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.