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.

It’s so sad to read all of this and I can assimilate with lots of it. My bladder and vulva rule my life - it’s all I think about and yes @feettothestars I spend hours trying to find an answer or someone who could help.

My broth was done by focus but not through dr Anderson. You can get any go or doc to sign it off if you pay.

I have seen dr Gill at Harley street and my sample that day had 0wbc and 0 pus and basically zero everything but she said I had an embedded infection and put me on nitro which I haven’t taken. I also have some hiprex but I have only tried a half dose of it and it burned my stomach and bladder - horrid although I took it on an empty stomach so think that probably didn’t help !! That was a couple of months ago and I have pondered taking again but a bit scared.

I had a bit of a moment before Christmas when it all got too much. I was hardly eating and had lost a lot of weight as just terrified that everything would make it worse. I have relaxed that a bit now and apart from tomatoes which I still avoid I haven’t noticed any difference but then I don’t drink or have tea or coffee anyway.

I wish someone would just give me a definitive answer then at least I could focus on how to treat - it’s the uncertainty which is a nightmare.

Big hugs to all

I’ve had these problems since 2019, I’m 30 and diagnosed with ic but nothing has helped, tried to get in to see dr Anderson but apparently she’s not taking on new patients.
I’m honestly at a loss because I’m not sure if it’s my bladder or vagina or both tbh I get worse from ovulation to period and then it’s relief when I’m on (hormones!?) nhs urologist keeps talking about widening my urethra because I sometimes feel like something is trapped in there.

Tbh the whole thing is driving me insane and ruining my life, scared to have sex, scared to swim, scared to live normally tbh x

@Applebobber sounds like we have almost the same story! I don't know - if no sign of infection at all, I find this not wholly convincing. My UTI cons was determined it was embedded infection on symptoms alone - is that what you were told? I mean you'd think a zero culture would suggest that it's all ok in there! I know the theory is that the biofilms hide the bacteria but something about it doesn't fully add up to me. Mine came on so fast and I'm in peri hell - it could have been a stubborn infection and residual inflammation plausibly. But it's hard to drop the fear of it - I too have lost a lot of weight feeling overwhelmed with what I can't have and being so ill on cephalexin and being terrified I have an infection in there waiting to pounce on me like a lion. There are some UTI websites that just put the fear of god into me, live UTI free being one of them: it basically gives little hope on how to actually live your life UTI free but has lots of stories and theories of horror - have you seen it?

There are some good critiques of embedded infection theory that made me feel better. I think it doesn't consider our hormones/histamine/pelvic floor tension etc etc and I can't see enough people who have gone through the gruelling treatment who are totally totally cured after they stop the antibiotics. To have one theory and not acknowledge that it could be complex seems to lack nuance. Not to mention the treatment which is not for the faint hearted. I'm so sensitive to ABs I think I would be seriously ill on the dosages I've seen been given.

So. I think it's good to talk this stuff through. I am anxious about my health and the embedded infection stuff has made me alarmist as unwell with worrying.

@Rubyyyy welcome to the bladder gang. It's a shitter isn't it? Did it all start with one UTI? Mine is better when I'm on my period too. I've read this in a few places. When hormones are lower? The fear stuff is dreadful. I'm scared to eat a chocolate bar or have a bath or to do much really. Stretching your urethra doesn't sound very fun it doesn't feel like the treatments menu is one I want to choose from really aghhh. How is this not better understood?!

@feettothestars yes we do sound similar. Mine actually started after I tried utrogestan vaginally - doc gave me wrong stuff - for fertility treatment and I had a god awful reaction and the onset of bladder symptoms.

What are your symptoms? Mine is urge to go to the loo - some bladder discomfort / pressure but no burning. Had lots of urethral stuff in the beginning but now not so much but it does get twitchy sometimes. Things have improved since it started with some ups and downs but it’s still there.

I agree with you. I am on some Facebook groups and they are terrifying but to be honest the treatment options are either barbaric and very invasive or long term antibiotics with all the issues that go with them. If you have no other hope then i guess you go with it.

I have the nitro in the cupboard but haven’t taken it because I am not 100% convinced however if things get worse then I may well do - I don’t know.

I am trying to resolve awful vulval soreness first !! The joys.

@Applebobber well I'm here with you going through it with my nitro in the cupboard! I came off the Facebook groups, they were making me unwell with anxiety. I know rationally that forums are where people
go who are suffering (aware of the irony of me being here) but the people who get better and move on aren't around so all very skewed. I am not going to do that with this thread. That is my promise to readers of the future. Almost all threads end with no conclusion. So you have to guess there was a good outcome but who knows.

And yes, if I get desperate enough then maybe I would brave it but I am worried I'm just someone who won't be able to tolerate the treatment. Hiprex also sounds vile. Cost me a lot as well. A med for UTI that feels like a UTI is a bit rotten.

