and off with no real pattern, being in constant discomfort and easily going for a wee twice an hour every hour including through the night. Never ever any burning sensation or any infection showing when doctors tested my urine. I was initially told it was ‘all in my head’ and that I was just imagining it basically! I must have gone to the doctors 10 times over a 2 year period and persisted that I was completely miserable and had periods of not being able to sleep before anyone took me remotely seriously and that includes a trip to a&e out of pure frustration. I had a cystoscopy after a 9 month wait which came up clear. I also had a full sti screening which came up clear just to rule out any issues from that perspective. I haven’t had any serious flare ups in a couple of years now and didn’t experience any issues when pregnant with my little boy. It was all very strange with no answers what so ever and I know just how frustrating and draining it is when you know something is wrong but you aren’t getting any further to solving the issues no matter how many times you visit the doctor or how differently you try to word it to get them to prescribe the right thing to help ease the discomfort.

Please don’t give up looking for answers, and try to find any ways possible to ease the discomfort whilst you look for a cure!

You COULD have interstitial cystitis, even 'though that possibility obviously terrifies you - very understandably.
The main method of diagnosing this is for a urologist to perform a cystoscopy.
I was diagnosed with IC 5 years ago, after years of pushing and pestering my GP, and this was pre-Covid!
It does not have to be a life sentence.There is no cure but it can be managed by diet changes, supplements, and medical procedures and drugs. It's finding what works for you, and there's lots of info online.
I feel my IC is under control for now, but of course you may not have it at all!

@doesitevergetbetter yes I also had pivmencillinam, but thus didnt help. I had three days nitrofuratoin I felt improved but not right so this was extended to 7 days....still felt rubbish the two separate courses of pivmecillinam which didnt give much relief at all followed by 7 days of nitrofuratoin and then the 3 month prophylactic course. My GP said she had had Good results with prescribing the 3 month course.

My urine never grew anything in the lab. I was referred to urology who thought it was IC and I followed the IC diet for a while which I think helped with the I inflammation once the infection had been properly treated but I can now eat a normal diet.

I was advised by someone on mumsnet after I had been diagnosed with IC that is doesnt exist and it will be a urine infection that has not been treated properly.

I really feel for you I was desperate when I was in the throws of it and I really hope you can get some relief.......I wouldn't wish it on anyone.

@Catsneezies see, I keep wondering if it's an infection going under the radar, and whether I just need some strong antibiotics, but because I haven't had a scan not knowing whether I should see a private urologist or a private gynaecologist, I'm so desperate I would but I wouldn't easily be able to pay for it.

I wonder if pelvic tension can have such quick and severe effects, especially after some vague UTI type symptoms all month. But you're totally right with your plan of action, gynae scan, possible urologist (if it's a bacteria infection I don't want it to go untreated for even longer), and I do need to follow up this excessive thirst mystery, maybe I can just take my own blood sugar.

These exercises sound great, I do get a lot of pelvic pain anyway (which I'm now wishing I had instead of this!) I will give them a go! Google has me convinced that it's never going to get better, I have been constantly reading mumsnet threads looking for an answer

@Wireless77 did you have to bring up the idea of trying another different antibiotic? My doctors have kind of been like, those two didn't work....oh well, that's it. I wonder if I have to push for it myself. I feel very much like I have to figure all of this out on my own, and the doctors really aren't investigating anything. I hope that your problems all resolve, congratulations on your pregnancy! I think I will push to go private, NHS just seems to be at a standstill (understandably).

@cherrypie790 I'm glad it's got a bit better, hopefully the discomfort will go in time. Mine always feel a lot worse after urinating. I will ask my docs about this test, I worry about throwing too much into the mix as they already seem a bit tired of me going on about these UTI problems, but I know it's important to check for diabetes with these symptoms, thank you

I’ve been a patient of Professor Malone-Lee since 2018. He has changed my life. It’s the best money I have ever spent after 6 years of hell and being told that because samples come back from the lab clear I can’t have an infection. A check on a fresh sample at The Harley St clinic showed I had a severe infection that had been getting worse as it had not been treated. I’d been for scans, MRIs, cystoscopy, bladder stretches, bladder installations at my local hospital trust and nothing did a thing. If there is any way you can afford it please go. The quicker you get the right treatment the quicker you will clear what is probably a chronic infection. Mine is a long long job as it had reached the stage where my bladder was full of ulcers .

@doesitevergetbetter, when it all started for me, the urine sample grew 2 different types of bacteria. I then had an allergic reaction to the one antibiotic that was supposed to treat both (it had worked for me with no problems in the past). It then got so bad that I went to A&E and cried to be given another antibiotic even though the dip test was negative at that point. They did not want to, but eventually gave me Cephalexin. This seemed to work, but symptoms came back after finishing the course. My GP then agreed to give me a week of broad spectrum strong ones. These also helped until the symptoms came back again. I then went private and my urologist has been happy to try a couple of different ones to try to find the right one. It's been tough as samples often don't grow anything due to having been on antibiotics, or they grow different bacteria that require different antibiotics. I have advocated for myself a lot, but have also been lucky to have doctors who were willing to listen. I agree, NHS has different priorities at the moment and it is very understandable, but it's still not an excuse to let non Covid patients suffer. Noone would go to A&E unless in absolute agony, would they?

