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.

Oh, joining!

I've had problems over the last few months.

Thrush in November which never felt 100% resolved. Followed by weeks of horrific dryness and itching, and for the last week have had a UTI. Had antibiotics and a swab, seeing the doctor on Friday.

It's so so disappointing because DH and I had a sudden resurgence of a (very!) active sex life, which has been curtailed after years of not doing it much thanks to small children.

I've got a horrible feeling the dryness etc is here to stay, and I'm so not ready for this to happen.

Oh @BlameItOnTheBlackStar it's bloody awful isn't it. I'm only 45 and devastated by it all, sex is really important to me and I just can't at the moment. Are you on HRT?

I feel I want to be the voice that says we will get there and find a better place.

No, I'm not on anything. I hadn't even considered I might need to be really, as this has all really come on so suddenly. My periods are still so regular that I never gave it a lot of thought.

The symptoms of vaginal atrophy are spot on though. It's really gutting isn't it? I can't believe how many years we were too tired for regular sex, all of a sudden we can't keep our hands off each other, but it's just not possible.

The thought of using KY or something is just SO fucking unsexy as well.

Oh and the god damn prolapse doesn't help matters.

Honestly. It's a disaster zone.

@BlameItOnTheBlackStar it is the least sexy thing ever. I'm on HRT and now also vagifem and feel so fed up. But only three days into the VF so will see what happens. I am beginning to wonder if I have got vulvodynia. The whole thing has upset me so much and I've been so anxious about it (also, thanks peri) that I'm gripping that area and it feels like the nerves are activated. It's more vag than bladder at the moment though my bladder still wakes me 2-3 times a night ANNOYING. I'm on amiltriptiline 10mg. It might be doing something but it isn't doing enough and I've been on it for 5 weeks. Going to up it tonight to 20 and see what happens. I also think I could do with some pelvic physio...

I went for physio a few years back. But she threw me by asking what my prolapse was stopping me doing...I sort of panicked and said 'running' so she told me to do my pelvic floors and that the benefits of running outweighed the negatives.

Actually what I wanted was not to have a prolapse, and for it not to worsen as I got older.

If only we could go and access help and get exactly the solution that would fix things. So many bodily things are mysterious and layered and need multifaceted approaches. It makes my brain ache trying to work out what might help me!

I know, it feels like quite a mysterious thing to get to the heart of for some reason. Like, there can be multiple factors behind it, so who is the ultimate person we can go to?

I've tried four or five different creams, but I don't know if either of them have had a postive impact, or if I'm making things worse. What I hate is the feeling that I'm just treating symptoms - is HRT (or anything else you've been given) targeted at improving things internally?

I think it is supposed to help but I was on HRT when this all started I think I am on the mysterious quest to find my HRT holy grail. I have three key things I need it to tackle:

Bladder/VA
Anxiety
Crap sleep.

None of the above were issues for me before Jan 2021.

I have loads less frequency at the moment in the day (though I am drinking loads so hard to know if I'm going a 'usual' amount) but would like not to get up in the night anymore. I have sporadic bladder aching.

What I can find NOWHERE online is what to expect after a nasty UTI that goes on for weeks. It makes sense to me that recovery will be slow but all the threads end with no resolution. Which I presume means people end up better or not as troubled but so hard to know. I promise not to do that! I will keep updating. Bladder issues since end of Oct has totally derailed my life and I am so hoping I can get it back.

Where are all the other bladder struggling folk... I know it's not just us two.

Hi really interested to read this. I am 49 and have been having bladder / vaginal issues since may last year. It has nearly broken me many times - not least because there doesn’t seem to be a clear answer.

I am on hrt and vaginal estrogen. Have found estring and vagifem most tolerable / the creams just burn. Most of my symptoms - apart from bladder are vulva related.

I don’t know if I have an embedded uti or I just need to get the hrt right. NHS cultures have come back clear, one broth culture had e faecilis in but could have been contamination so I am lost. Antibiotics have helped after 24 hours for a day then all comes back.

Sorry I don’t have answers but do feel for you all.

Joining but will type a proper post tomorrow!

Hi all,
I was treating what I thought was recurring thrush for years before coming to the conclusion that I gave vaginal atrophy. Last year I had the most incredible pain I've ever experienced (worse than childbirth) and discovered that I have a prolapse. The dr gave me vagifem to alleviate discomfort and that has helped significantly - i didn't have a uti, and I don't think it was the prolapse especially - I think it was peri menopausal atrophy kicking in.

