The Moody Bladder Hang Out

[feettothestars]

I thought it would be good to have a mumsnet space for anyone struggling with UTI/painful bladders. It may be that you've been diagnosed with interstitial cystitis, you've got vaginal atrophy, being treated for embedded infection or anything bladder wise causing you grief. It's a place to feel Not Alone.

We probably don't need any posts telling us to use D-Mannose or cranberry, weeing aftet sex or telling us to wipe back to front you can presume we have tried EVERYTHING

About me. I got a straightforward UTI in October that didn't go away easily (my story is in another thread called non-shifting UTI). Now in January I still have issues with pain but things are going in the right direction. I'm taking a health shop worth of supplements. I'm now using topical estrogen Vagifem and trying to get my HRT right as I do think atrophy has been at the root of my problems.

I got very obsessed with embedded infection but two broth cultures found nothing, I no longer have white cells or blood in my urine. I still worry it IS infection as the theory and Prof Malone seems to help people but I think my issue is hormonal. Antibiotics didn't help and gave me thrush and horrific shits. Cons was worried about C. difficile (Dr Anderson) and it's kind of eased a bit since I stopped. Getting the thrush to piss off has been a battle. Maybe I will end up back on the embedded infection route but want to give the HRT a chance.

I had NO idea about vaginal atrophy. But I had signs of weeing more at night over the summer. It's come as a real shock. I feel we need a corner of mumsnet as I have found it to be a truly horrific experience.

OP has anyone come to any resolutions with their issues? I’m getting ongoing symptoms and waiting on a urologist appointment.

Anyone have bladder pressure/ need to pee feeling only when walking? Had it for 8 months since my baby was born and still not got any answers. I'm fine fitting/standing/lying

How is everyone getting on?

I'm still stuck with the same symptoms in Urology Limbo waiting for my next appointment.

Struggling atm my urethra is in bits, like something is stuck I there after every wee, I have a appointment at the luts clinic in a few weeks, trying to hold my sanity together till then.

@Rubyyyy me too but mine is constant burning in the urethra made worse by weeing. I’ve tried all sorts but nothing has helped. Cystoscopy next month - really need this to go now it’s been ongoing for 6 months.
did yours start after a UTI?

So I've always been "prone" to utis and had many for years until back on 2019 I had one that after about 10 days of antibiotics wouldn't clear, it stopped showing infection apart from blood and pyuria on the dipsticks (even though I now know are like 50+ years out of date) so they refused to give me more antibiotics was told by urology it was anxiety related!! Been stuck like this since 2019 and it's basically been hell!

Sorry to hear you're both still struggling

I'm going to make some time to read through the whole thread but wanted to join.

I've previously had surgery to widen my very narrow urethra and I know it needs to be done again because my hellish symptoms are back. My symptoms are worse at night and I feel like my bladder needs to constantly be emptied, I can get to sleep because I feel like I need to pee and I can be up trying to pee around 20 times a night.

Sorry that so many of you are suffering 😣

Honestly it makes me so incredibly so many of us are suffering, and frustrated we get treated like idiots, I bet lots of us have been told to practise good hygiene wipe front to back ect ect!
I don't think people realise how mentally and physically draining it is to constantly feel like you have a uti.

@Rubyyyy have you ever had a cystoscopy? My consultant said even microscopic blood warrants investigation. Is it worth pushing back to try and get them to look inside?
I’m sorry you’ve been fobbed off with ‘anxiety’ that’s really hard and unfair!

@PRC yes I had one in 2019 was horrific and the doctor who was performing it decided to comment on my "nice and young vagina" honestly made me feel vile.

@Rubyyyy oh my goodness that’s so inappropriate, what on earth. I really hope you find a solution soon, I’ll let you know if I find any answers xx

Has anyone ever been referred to a pelvic health physio? Am asking out of curiosity mainly as I'm under the care of them at the moment and they have been fantastic. But I wouldn't have known anything about them if I wasn't seeing a normal physio about separated stomach muscles.
Had an appointment with the doctor about recurrent utis that were not going away but I had said to the doctors on many occasions that I didn't think they were utis and that something else was going on but she just said oh probably a sensitive bladder take antibiotics as soon as your symptoms start.
In the meantime I self referred myself to the physio and turns out it was my pelvic floor going into spasm. Just knowing what the problem was helped my symptoms no end and although I still get the odd flare up it is so much better than it was.
Just thought I'd put this out there as doctor's don't seem to recognise that the pelvic floor can have a lot to do with this area and that there are physios that are trained specifically for this.
Really hope this helps some of you.

