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AIBU?

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Original poster

Handhold - bladder/urethra issues

82 replies

pickledwillies · 29/03/2024 16:22

I hope this won't come across melodramatic but it's genuinely taken over my life since the beginning of Feb. I can't eat or sleep and struggling to concentrate at work. Starting to have scary intrusive thoughts. I have a chronic health condition so dealing with further unrelated health issues has just put me over the edge.

I had an uncomplicated UTI in early Feb which was treated with multiple rounds of antibiotics. It does seem like it's cleared but I'm left with this burning urethral pain which is worse after urinating (and also passing stool, somehow). I'm trying to get medical help but I've already seen a urogynaecologist who didn't really take me seriously and just said it's inflammation and will pass. But it's not getting any better. I also feel like I have to strain to get the last bits of pee put. I'm still on antibiotics as the last doctor I saw prescribed a month's course just in case but it's not helping and I don't actually think it's an infection anymore.

I'm taking hiprex, d mannose, cranberry, drinking tons of water, etc. I've had my urine cultured and it's clear. Tested negative for STDs in6llw cluding ureaplasma and mycoplasma. Had a clear smear test.

Currently looking into pelvic floor dysfunction and low Oestrogen (but I'm only 32 and never had children or been on hormonal contraceptives).

I'm trying to find a good, preferably female gynaecologist who will take me seriously and be able to help. I'm in London and have accepted I'll likely have to pay privately. Does anyone have any suggestions?

The burning urethra pain is driving me nuts and I'm so so scared it won't ever go.

Any experiences, advice, suggestions welcome. I feel so desperate. Couldn't even get out of bed today.

OP posts:
shaniahoo · 29/03/2024 17:46

@pickledwillies I've had one child by C-section, probably isn't related to the issues in my case. I've always done way way too much just-in-case weeing, like getting up for a second wee straight after getting into bed that sort of thing, so I've trained my bladder to feel the urge at the smallest amount. UTI causes stress and more muscle tension though and that's what set me off so much worse. There is a subreddit just called PelvicFloor, I've found that really helpful and there's all sorts of people in there not just mothers, with the same problem.
My physiotherapist is also a postpartum specialist in fact she deals almost exclusively with postpartum and mainly incontinence but she was still able to help me!
Internal work = pretty much fingering 😆 but very medical and respectful of course. I have areas of my vaginal wall that sting when she presses on them, and those are the ones that lie against my urethra on the other side which is how she knew there was a problem there because those areas shouldn't hurt to touch. She massages them like you'd massage any knotty muscles and it helps them release.
Pessaries - I've used Canesflor, and also Biocare Intrafresh, I think they're both on Amazon.
I remember you said about having to force the last drop of urine out and I understand that urge but one of the first things my therapist got me to do is relax on the toilet and when the stream ends just get up and don't try to force yourself totally empty because that pushes on your muscles and activates them even more. It took a while for that to make a difference but I never have to force my urine now x

tangledupp · 29/03/2024 17:29

This happened to me a few years ago, I had a real UTI which was treated with antibiotics but the burning wouldn't go away fully. No explanation for why this happened but the UTI was in August 2017 and I remember it went on until about April 2018, so unfortunately I had these symptoms for a while but it did get better. I can't really advise on how to get rid of it as mine just resolved gradually with time, although I found it was a bit better if I drank a lot and kept my urine clear/pale yellow. You have my sympathies OP as it was a horrid experience and I couldn't stop thinking about it at the time, and these days I'm very insistent on going to the loo frequently/flushing out the system as I believe it was holding my wee in too long that caused the initial UTI for me Sad

Guttedme · 29/03/2024 17:28

Bless you, many hugs, could you ask for Amitriptyline for use as a muscle relaxer x
I get sleep with this and a heated pad for lower back.

Could you ask your GP to do a urine test? It’s the only test I find my GP will carry out as my joke of a surgery urgently wanted to get hold of me this week …to demand I hand in another urine sample in 4 weeks!

I’ve only started looking into private scans myself and did pick up a copy of the metro yesterday and for the price of a scan in the ads towards the back you can also get a basic full body mri for £199 in London.

Original poster
pickledwillies · 29/03/2024 17:18

@shaniahoo gaaah sorry one last question! You can probably sense how much I'm panicking here...

The probiotic pessaries - can I ask where you got them/which brand? Wondering if I can find something on Amazon.

Thanks so much!

OP posts:
Original poster
pickledwillies · 29/03/2024 17:15

@shaniahoo by "internal work", do they...put things inside you etc? Not that that's an issue, but just so I'm prepared! Is your urethra burning mostly OK now?

OP posts:
Original poster
pickledwillies · 29/03/2024 17:13

@shaniahoo thanks so much for your response. Mind if I ask - have you ever had children? Just because the (not very good) urogynae I saw said PFD is uncommon in women who've never given birth, but I'm not sure I really trust what he says.

Can I ask how you went about finding a good PFT? I live in NW London and have googled "pelvic floor therapists" but they all seem focused on post-partum women with urinary incontinence etc., which doesn't really fit.

OP posts:
shaniahoo · 29/03/2024 17:08

Hiya, I had the same last year - two real UTIs in a row but after that I kept feeling like I was getting a UTI again, but I wasn't. My GP suggested probiotics and also vaginal probiotic pessaries to try to rebalance my flora after the antibiotics, and that may have been part of the problem and it improved but I still had these episodes where I felt like I always needed to pee, urethra burning etc. I had read about pelvic floor dysfunction too so I found a pelvic floor physiotherapist and she diagnosed me with hypertonic pelvic floor. It seems I'd had a tight pelvic floor previously but the added tension from the UTIs had set it off worse. She does internal work on me, so massaging pressure points in my vagina. In my case it's the muscles around my urethra that are very tight. And she has taught me pelvic floor exercises which I do everyday. I am doing much better now and when I get periods of my bladder feeling "activated" I don't panic because that makes it worse and I do my pelvic floor relaxation exercises and it helps it go away. You said pelvic floor dysfunction was your next port of call anyway so I hope you find some answers and your situation sounds very similar to mine (especially because it's worse after peeing/passing stool). I understand how you feel and this put me in a very dark place last year as well, it's impossible to take your mind off your bladder when you're worrying about whether or not you're getting another UTI xx