Cystitis in agony hand hold ** interstitial??**

[Widget123]

Hi, I’m just in here for a vent, hand hold and reassurance that I’m not the only one whose going or gone through this.

2 months ago I was walking my dd to school when I felt a cold feeling in my bladder, by the time I got to the school I had to ask to use their loo. That was the beginning and it’s just got worse since... it started becoming more pain and tender ‘down fhere’, I started needed the loo more and more and it burnt when I went to the loo. I went to the docs and my wee tested normal but they put me on a week of trimethoprim, it did nothing, then they tried amoxicillin, this did nothing, cultures still clear. 2 days ago suddenly the pain went from becoming bearable to totally flooring me, I went to docs today and she’s found blood in my urine. She’s now put me on the antibiotic nitrofurontoin, booked me in for and ultrasound and sent off another culture. I’ve tried everything imaginable... I’ve drunk cystitis sachets and water like it’s goinf out of fashion, I’ve elimnated things from diet, totally cut out any drink other than water, I’ve even cut out tomatoes as I’ve her they are bad. Yesterday I had nothing but water some chicken and pasta and tonight I’m still doubled over in pain. It feels like a full blown infection but nothing’s coming up, the doctor thinks it may have become badly inflamed and has also given me Naproxen to ease the pain and inflammation. It’s christmas in 4 days and I’m so tearful, I’m supposed to be hosting for 10 people but right now I just want to curl up in a ball and cry I’m so sick of this it just won’t end... does anyone else have this? Please let me know I’m not alone. The pain is just unbearable

I hated my 1st 2 x consultants and they would make me cry at each appointment as I felt they weren't listening. By this point I was 3 years in and had tried loads of different treatments etc and was struggling to have any kind of life. My cystoscopy showed inflammation and some small lesions from memory it was 7 years ago and I have pretty much blocked out those 1st few years. My consultant, her team and my specialist nurses are wonderful and for now I have something that helps but I have struggled with my mental health constantly waiting for that to be taken away.

Realise this is an old thread so this is a long shot but @RosesM did you ever find a solution? Currently struggling with UTI symptoms (but no UTI) and read about how yours started with tiny amounts of leakage at random times and that’s how mine started too. Its 6 months since I had my baby and as your symptoms sounded so similar I wanted to see how things worked out if you were still around.

@Bramwell2020
Im so sorry to hear you’re struggling with this too it’s really awful.
I’m happy to be able to tell you I’m absolutely fine these days! It was rough for a bit and I was diagnosed with bladder pain syndrome but I got help from an excellent women’s health physiotherapist.
Physio identified that the muscles in my pelvic floor were really overactive. They had been misdiagnosed as weak (because I’d just had a baby) but turns out they were very tight and that was causing the constant urge to wee. My physio taught me how to properly relax those muscles again. It took a bit of time but it was very effective.
I’m back to normal now doing everything I was doing before and running after a busy toddler.
If you haven’t already I would recommend finding a really good pelvic floor / women’s health physio and getting an assessment.
You could also check out physiotherapist Jilly Bond on YouTube. She has lots of stuff about bladder pain which may help you figure out if your issue is similar. She also has exercises which may help.
Do you also have pain? I had terrible pressure in my low abdomen that got quite painful / felt like it could only be relieved by having a wee and the relief was very temporary. It turned out to be caused by the overactive muscles and has completely gone now.
If you have any questions drop me a line I remember googling and reading some really scary things but I made a good recovery and I’m sure you will too x

Hey @Widget123. How are you doing now?

@RosesM did you find your physio via a particular website / organisation? Thanks

Sorry - just realised very old thread

@Widget123 I know your post is old but it is so well written and I empathize so much with your struggle. I realise your words sometimes came from a dark place but you totally nailed the feelings of desperation and bewilderment. I'd love to know how you are now - did you ever find resolution or at least a way to live with it?
Xxxxx