I've been going to the dr for a couple of years with various niggly symptoms and not one doctor put them together and suggested menopause as the cause. I'm actually feeling really angry because I've been feeling off for a few years and HRT could have helped had I known I needed it.

Anyway, mostly what to wanted to say is that I've been seeing a women's physio and she said that my pelvic floor is overactive and tight and that doing pelvic floor exercises was making it worse. So be careful if you are going these to help. She has also given me breathing exercises and recommended Pilates to help lift everything and help prevent the uti symptoms. The vagifem is really helpful, as is HRT. I'm still tinkering with that but am hoping that if I get the levels right it might help with the awful itching and dryness.

I find I get on top of it and then when I bleed the sanitary towels irritate everything again.

Sorry, appear to have written an essay but it's nice to get it all out!

I'm 45 and for about the last four years have needed a wee three times a night and every two hours in the day. It's not a UTI thing.

It's got worse since I had an ovary out last year. I have severe endo so HRT is out.

It's hell.

Hi bladder/vag mates. God it's a hard condition isn't it and so uniquely individual and complex. I've felt very low today with it, it's had such an impact on me mentally.

@Applebobber what's going on for you feels SO similar to me. Mine came on literally overnight and is all wrapped up in meno but embedded infection is on my mind daily. Who did you see for the broth culture? I saw Dr Anderson. She was so lovely but the clinic is woefully understaffed and no one ever picks up the phone or replies to a first email.

And I can't help but think it's more complicated than throw hard core ABs at it which cause other huge systemic issues for me. I'd never had thrush before and my guts are still a mess from just a month of antibiotics. So whilst I am happy Prof Malone and the embedded tribe are helped no answers seems clear if you can't take the medicine. I feel I was bordering on getting a full blown bowel infection from cephalexin. I have a bottle of hiprex here, anyone taken it? I'm too scared it will burn me which is the exact opposite of what I need right now.

Also, my UTI was treated immediately and never really changed much despite three types of antibiotics and it got better than it was off them. It's just not bloody fully gone but then I come back to atrophy. Anyone else read ALL the forum posts that exist or is that just me?

On 15mg of amiltriptiline now and I have had less pain today but it's still hovering in the background. I am scared of the pain and tensing which makes it all worse. I have been away from my (self employed) business since this began two and half months ago and lucky I can do that as DH works but also gutted and skint. My life has changed so very much.

Also isn't it a bummer that it takes out a lot of foods/drinks? Are folk cutting out things to see if that helps? I'm too scared to eat or drink anything listed as a bladder irritant.

I'm also seeing that my progesterone HRT makes everything worse. Mood, bladder, motivation, feeling down.

So that's my update for today.
Wins: small reduction in pain today after upping amiltrip. Nice voice notes from mates.
Mehs: mood - I am still at the crying about it stage and feeling scared. I am hoping I can learn to cope better.

@Aderyn21 - thanks for sharing your story. Did you find the physio worth it? I'm a bit worried about internal exams as it's all so sore but I guess they've seen it all.

The physio was good - during her examination, she located the muscles which were especially tight and has helped me to loosen them a bit. She has also given me posture and breathing exercises to try and keep everything lifted. I see her about once a month. Haven't had a flare up for a while, although there is still discomfort. But I've also started HRT and use vagifem so I don't know for sure whether it's the physio helping or the vagifem tbh.

I'm glad you've found some relief @Aderyn21 but hope you can get full relief in the coming weeks. Even low level discomfort can be disrupting and unsettling.

Some days I wish for some pain alleviation but I am having trouble accepting that that might be as good as it gets. I want my body from three months ago back. I would never ever take it for granted again. Though I think this will leave a mental scar moving on. I'm not sure I will ever feel free from the sheer potential of bladder issues. It's really done a number on me. I have had a lot of physical pain and suffering in my life and it would appear that this has been my final straw!

Oh and as for bleeds and managing then I find period pants that I change over the day better than anything else. Tampons are another thing to have bit the dust in this whole saga.

I've just found this thread .

I was diagnosed with Interstitial Cystitis in my early 30's. I'm now in my late 50's. My bladder controls my life. I have bladder urgency, frequency and bladder pain. Things were much worse when I wasn't on HRT and last year I had to come off HRT for 3 months due to a post meno vaginal bleed and my bladder symptoms hit an all time high. I felt as though I lived on the toilet.

