Handhold - bladder/urethra issues

[pickledwillies]

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.

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

@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.

@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?

@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!

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.

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

@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

@shaniahoo thanks so much! This is the first time I'm feeling hope in several weeks that I won't be stuck like this forever...I'll check out that Subreddit too.

Did you also get this post-urination urethral burning? It's weird, it never burns at all when I wee, but sets in a few minutes afterwards..and my urethra basically never feels normal. Guessing that can be caused my dysfunction. Not sure if I should attempt the relaxation exercises before I see a PFT, but might just.

Thank you so much!

I’d second pelvic physio. I had a UTI earlier this year that left me with pelvic dysfunction, in particular extreme pain after a wee. One session resolved 90% of the pain. I was fine after 2 sessions. I can’t even begin to explain the relief I got from the first session. Like @shaniahoo it was a pretty intimate experience but well worth it.

You definitely don’t need to have had children to have pelvic floor dysfunction. Many women have a too tight pelvic floor especially if you have gynae or bladder issues.

You should be able to find a nearby physio here https://thepogp.co.uk/patients/physiotherapists/

In the meantime if you have a basic spiky or lacrosse ball you can try sitting on it to see if it helps release your pelvic floor a bit.

I used to have terrible issues after sex which led to constant urethra pain. A dose of doxycycline is the only thing that prevents this. Might be worth a try if it is inflamed.

@pickledwillies yes I did, to the extent that if I'd gone a few hours where my urethra felt normal, I'd be scared to pee again because I knew that would reset it back to burning mode. It's a horrible, horrible thing. I'm optimistic for you that you've only been experiencing it since February even though that must seem like absolutely forever, but you can get it looked at before all the habits set in too much. Good luck to you and feel free to PM me anytime xx

I second the ball! I once turned up at a physio appointment with a burning urethra and she massaged my glutes really hard and that made it go away!? Muscles all have a knock on effect on each other I guess!

Not trying to dismiss your symptoms but if everything is coming back clear could it be anxiety or stress related? I had a period of time where I had horrific itching and burning feelings all over my skin, I was sure I must have something going on and was repeatedly back and forth to the doctors. Anyway, I was given sertraline plus counselling for some stress I had been experiencing and it did go away within a few weeks. I wouldn’t have believed stress/ anxiety could manifest in genuine physical sensations but in my case it did. I’m not saying this is true in your case but maybe a route to explore.

@shaniahoo thanks so much! That's very kind. I've looked up some physios and will pursue once this long weekend is over. My fear is that they won't find a hypertonic pelvic floor and then it's back to wondering what on earth it is!

Have you had a cystoscopy?

@CastlesinSpain no, I've not actually. The urogynae said he didn't advise this because it might exacerbate the pain. What kinds of things would this rule out?

Have you looked into interstitial cystitis at all? I had this, constantly thought I had an infection. Turns out lots of drinks can set this off. Mine went away when I stopped cranberry, coffee (even decaf) and orange juice. For other people there can be triggering foods, and some people find they need ongoing low dose antibiotics. I tried reintroducing coffee not long ago, sadly I still can't tolerate it 😥

Well, I am a lot, lot older than you, but my recurring "UTI" turned out to be cancer. I got fobbed off for 3 years before I was finally sent for one. But if your problem is caused by inflammation, they are right, it would cause more pain.

@Porridgeislife thank you! Feeling optimistic now that 2 people on this thread have said PFD can cause urethral burning. Can I check- was your pain specifically around the urethra? My bladder/lower abdomen area feel totally fine and ill admit I've kind of struggled to accept how PFD could cause a very specific post-pee burning. But given these comments will male it a priority to explore now! Thank you so much.

Yes definitely urethral pain. It felt like my general genital area was on fire.

Also, I have severe endometriosis & have had major surgery for it, and the post UTI pain was a very specific, much worse and frankly absolutely disabling pain by comparison. I was sitting in the bath for hours in the early hours of the morning trying to get it to back off after a night time wee.

@Porridgeislife thank you! Sorry you've also had to deal with endo though.

Did it take long for the physio to help with the urethra pain?

I got masses of relief from my first session and had 3 in total. I’d definitely try it - I’m evangelical about it tbh!

@Porridgeislife thank you! Definitely will. Did you have the pain for long before you went to physio?