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Chronic pain

Bladder Pain has ruined my life

15 replies

Cocothebear · 04/02/2022 18:06

I don’t really know why I’ve come on here to write this, I don’t know what to do with myself anymore and I genuinely feel like I’ve had enough.

I’ve got two gorgeous little girls and my life should be amazing right now but im in such a dark place.

Just over 3 years ago I was walking my kids to school when I started getting a pain in my bladder, fast forward a few years and thousands of pounds later and it’s still there, worse than ever before.

It’s unbearable burning pain 24/7. I had a Cystoscopy a while ago and when they filled my bladder it just filled with cracks and blood. No one knows what’s wrong with it or will help me, I’ve literally been laughed at by doctors and told it’s in my head.

I stupidly and desperately went to Turkey and had an operation on it a few months ago which has literally left me bed bound. I’ve let go of my friends and can’t even manage to walk my dog anymore.

I don’t know what to do anymore. I just cry all day.

OP posts:

userxx · 04/02/2022 18:10

That's sounds unbelievably hard. What operation did you have in turkey ? Would the NHS not do the procedure ?


Akire · 04/02/2022 18:25

That sounds awful, is there reason why you went abroad? If the operation showed blood and cracks then something so going on. When was last time you saw a consultant in the UK? Have you been referred to bladder and bowel team discuss managing fluids and going to the loo?


dogaibu · 04/02/2022 18:29

I think I remember you. You were diagnosed with IC right?

I know that in truly terrible cases they will remove your bladder and replace it with a bag. This is truly last resort of course but if you've been in agony for years I'd be pushing for this tbh.

I'm so sorry for you


chillydownwiththefiregang · 04/02/2022 18:33

Oh gosh OP. I didn't want to read and run. Is your DC's dad around?
Do you have any family to help?

I'm sure you've tried everything but have you tried aloe Vera capsules? I feel for you, OP.


3beesinmybonnet · 04/02/2022 18:35

Have you looked up interstitial cystitis? My mother had this and was told it was all in her head. Until it was diagnosed and treated. Don't let them fob you off OP.
Hope you get some answers soon xx


Rosemaryandlemon · 04/02/2022 18:36

I think you need to go back to your GP. There are 2 issues here. Has the op done more damage and your underlying condition. You need to be referred back to urology to establish this. If they can’t do anymore then they need to at least refer you to a pain management clinic,


chillydownwiththefiregang · 04/02/2022 18:41

Also, have you been prescribed pain relief? I have been prescribed amitryptaline


3beesinmybonnet · 04/02/2022 18:43

Someone started a thread called The Moody Bladder Hangout on the Womens Health board around 10th January which you may find helpful OP. (Sorry linking on my mobile is beyond me. )


chillydownwiththefiregang · 04/02/2022 18:44


Someone started a thread called The Moody Bladder Hangout on the Womens Health board around 10th January which you may find helpful OP. (Sorry linking on my mobile is beyond me. )

Thank you I'm off to look at this too x

felulageller · 04/02/2022 19:50

Have you cut out tea from your diet?

Bladder pain is horrid [care]


Aderyn21 · 15/02/2022 20:49

I'm also experiencing bladder pain - it's so debilitating. It literally ruins your life and makes it impossible to live normally when it flares up. I'm seeing a women's physio and the dr gave me vagifem pessaries to help but neither has cured it. Sending you lots of sympathy because it's truly awful .


sergeantmajor · 25/03/2022 14:03

Here are some very supportive and informative Facebook groups for chronic UTI sufferers:
I hope they help


lottie222 · 09/05/2022 08:16

OP how are you?
I suffer from bladder issues that started during my first pregnancy. I'm a bit of a mini expert so I hope I can help a tiny bit.

First of all, what was the operation you had? Was it fulguration?
Secondly, are you under the care of anyone? Where are you based?

Have you tried any nerve pain blockers, Amitriptyline?
Have you tried bladder instillations?
Have you considered it's a chronic uti? Unlikely unless you have had many reoccurring utis in the past?
Does your pain come in flares or is it mainly always there in some capacity?
What are your main symptoms?

Don't worry this will get sorted. X


stirling · 11/05/2022 23:09

So sorry to read this. I went through exactly the same for five years. By this time last year I felt I could not live another day in agony. I spent over £7000 seeking private urologists, urogynaecologists, gynaecologists it was all pointless. They were the supposed best in their field yet they couldn't tell me what was wrong. I saw an end ourologist who explained it to me. Part severe trauma and part low hormones. I did several things and am a lot better. There is hope. You can pm me if you want. Sending a virtual hug


Grosscostsagreed · 30/06/2022 09:03

Have you looked into to treatment with Prof malone-lees team at harley street?

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