HRT and Vagifem pessaries do help with the urgency and the frequency but nothing else has helped really. I've had surgery a couple of times to stretch my bladder, I've also had 2 courses of 'bladder installations' which is a cocktail of drugs is put into the bladder via catheter and then flushed out - this treatment made things much worse. I've tried various anti depressants, including Amitriptyline (didn't help at all) and Duloxetine (after 3 days I couldn't pee at all and my GP sent me to A&E). I also have tablets called Desmopressin which stop the production of urine and are used in situations like very rare occasions I go to the theatre/ballet. The side effects are horrible though so I tend to avoid situations where I can't freely access a toilet.

I'd love a stable bladder. People generally don't realise how debilitating it is for your life to revolve around access to a toilet.

Gosh, this all sounds so depressing! Sorry

Hello, I'm 55 and have been dealing with this for a while now. It began intermittently and then got worse and worse and in my case is very much connected with menopause. At the start it would only happen as I came up to my period but then it turned to all the time.

Things that make it worse: white wine, coffee, not drinking enough water, hormone fluctuations.

Things that make it better: Estriol cream. I didn't get on with vagifem, which gave me hot flushes. I don't think I am getting quite enough oestrogen from it, but it mostly works.

For exercise, an incostress silicone pessary which holds my small prolapse in place when doing squats (and was used for running but I didn't like running and it didn't like me...)

Also - and this is a bit odd - but Thinx pants (like period pants but for bladder leakage). They say that stress can increase symptoms, and so wearing the pants and the reassurance they give helps ease it. i think it's true, and I don't begrudge the cost of importing them from America.

Having said all of that, it's still intermittent and lousy so any advice and help would be very welcome. It was driving me mad just before Christmas - I think some kind of bladder infection and I almost have it under control now.

@Clarice99 I am sending you so so much love. And I'm glad you're here. I am only early days with bladder issues and my goodness the impact it has on your life - I am sorry you've had so many years of it. I'm not going anywhere at all at the moment. The thought of no toilet is putting me off everything but I'm going to have to get used to it and start doing things again. Do you have some easier days or spells? And balls to amiltriptiline and duo not helping.

@wiltonian glad to see you here too. I had no idea how hormones effected the bladder it is incredible that I got to this age without realising. Thinx is a good idea.

@wiltonian also I'm a bit fresh out of ideas but I am on an eternal quest! I'm throwing the supplements at it. No idea is any of them are helping but I'm not as bad as I was in Nov/Dec. I wanted to be put down then which I know is a terrible thing to say. Oregano capsules 'seemed' to make a difference. Anything with tomatoes is Not Good which is making me sad. It's a real pleasure stripper on so many dimensions.

Also I'm finding it hard to tell people what's going on with me and why I've vanished from the world. Covid and winter has been a good foil but that's not going to last forever.

Oh and @wiltonian are you on full HRT? I am but I think I need to up my estrogen. I think some people need full HRT to really get on top of things. I know it's not for everyone though. And I can't say that for me it's been the magic golden bullet for all the Shit Menopause Things.

Thank you @feettothestars. Sending you love and best wishes in return.

My bladder issues are made worse by having a very small bladder capacity (hence the bladder stretch surgeries). This was picked up decades ago in the Urology clinic - catheter, measured input of fluid, ultra sound and timed measured output.

Pre-pandemic, I had a lot more freedom as everywhere was open and I knew where all of the public loos were, but since Covid hit, lots of public facilities are closed. I have a card from my old urologist that says I need the toilet urgently. Thankfully, when I've presented this in shops that don't have toilets, they have let me use the staff toilets - thank you Home Sense, TK Maxx and Aldi.

Some days I feel very resentful about having such a crap, unreliable bladder but it could be worse. And not all days are bad. I have learnt what not to eat/drink - grapes and wine are really bad triggers. It's a good job I'm not a fan of wine! Coffee can aggravate my bladder, but not always. I can't use public transport either as by the time I've walked to the bus stop, I need the loo, so I have to either drive or get a taxi.

As I say, it's not all bad. It has been much worse. At one point, in my 40's I think, probably pre HRT, I was getting up about 10 times a night. Now, at most, I get up two times, but most often just once a night.

@wiltonian Covid has a lot to answer for in terms of freedoms!

I'm trying to figure out what sets things off frequency wise and it's all a bit of a nasty shock to not be able to eat and drink whatever I like. My main issue is pain though. I was up 16 times one bad night in November but am down to 2-3 times now. Lack of sleep makes it all so much worse.

There are most definitely not enough nice clean public toilets in the world.