My symptoms are being very aware of my bladder when full, pressure and sometimes ache. I am drinking loads of water which I'm scared not to but of course then all the weeing. Frequency is better but not fixed and urgency sometimes. And then the evil pain I think in my urethra and general vagina area after some wees. It's not burning so much as being kicked between the legs. The estrogen cream literally burnt me when I was recovering from antibiotic thrush from hell so I've been batting thrush/chemical burns and fanning my fanjo lying on the bed crying. That does seem better on vagifem and after three courses of diflucan DEAR GOD my local little boots must wonder what the hell is going on with me. So that's all nice overshares. I've wondered if I have vulvodynia sometimes.

Oh and I'm taking oral utro which I took in ivf. Symptoms are worse on the weeks I take it. Horrible drug! I took it rectally for ivf as it burned me then vaginally. Not sure if that's an option for me now. Not that that was a laugh.

I think you are right to come of groups although I cannot believe people who do get better would just leave without supporting others or sharing stories as they know how desperately positive news is needed and how much it would help but perhaps that’s my mixed logic.

I still read them - am doing it tonight - but I shouldn’t as it just makes me feel that my life as I thought it would be is over. No travelling, no dirty weekends away without the kids just being scared of everything.

Jesus I have low depressed myself even more !

@feettothestars I’ve had so many utis over the years till I got one In 2019 that just wouldn’t go away, my samples kept coming back clear (apart from blood traces) and was told no infection get on with it!
Had swabs done at gp all fine but it doesn’t feel right at all down there! When I have a bad flair it feels like my urethra is really swollen and it’s a struggle to wee, it doesn’t burn whilst going but it’s uncomfortable afterwards. I sometimes have what feels like a bubble/air trapped in my urethra that I have to move around to try and push out, it’s all very odd and I get strange looks from urology when I try and explain.
I’ve also got endometriosis and want to conceive- god knows how I’m going to manage that so I feel like from the waist down I’m just a mess

Hi to everyone suffering with bladder issues. I don't have any issues but my late DM had interstitial cystitis for 12 years. She was told it was all in her head, she was bringing it on herself by being anxious, they refused to believe she was only painfully passing a few drops of urine and insisted she must be incontinent, it was unresolved trauma from an abortion decades earlier etc.
I can't offer any advice since this was decades ago and I would hope treatments have moved on since then. She did find acidic foods and drinks aggravated it, also stressful situations would cause a flare up.

I'm posting this because you said you never get to hear success stories. Once diagnosed my DM had her bladder stretched and scar tissue cauterised about a dozen times . BUT in 1992 she was one of the first people in the country to have her bladder removed and replaced with a false bladder made from pieces of her bowel sewn together. For her the operation was a complete success, once she'd recovered she went to the gym every day, then when my DF retired they went dancing every day. Apart from passing calcified stitches occasionally she had no further bladder issues.
I don't want to give anyone false hope. Of the half dozen women on her ward who had the same op at the same time she was the only one who was completely successful. But she had 18 pain free years before she died.
I hope this gives somebody some hope and wish you all the best of luck xx

Me 🙋🏻‍♀️

Had sepsis from UTI twice and since then have recurrent infections and over active bladder.

It's so depressing sometimes! Started Mirabegron a month ago and it helps a bit but just needed more antibiotics. D mannose also seems to help.

@thaegumathteth welcome and sorry you find yourself here - not a fun club but hopefully we can offer each other support.

@3beesinmybonnet thank you. It's an extreme story of hope but I'm glad she had respite from this dick of an illness.

@Applebobber I highly recommend muting the groups. I do believe they are skewed populations - there MUST be many many other people who suffered but didn't get as far as to need a forum because they recovered. I have health anxiety and excessive worry so found those groups very early on. I was the same with infertility actually but I have my son now and don't recall ever going onto forums and reporting my hopeful ending.

My other theory is this. Should I recover fully, I will always be too scared to say I have? Or I'm not sure I'll ever think I'm much more than in remission? Not sure if that makes sense. I would imagine that many many of Prof Malones patients who have been on years of antibiotics never really do dance off into the sunset feeling fixed even if they are - there is a big psychological aspect to this, if really effects you.

And yes I too am fearing that I will never travel or go away for me and DH weekends again. Or have sex tbh. This devastates me. As does not eating freely.

@Rubyyyy I am so sorry that you are suffering too. My GPs I feel have failed me. I was offered two short courses of antibiotics and refused any more in spite of still being in acute cystitis phase which is how I ended up seeking a private consultation. I was offered antidepressants just two weeks into this whole saga and told I needed to stop being anxious and clearly didn't have an infection. I still can't believe a GP would put the phone down and know that someone is out there, suffering, not working and offer no solution other than 'crack on'. A later GP said he would precibe long term nitro if a bug was found and that I could be referred to a urologist if I wanted but the wait would be long. It all feels barbaric and I'm sure if they had suffered the same illness the answers would be very different.

