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.

@BlameItOnTheBlackStar I'm like that. The nurse said it all looked healthy. It doesn't feel healthy! I also hyper aware of my bladder. I'm drinking a lot (fear if I dont) so am weeing a lot. I just want things to feel normal

I totally feel your pain

I'm reading this thread while sat in the bath to ease my bladder pain.

Can I join the club I don't want to belong too..

So I'm also endometriosis, had excision surgery in June 2020, had covid and since all of that have a painful bladder, I've had all clear scans and probes and apparently don't have anything other then IC and had some endometriosis removed from the bladder surface.

I'm also 46 and looking at HRT also keen to chat to the poster who said she can't have HRT because of endo? I've been told I can.. but have held off taking it.

After all that waffle and having had IC for 3-4 years now I'll tell you what helps me.

I have Cut out all acidic food and nightshades when I get a flare I drink milk, cream diary, yogurts and it helps.

I do drink wine but I'm aware that higher tannin content flares me up.

Hot water bottles at night.

Amitriptyline is a bugger it does numb the nerves but also numbs life (my experience)

I refuse antibiotics unless I need them but then take a probiotic to try and balance back.

And the is the weird part, I downloaded and use the curable app, with IC and endometriosis being chronic pain I explored my link with the panic and the fear of the pain, the overactive nervous system and found relief.

I'm also not saying I haven't cried with frustration and told my bladder to piss off, but the curable app helped me to wake up and not straight away focus on pain, it helps me just ignore milder days and get on.

Next on my list is Pilates and I do weight training, and sometimes train though the bladder pain.

Also I have narrow valves to my bladder so an actual physical restriction, that sometimes results in my urine backing up to my kidneys and causing me pain, so when and if you have scans ask them to check the dimensions it's something they miss.

Oh and mine also gets worse about 2-3 days before my period which is apparently very common.

Wooops and stress!

Stress flares mine up so much always a few weeks before holidays or Christmas.

@Cailleach can I ask why HRT is out? I've been looking for someone my age with endometriosis needing HRT and I can't seem to find any resource.

I paid for a louise newson consultation and was prescribed standard gel & 2 weeks of the progesterone on and off but I've read that endometriosis would be better with continued progesterone? So questioned the advice from them.

@applecrumbleforteaagain welcome to the club we'd all like to leave!

Sorry about your bladder pain. Surgery has messed with my insides, I healed terribly from open investigative surgery and my c section so it's all pinched inwards and I can feel tugging on my belly most of the time. No one medically is interested in it!

Amiltrip - did you stop taking it? It's a strange drug. Can't say it's helped my sleep much but I do feel the pain is better. But is it still there horribly underneath - who knows. I am like a zombie in the morning at the moment.

Louise Newson. Mm. I think she gives us all the same!! Have an apt coming up but I'm inclined to try and find someone else. She's quite celeb like these days but I haven't been blown away, At All. She's also very into throwing all the estrogen at things and I know mine is high and low at the moment. Peri is a right car crash.

I am heartened that you can drink some wine. I am so scared to drink it, it's become like battery acid in my mind! But I love a nice glass of white wine. And I'm in awe that you're training through pain. I've collapsed around this. I did venture out a bit more today and did the school run. This whole bladder/peri disaster has made me have a total breakdown in honesty.

I do have curable. I began it in November when I was in so much agony that I was on a tens machine. I need to revisit it and reframe some of my thinking. I have become so scared of the pain that the fear is almost worse than the pain.

My female GP said to me that the body had a way of sorting itself out and that was it. I have gone to see a couple of private docs but to be honest not been that impressed with any of them and still trying to work out who to see who would actually help and most importantly really listen.

The best person I have come across is the Women's health Physio - she is a diamond.

Sound like we are all in such a similar places, so a combination of calm sleep stories and curable really helped me keep on track of the panic.

I still use it now for smaller flares, it helps more that I ever thought I would.

I had to stop taking amitriptyline, I was such a zombie and I run a business with staff, I was able to get in later and later but stopped being able to function even on a low dose it was making me so zombie like I didn't regonise myself so just stopped it (don't recommend that) but I'd rather the battery acid pain to the zombie!

Training is hard, right now I know I have to go for my mental health, I know it will be uncomfortable but for that hour at the gym I laugh, I feel strong and I loose track of time and pain goes to the back of my mind so it works for me to push through the pain.

I didn't have Louise herself but will say the letter I received after the call mentioned things we'd spoke about that we hadn't spoken about!! So a bit of copy and paste going on, and for 200+ I'd sort of expect a bespoke consultation.

I felt like yes I had someone listen but equally like the outcome will be the same "yes" here is the gel and tablets.

And in my case I'm not convinced it was the right solution, and when she mentioned the coil and I said no. She questioned me on why not.. almost arguing with my outright "no" but I have so many reasons for my "no" and didn't feel like I had to explain myself further.

I hope you are ok, I can hear the frustration and panic in you, and want to let you know it does ease up, just sounds like you are in a nasty flare period.

