To wonder what else I can do?

[sosickofthisbullshit]

Sorry in advance for the essay and I realise this probably isn't the best place for this but I'm at my wits end and desperately need the traffic.

I've name changed due to the incredibly embarrassing and personal nature of the problem.

I have been diagnosed with a hyperactive bladder, it's not life threatening by any stretch of the imagination but it's devastating in its own way. I've had it my whole life and it flares up particularly badly at times.

Right now is one of those times. In the past 2 days I've wet myself in public while out on a dog walk and again today while I was at work. I was lucky that there was a shop open opposite where I could go and buy new trousers and feigned a period emergency to my colleague. I've had many extremely close calls while walking to and from work. I cannot tell you just how humiliating it is to have absolutely no control over when and where I go, I just can't hold it and the urge comes on so strongly and so quickly I have no warning!

I contacted the bladder and bowel service to try and get some sort of resolution, it took 9 months for them to give me a phone appointment with a specialist and it's been about another 9 months since I last heard from them. I'm still waiting for a bladder scan to pinpoint the nature of the problem and try to get some sort of solution. I've tried 3 different types of medication and honestly I don't know what else to do in the mean time. All I've been offered so far is some fairly unhelpful leaflets about how I should try bladder training (already tried, doesn't work) and give up bladder irritants including (but not limited to):
Alcohol
Caffeine
Anything acidic
Anything spicy

Drinking water apparently helps (according to the leaflet) as overly concentrated urine can irritate the bladder more, except it doesn't help because then I need to go even more.

What else can I do? I want to call them up again and beg them to get me an appointment as soon as possible but I don't think that would even help and I'm just so defeated right now. I feel so disgusting and fed up. I'm so so tired of having to cart around a backpack of spares and pads in case I have another accident, not to mention the fear that if I leave the house I'll have another incident and next time there might be people around to see it.

TIA for any advice.

Just venting I guess 😞

So sorry to hear of your plight. I'm afraid I have no advice but was wondering whether there might be self-help or FB groups of fellow sufferers?

I didn’t want to
read and run but I don’t have any constructive advice for you, just hopes that your DR can help you.

one thing I will say is, you know how it is, no one is watching or taking as much notice as you think they are. I don’t know if that helps when you’re feeling self conscious etc but people honestly care more about themselves than anyone else

Thank you, I know that is probably true. I'm just so embarrassed that I'm having to wear incontinence products like an old lady in my 30's. I wish anyone gave a shit enough to give me a proper solution beyond 'just do pelvic floor exercises and stop drinking coffee'.

Have you got a card? Apparently you can get a toilet pass from the bladder society (possibly not correct place!) to use to access toilets in places there aren't public loos. Also have the same issue...

I have no idea if any of this will help, but I'm currently with women's health for my bladder problems. My doctor is wonderful and in addition to your list has also suggested:

Checking foods I eat regularly for aspartame and other sweeters. Studies have shown them to cause irritation.

Not drinking anything quickly, but to drink small amounts very regularly. Almost constantly sipping a (non caffeine/alcohol) drink.

I've gone up to bed now, but I'll check my notes in the morning for anything else that might help.

-A fellow 30 something year old with an embarrassing bladder

I have the same issue, I've always had a dodgy bladder from childhood and it's gotten worse since my late teens. I didn't have a great upbringing so I got punished for accidents rather than taken to the doctor. I only got the courage to go to the GP a couple of years ago and they only agreed to refer me to urology in may last year. The waiting list is around 5 yrs here apparently.
I totally get your fears around having an accident in public, it's happened to me many times as like you say I get a sudden urge and just can't hold it. It's horrible and I constantly have to wear massive incontinence pads 24/7, I'm only in my mid 20's 😭.
To reduce my fears I try to remind myself that if I have an obvious accident most people will understand. It's a medical condition and it's not intentional. It's really difficult and it has a huge effect on your self confidence so it's important to be as kind to yourself as possible but I get that it can be really really difficult and frustrating.

I know it’s not quite what you’re after, but it might be worth speaking to Coloplast.

I dealt with them for a family member with a stoma and they also do incontinence products. I’ve been so impressed with the care/service/info available from them. Might be worth a call and they might be able to point you in the direction of local support group too.

Also try posting this in the women’s health forum - there’s bound to be more people able to offer suggestions.

Sorry it’s getting you down. Hope you find something to help soon.

I fully appreciate this may not be an option for you but have you considered going private & paying ?

Hi, OP. We've moved your thread to General Health now. Hope things look up for you soon.

Thank you for the responses, it is comforting to know I'm not the only one although I wish none of us had this issue!

I do have a 'can't wait' card from the bladder and bowel society and a radar key but often there is just no toilet or shops to ask in in the near area. My route to work runs past a load of estates and residential roads so there's just nowhere to go.

@CannotBelieveImAskingThis thanks for the suggestion, I hadn't heard that one. Fortunately I absolutely despise the taste of sweeteners anyway so it'll be even easier to avoid them.

Unfortunately paying for private isn't an option. Much as I am grateful for the NHS it's been over 20yrs since I started having investigations and still no closer to a permanent solution.

I don't like them either, I certainly don't use them. However, it's in an awful lot of food you'd not think of. My morning yogurt had aspartame in it 🥲. Might be worth a double check of what you eat?