@Rubyyyy also I am sorry that you have endo and that you have this to contend with wanting to ttc. There WILL be a way but I wish it was less complicated for you. The urethral bubble sounds not nice. The mysteries of this complaint are many.

Hi I'm having major issues emptying my bladder. I can be sat there for ages sometimes despite being desperate.
Doctor got me an Ultrasound done where I turn up desperate to wee, they look then send me to toilet, then they look to see how much is left. However typically, that turned out to be a good day and my bladder emptied completely!!!!! So now the doctor won't do anymore investigations :( Help!

Thanks

@3beesinmybonnet

Hi to everyone suffering with bladder issues. I don't have any issues but my late DM had interstitial cystitis for 12 years. She was told it was all in her head, she was bringing it on herself by being anxious, they refused to believe she was only painfully passing a few drops of urine and insisted she must be incontinent, it was unresolved trauma from an abortion decades earlier etc. I can't offer any advice since this was decades ago and I would hope treatments have moved on since then. She did find acidic foods and drinks aggravated it, also stressful situations would cause a flare up.

I'm posting this because you said you never get to hear success stories. Once diagnosed my DM had her bladder stretched and scar tissue cauterised about a dozen times . BUT in 1992 she was one of the first people in the country to have her bladder removed and replaced with a false bladder made from pieces of her bowel sewn together. For her the operation was a complete success, once she'd recovered she went to the gym every day, then when my DF retired they went dancing every day. Apart from passing calcified stitches occasionally she had no further bladder issues.
I don't want to give anyone false hope. Of the half dozen women on her ward who had the same op at the same time she was the only one who was completely successful. But she had 18 pain free years before she died.
I hope this gives somebody some hope and wish you all the best of luck xx

It's brilliant that your DM had 18 pain free years. The success rate sounds a bit iffy though - your DM being the only success story out of the half a dozen others on her ward

Many years ago, a urologist mentioned bladder removal surgery as a last resort. I thought it sounded barbaric, but I guess everyone has a breaking point and once all other options have been exhausted and nothing has worked, it is an option. Having said that, I sincerely hope that it's an option I never have to pursue.

I resent my bladder frequency and urgency and some days it really gets on top of me. However, it's far, far worse not to be able to pee at all, or have that constant need to bear down with the result being a pathetic, painful trickle.

Sending you all

@Clarice99
According to my DM the surgeon was a Dr O'Reilly at St Bartholomews who went to the US to see this new op demonstrated, then came back and did the first batch of ops in the UK, which included my DM. The other patients didnt have complete failures, it was more their urethra getting blocked and having to catheterise, whereas my DM was pain and problem free afterwards. I would imagine the op has been refined in the last 30 years.
I hope you find a solution xx

Thanks @3beesinmybonnet for trying to imbibe hope. I think that is a very last last resort though and not one I would relish. I am only ten weeks into issues so trying to keep positive that I get to keep my bladder and that it gets as better as it can. In truth I haven't read that the success rate for this op has come that far in 30 years, the bladder is a fiddly little fecker.

I have had the delights today of a vaginal exam from a young nurse who visibly recoiled at the mention of menopause. Cervix looks happy but why I'm spotting every single day remains a mystery.

Upping my amiltriptiline by 5mg seems to have helped a bit, but who knows if it's that, or the vagifem. Or if tomorrow might be different all over again. I'm still very uncomfy and needing a wee a lot of the time. Espeoially if I try to leave the house.

By now people are asking me a lot about what's wrong. What do you all tell people?

I'm going for an exam with my GP tomorrow so will see what that brings!

By now people are asking me a lot about what's wrong. What do you all tell people?

@feettothestars

As I 'nip to the loo' very frequently, I'm quite open in saying that I have an unstable bladder. It does depend on who you mean by 'people' though. I'm open with friends and family, and pre-pandemic, when I didn't work at home all of the time, some colleagues noticed I went to the loo frequently, but most were polite enough not to say anything.

Years ago, I did have a female manager who called me 'pissy pants'. I didn't let her get away with that and a groveling apology followed soon afterwards

My boss stood behind my desk with the URL of this thread showing...so I guess he knows now!

@BlameItOnTheBlackStar oops! I hope they're a nice boss.

I can't even get private consultants to call back to make appointments. My GPS are hopeless and not interested.

@wiltonian I'm sorry that was said to you. I'm glad you had the last word. May they never run into bladder issues

He is nice, but he's a he, and younger than me, so the idea of my ancient fanny and bladder probably made him die inside

@BlameItOnTheBlackStar I only want a woman GP who has endured a hard menopause! They don't seem to exist. I hope you make some progress. How are things?

Oh you mean your boss! Gawd.

Oh yeah tomorrow GP is female so that's at least a start. I'm ok apart from the dryness/itching/everything feeling very over sensitive.