Also I find spring & summer is easier, I wonder if it's foods, drinking more or calmness? Can't put my finger on it but my symptoms flare during October, November, December..

I did look at a link between antihistamine, and bladder that needs more research, and that works with my summer theory, as I take antihistamines.

Wow @Applebobber I can't believe a GP fobbed you off with 'your body will sort itself out'.

I wonder if they say that to men? Oh no wait, they invented viagra for that. It's just us who have magical bodies which don't need care or attention.

Yes - what is most upsetting is that it was a female gp albeit young.

You feel like such a fraud and that’s how many docs make you feel - as if you are making it up or making a fuss over nothing.

@Applebobber - I also find it very upsetting to be dismissed by female medical professionals. It feels more of a slight somehow, as I expect them to be more understanding, and not dismissive.

Whilst they may not have the same problems, YET, this shit could happen to anyone!

I'm post menopausal, on HRT patches (Evorel Conti). I've been on HRT for over a decade and feel that these patches suit me best. Long may it last. I also saw someone connected to the Newson Clinic and was prescribed Estrogel and Utrogestan. It made me feel awful. The gel caused me to be really, really jittery about 30 mins after using it and the Utrogestan, after having insomnia my whole life and being used to 4-5 hours sleep per night, caused me to sleep about 12 hours per night and fall asleep during the day too. I felt permanently 'hung over'.

When I raised this with the prescriber, I was told 'you're the only woman to report this'. I didn't back there go again, my GP was more helpful and sympathetic and agreed to prescribe an alternative - Evorel Conti.

The whole thing is a bloody minefield!!

Can I sneak in here and sit by the side entrance?!
I had a really bad infection June 2020 - almost certainly caused by sex
Had a few short courses of ABs which made next to no difference .... but enough (along with the certainty of what caused it) to make me confident that it was an infection. So I was prepared to go down the heavy duty AB route. Made sure I was heavily dosed up on probiotics, drank a moderate amount of water as I didn't want to wash the probiotics out (I believe that's a thing) and took a 3 month course. I forget which one - some of the ABs I took in the early stages didn't work at all and some made a small difference so obviously we chose the one that made the small difference even though the consultant suggested otherwise! But I'm pleased to say it did work and about 12 months after it all started it was finally gone.
Now I do suffer from having to get up a couple of times a night to go to the loo which I never did before. And I do feel very dry and quite irritiable in the vulval/urethral area so I'm going to look at HRT once the doctors are past prioritising boosters.
But compared with this time last year I am singing and dancing again!

@oviraptor21 Thats great to hear and it sounds like some localised or systemic HRT may help sort the lingering aspects.

Its that confidence to believe its an infection which is the key as then like you I would be - ok my only option is Ab so I just need to put my big girl pants on and get on with it. However with the NHS test seemingly pretty useless and so much contradictory information about Microgen and other tests its a nightmare.

Am thinking I may try to get a broth culture done again with Focus and if it shows something again then I will just go with it. However getting a Doc to sign that off is not as easy as it sounds ....

I’m fed up of feeling like a fraud with this bloody bladder as the dipsticks come back clear apart from blood traces so they think I’m fine.

Is anyone under LUTS or dr Anderson?

Sunday greetings. I hope everyone is doing ok today.

@oviraptor21 thank you for sharing your story  it is very hopeful. Can I ask who you saw and what AB you took?

@Applebobber it's an infuriating conundrum isn't it. I increasingly think mine is VA and an infection that fell into thin fragile tissue. ami and vagifem seem to be nudging things into a better place but it changes hour to hour.

@VioletRose91 welcome! I saw Dr Anderson in Nov/Dec. Broth culture twice grew nothing but she did prescribe me cephalexin on symptoms. She's lovely but the clinic is really hard to get hold of and the whole process was very dragged out.

Can I ask folk - is your wee clear now? Mine has not been cloudy since my first antibiotics. It looks like totally normal wee.

I'd like to join too - I first starting having issues just before I turned 30 with reoccurring uti's after sex (I believe stress was the initial trigger). After the last uti I still felt like I needed the toilet all the time so I was examined by a urologist (bladder emptying fine so that was that) and a gynaecologist who gave me estrogen cream to build the wall up between vagina and bladder.

Things finally settled down although sex was always painful, apart from when at my most fertile and I would bleed very slightly after. Also my bladder was slightly overactive (nothing I couldn't live with though). 10 years have now passed and Since that time I had 2 children and no uti's until this November when after sex I felt I had a uti but it was a lot milder than I remember them being. I took a course of antibiotics but I didn't feel any better. Urge to urinate and awful burning.GP took samples and said there was no culture growths but there are white blood cells. Vaginal swabs show strep b which apparently a lot of women have but it doesn't cause any symptoms.

I have a telephone consultation tomorrow with a urologist so will see what they say. Some days are better than others. The things that help me are Buscopan (relaxes bladder spasms) and chamomile tea. I have given up caffeine but not chocolate. Weirdly the days I felt the best were over Christmas. I didn't drink excessively but I did drink a fair bit Christmas Eve/day and New Years. I can't work out what my triggers are

Oh and it hurts a lot sitting down because of the pressure against my urethra

@VioletRose91

I’m fed up of feeling like a fraud with this bloody bladder as the dipsticks come back clear apart from blood traces so they think I’m fine.

