Bladder Pain has ruined my life

[Cocothebear]

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.

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

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?

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

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.

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

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,

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

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. )

@3beesinmybonnet

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

Have you cut out tea from your diet?

Bladder pain is horrid [care]

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 .

Here are some very supportive and informative Facebook groups for chronic UTI sufferers:
www.facebook.com/cuticuk
www.facebook.com/groups/chronicutiwomenssupportgroup
I hope they help

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

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

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

Hi, i have the same problem since may, did you find out what it was, and what was the treatment and did you recover fully? Thanks.

Hi, did you find out in the end, what caused it and what was the treatment, are you ok now? I have been suffering the same for months, waiting for cystoscopy.
Thanks.

Hello, i have the same situation here, have been suffering for the last 6 months with horrendous bladder pain, waiting for cystoscopy. I am wondering if you found out what caused yours, did you get any treatment, did you recover, how are you feeling now? Thanks.

Hi, same here, did you recover, if so, what treatment helped? Thanks.

@Cocothebear I'm so sorry to hear you're in pain. I'm also bed bound, with major bladder issues among other things.

Please feel free to PM if you'd like to chat. 💐

chas23 you might be better starting your own thread as this one is over a year old. Hope you can get support and answers.

Hi, how are you now, are you healed completely? I am in agony and it has been 10 months, had 6 courses of bladder instillations but no improvement. I have 2 kids and i cant cope with this anymore. Thanks.

Hi Chas sorry I'm not often on Mumsnet and when I am I miss my notifications.
I'm going to just list everything I did, I can't tell you which exactly helped as I used what's known as a patchwork approach, I've a bit of several different strategies.
Drinking oxtail broth or lamb bone broth which I cooked with water and salt for four hours , two cups a day with a teaspoon of collagen powder. High quality not commercial nonsense, I buy one in a dark brown glass bottle.

Never ever touching antibiotics again after years of destroying my microbiome, now eating probiotic foods as the supplements were rubbish.
I trialed hrt and half believed it worked but had so many flares during and none after coming off .
Mizan daily massage helped enormously, this is a self massage to promote circulation around pelvis. Daily ten minute walks twice . Eating wild blueberries and sheep yoghurt everyday. Seeing a chiropractor regularly helped a lot, I sometimes feel it's to do with misalignment of the pelvis. I used Yes Oil based everyday but don't anymore.
Most important, I put a sign Infront of my toilet with the number 3 to remind me to take three deep long breaths during weeing and stay there to really fully empty the bladder.
Refused all antidepressants because they slow the lower part of your body down, effectively I was retaining urine for so many years.
Altering my diet (I had convinced myself I was allergic to everything) to include more of everything, protein, sourdough, fruit veg on moderate amount not crazy, extra virgin olive oil, something about that stuff is very healing.

An excellent drug for bps is called hydroxyzine , it's an antihistamine that targets mast cells in the urethra. On horrendous flares that's got me through to the point I felt calmer.
A wise doctor once told me that true healing is not linear. That helped me through the setbacks.

Forgot to add that a book called my Menopausal vagina was really helpful as symptoms were so similar to mine and I then joined the Facebook support group for vaginal atrophy which was unbelievably comforting as just about everyone was experiencing the same bladder symptoms. Hormones do play a big part .