@Kittykat2014 apparently it isn't available on the nhs in my area 😕

Just wanted to update for anyone who follows and is suffering.
Cystoscopy and ultrasound all clear, which is great but also frustrating as no explanation for my microscopic haematuria and urethral pain.
Been to a physio, thanks @Kittykat2014 as it turns out I do have a tight pelvic floor so I’m currently working on that.
Urologist has recommended amitriptyline and Replens to see if they make a difference.
Another mumsnetter has also said to try a high dose vit D, vit C, COQ10 and omega 3.
If I ever get proper relieve I’ll let you know what has worked!

No worries. Hope it helps. My physio explained it as when our bladders get an infection the pelvic floor goes into protect mode so it surrounds the bladder to protect it but sometimes it needs help to learn that everything is actually ok.
It takes a while but the exercises definitely do help. Have got my fingers crossed for you.

I feel like I’ve found my people 😅! I was wondering if any body would just be able to point me in the right direction.
A long, long story very short - I’m 29 F, my problems started when I was 17 I believe after a horrendous UTI, blood in urine the works. Same old same old the antibiotics temporarily worked, then it would come back to the point my urine samples were clear and low and behold their was nothing else to be done and I was basically left to get on with it. Since then I’ve always managed symptoms, I drink lots of water and really only water, minimal intercourse etc but I’ve survived and life’s been fine. Then recently this last month my symptoms have returned from what I believe to be from a horrible stressful year which can’t always be avoided!
I have slight urgency, I do not have frequency (I go four times a day) but my symptoms always start after I’ve had a wee, I do a normal wee, no pain etc, then within half an hour I get discomfort like I need to go again with urethral burning and general pain and discomfort. Then it eases again until lo and behold I actually need a wee.
Ive been referred to urology and have booked a private appointment with a women’s health physio for next week incase it’s my pelvic floor. D-Mannose doesn’t help because I don’t think it’s my urine BUT buscopan does slightly which implies my bladder is spasming but why! It’s getting me down tbh so any help would be very much appreciated as tbh I think we know more than most professionals out there! xxx

It sounds like you are on the right track. I get a feeling of needing to wee all the time when my pelvic floor is in spasm so It might be the pelvic physio will be able to help that side of things. There's videos on YouTube that explain it alot better than me. If you put in bladder pain syndrome they should come up

Hello, please can I join? I've recently been disguised with a stage 1-2 bladder prolapse and been given vagifem and a referral to women's physio. The vagifem has helped the leakage I was having after weeing so that's good. I'm not sexually active so I don't know how things are down there but the GP said things were very pink and consistent with atrophy.
The vagifem isn't as good now it's only twice a week but I've read on another thread that some women take it more often because they find the same. My fairly minor hot flushes stopped with the vagifem but are now back but not often at all.
This last week I feel constantly aware of my vulva with a mild burning sensation. I feel like I need to push something back in but the prolapse is mild the GP said so that makes little sense. I'm worried about straining to poo and think the 9 months I spent very constipated is what has triggered all this. Now if I need to strain I feel like I'm risking my pelvic organs falling out!
I've got some of those kegel balls and am trying to use them. I've seen a Women’s physio in the past and was told my pelvic floor was in spasm but I've had another child since then and I think he has really impacted things as he was my third.
I'm slim, active, walk around 6-12 miles a day depending on what I'm doing. Don't smoke, don't drink.
I feel somehow ashamed. I don't know why and it's stupid to feel ashamed but I am. I think the getting older is hitting me. I'm 47. I'm getting more and more white hairs, my neck is getting scraggy and now my fanny is failing 😩

@painintheargh oh please don’t feel ashamed, these problems are more common that you think!
I follow a urologist on Twitter and she says there’s no harm using the vagifem more often, if it’s helping I would. The oestrogen dose is so low and it’s localised.
Ive actually been using Ovestin externally and my urethral pain seems to be going…@LJH93 I'm only 4 days in but it might worth a go.

Morning, I haven't back read everything yet... running late,,! Saw mentioned a thing to pop in while excercising, got a cystocele getting worse,can you just buy them yourself off the peg so to speak? Have been waiting 7 months to see the gynae consultant,was told a year, but I know people who have been waiting for longer than that already.

Hello, any extra info on bladder prolapse/pelvic floor spasm/exercises/people to follow, would be gratefully received! I'm now wondering if this has been my problem all these years 😬 - pelvic floor issues rather than a UTI?? How can you tell if you have this?

Vagifem has definitely helped, but I still get that heavy, constant feeling that I need to pee sensation for a few days after sex.... I take a precautionary nitrofurantoin and it keeps symptoms at bay - but still have the massive anxiety that it could be the start of UTI agony!

Hi, did you find out what it was and did you recover fully? What cured you? Thanks.

Hi, same problem here, did you find out what it was, did you recover, if so, what treatment worked? Thanks.