Is anyone under LUTS or dr Anderson?

Me- I'm under LUTS. It's been a lifesaver for me after 12 years of sheer hell. I'd tried loads of other treatments (various instillations including steroids and heparin) and was on gabapentin and tramadol daily for severe pain. I was getting up about 12 times a night for the loo and could barely function. The antibiotics have worked for me while nothing else did. I'm lucky I tolerate them fairly well and they are not for everyone but for me it's changed my life. I also couldn't tolerate HRT when my bladder was bad as oestrogen was one of the things that triggered a flare. I'm on it now with no issues

@TheWorldKickedBack such similar experiences for a lot of us here. Are you still using topical estrogen? I'm hoping that's what's helping me inch away, very very slowly, from the utter misery I've been in since November. I'm also on 15mg of amiltriptiline which seems to be helping with pain and sleep.

I asked my gp to try the estrogen cream again but I found I was feeling more irritated so gave up after a week. Weirdly I don't get symptoms during the night and only get up once a night to go to the toilet which is usual for me anyway.

@TheWorldKickedBack ovestin made everything sting worse for me and so did Blissel (and a hefty dose of thrush). So far and with fingers tightly crossed Vagifem I am tolerating. Early days though. I think I'd surely had atrophy going on for ages. I wasn't experiencing any dryness but if I look back, I was weeing more in the night and sex hurt a bit high up. It has been a shocking discovery for me that VA is a thing that can happen not in your seventies.

A women’s health physio is a REALLY good place to start for bladder and pelvic issues. They are very good at identifying what’s wrong, helping you if they can and pushing you down the right route if they can’t, complete with names of drugs and other pointers to try and help you get the help you need.

I’ve paid private and now I know exactly the referral I need from my gp for further help. She has been worth every penny.

May I join you?
I have a history of recurrent cystitis going back to when I was a toddler, although very little for about 20 years, until last spring. I had cystitis, which appeared to go, but came back after a few weeks, and from there I must have tried every antibiotic and thrush treatment ever invented, although there was no evidence of infection. In fact I was often prescribed the antibiotics over the phone.
Eventually in October I had a couple of very helpful appointments with a sympathetic GP who suggested firstly that I needed to stop urine from touching my skin, as I was desperately sore on the outside, as well as having internal pain. She advised me to apply a barrier cream both before and after weeing, which I have to say was a complete faff, given how much time I was spending in the loo! I used sudocrem, I figured it works for babies so might work for me! And it did help.
Then she changed my vagifem for estriol cream, and suggested I apply half the dose internally and half on the outside. She felt that VA was my main problem and if I could sort that out I would be a lot better. She said the atrophy was affecting my urethra and applying the cream as close to that area as possible would help. Applying the cream can sting a bit, but it doesn't last long, and it has made a huge difference. After about 3 weeks I was so much better, and it's now quite manageable. I only have to go to the loo once or twice a night, which feels like a miracle, even when I would have said I wasn't suffering from any symptoms I was going more than that.
I can only drink water, that has been the case for years, and I have to avoid certain foods, but I don't mind that, I'm used to it.
I wish lots of luck to everyone on here, it's a miserable thing to suffer with.

Hello, I'm a fellow sufferer, sending much sympathetic support, to all.

Suffered from recurring UTIs for years. First saw Prof Malone about 20 years ago at the Whittington. He prescribed nitrofurantoin, to be taken at first sign of infection, and after sex. It's been a huge help, apart from a bad phase a few years ago. I'm now 51, on HRT, recently started vagifem, and that's been a big help so far... until a hideous bout of thrush, which I'd not had in years. So am now worried that the vagifem was the cause?? Not sure if HRT is correct dose/type yet, although I do feel better.

Hello, I've found me people!

I've suffered with bladder problems for years. What I thought was repeat infections, but samples always came up clear when sent to lab. I've been through urodynamics, cystoscopies, bladder installations, abs have tried pretty much every herbal remedy and supplement you can imagine.

Last year I decided to bite the bullet and pay to see a private specialist at Professor Malone Lee's Harley Street clinic. I was diagnosed with an embedded infection and I'm now in treatment and taking long term antibiotics. I'm so feeling so much better, still get some frequency, but no longer feeling tired and generally unwell all the time. I take 4x 500mg cephalexin daily and 2 x hiprex tablets.

I have huge sympathy with anyone suffering from this condition , it's so draining and really impacts your quality of life. I would really encourage anyone who's wavering about treatment to do it, I put it off for a long time as I worried about cost and about the side effects of being in long term antibiotics, but now wish I'd done it years ago.

If you're unable to look at this option, I would recommend getting your GP to prescribe amitriptyline, that's the only thing that really seemed to make a difference for me as it relaxes the nerves and calms everything down, relieving some of the pain and urgency.