@Jellybum2019 did you ever find out the reason for all your symptoms? Or is it still a mystery?

That's exactly how I feel, no matter how I try to explain it or word it, it never seems to hit home. Thanks so much for all your well wishes, I will try and find the answer

In the meantime cut out dairy.
My 7yo had a painful and twitchy bladder for yonks, which we have now understood is a symptom of her dairy intolerance.

It might not make the difference, but if it does it will do so in a couple of days and then you will be happy again!!! I feel for you, as it is the worst type of pain this.

Tonnes of other good advice, I hope you get it sorted.

Professor M-L says there is no science that backs up IC being a condition in and off itself. He says it’s inflammation caused by chronic infection. He is appalled at the invasive treatments and tests women are undergoing and all the stuff marketed at relieving symptoms such as D-Mannose, cranberry, special diets etc. He said anything they do is placebo effect as there is no science to back up that any of these things can have any bearing on a chronic infection. The worst thing is the idea of 3 days of antibiotics. He says this is causing so much harm as very few infections can clear in this time and short courses just suppresses them only for the symptoms to flare back up again in a week or so’s time. He has spent 37 years researching and treating chronic uti and is desperately trying to change the way UTIs are diagnosed and treated.

I don’t think he is seeing new patients now as he is semi-retired but the doctors who work at his clinic are all trained in his protocols and are as passionate about getting women with what he calls “The UTIs from hell” better.

@gifmenu after being told it was IC by urology did you go back to your doctors and ask for more antibiotics or did they recommend you have them? I have wondered about asking them to give me more or a different type, someone mentioned cephalexin I think....though you say that nitrofuratoin worked for you even after having it previously? I was worried that it wouldn't do much for me if I had already had it. Then I start questioning whether it's urethritis and needing a whole different type of antibiotic....

@ConcertinaWorm I'm so glad that you're doing well, I've read a lot of similar stories and know that I won't settle with an IC diagnosis, especially with zero investigations being done. I pushed back against a doctor saying it was IC over the phone and she said she had never heard anything about the idea of it being untreated infections, it was very frustrating. I have no idea how much it costs but I will give them a ring as I'm desperate

You're right, I went to A&E three nights in a row out of desperation. (Two of those because I wasn't given any answers) And I really, really didn't want to do that during a pandemic. Did you ask your GP to keep trying antibiotics? My GPs are definitely not offering them up when I talk to them so I wonder if I really have to push for them? Then it's hard knowing if you're taking the right ones and how long to take them for. But I don't want to keep leaving it, even with negative tests it feels like something is there

@tinseloatcake I can easily try this, thank you for letting me know. It really is an awful feeling, but I feel so overwhelmed with wonderful advice

You are right not to be fobbed off. I bloody well wish I hadn’t been so compliant and nice about everything. But even if I had it seems that there just isn’t the will to change how infections are diagnosed and treated. The initial appointment at Harley St was £250 and follow ups £200. I’m on a small fixed income and could have done without having to pay privately but I swear it is the best money I have ever spent. As soon as my first appointment ended I felt in safe hands and as if there was a way out of the misery. I’d been on a waiting list for CBT as I was so depressed by years of my life being so miserable by my symptoms and being made to feel a hypochondriac and a nuisance by the hospital and GP. A rigid cystoscopy at my local hospital showed I had something called cystitis cystica - where the bladder wall is full of ulcers. It was diagnosed as a condition in its own right by the consultant. At my first appt at Harley Street Professor M-L said it isn’t a condition. It’s just what a bladder looks like after years of infection left untreated or haphazardly treated. Which is pretty shocking.

@ConcertinaWorm I wonder if it's worth trying to get some different antibiotics while I'm waiting to be seen (I'm sure there's a long waiting list). I feel slightly worried about leaving it in the interim because it's not lots of infections coming and going, it's just the one and I'm anxious about it travelling up while the hospitals are under so much pressure. I'm so sorry you had to go through all of this, but so glad that you are being treated properly now. It it horrendous how much women have to suffer and how little about our conditions are actually known. I mean, why does every doctor I speak to bring up IC, and it's only speaking to real women suffering that you find it's actually untreated infections? Why isn't this common knowledge amongst doctors? It's awful

Another thing I didn't mention is that while all this has been going on, I've been getting intermittent tickling/itching type feelings across my lower abdomen, which I've never had before, it's really strange, not painful but under the skin.

Everyone's replies have been so helpful and I am so grateful, I think I need to push for a different kind of antibiotics while I get a private urology referral and gynae scan. It feels quite scary deciding what medicine I need and taking it into my own hands, it just feels like a lot of guess work