Overactive bladder for years, worried about my water intake and health for the future, I’m only 25 and all I think about is using the toilet and my day is planned around toilet!

[sv96]

I have been having this problem for years! I just need to pee nearly every hour and could every 30 mins if I went instead of holding. I am hardly drinking throughout the day as I get anxious and think it will increase it and make it worse. I make tea in mornings but only take few sips, lunch time just few sips of water again and only ever drink when I get home from work. Most days or say day trips, days out I avoid drinks.

I always use the toilet just before leaving, but soon as I get to the next location first thing I think about is toilet. If I’m planning to have a lunch and drink somewhere I use toilet before and after. Cinema I had to run to the toielt literally at the end of a 2 hour film. My pregnant sister in law visits the toielt much less than me.

I also wake up 2/3 times in the night sometimes.

I have been to the GP, they promised I will get a scan but have not received appointment for months and a simple swab showed it was all good down there. It’s almost like they didn’t care.

I am worried that it’s effecting me mentally because all I think about is using the toielt, where the toielt is, will there be an toielt and what will I do if there is no toielt and eventually going to effect my liver. I dread going anywhere because of this problem. No one else around me seems to need to pee as much as me even though they drink bottles of water. I don’t remember it being this bad in my early teens but I’m 25 now and I just can’t deal with it anymore. Most my time is spent literally in the toilet.

Does anyone have any advice? Do antihistamines really work ? What can I do?

Thank you. No other symptoms btw.

I had an overactive bladder since early teenager. I have to wear a pad everyday. The Gp should give you medication, there are about 4 you can try. I've tried them all and they don't work for me. I've had urodynamics testing, cystoscopy and cysto distension. It's a long waiting game having to wait months and months for a hospital appt, chasing up referrals etc. I'm still no better

Botox injections - relaxes the bladder

So nothing helped in your case ? Do you drink lots of water ?

Wear a pad and that will help you relax a little and go longer. Some of it is in your head - you need to tell your brain to wait, that you don’t really need to go yet. If you do a bladder diary you will see that your first wee in the morning is quite a lot of fluid but your little wees during the day will be minimal amount. Your bladder will hold more if you let it.
If you have private insurance you could ask to see a physio.

Its interesting as I wear a pad and I see it as an excellent option rather than medication or invasive treatments.

Sorry, I don't have any advice about overactive bladder, but I was wondering if you'd been tested for diabetes, as this sounds similar to me when I was developing it. Hope things improve soon.

It sounds like your worries about the toilet are worse than the frequency , I generally go at every opportunity and haven't felt its something to worry about unduly. I'm not in any way and expert but I think you need to address the anxiety.

I have both stress and urge incontinence which is unusual. My bladder can only hold less than half compared to the average woman. @sv96 i don't drink much especially when I go out as I'm constantly worried about needing the toilet. I am leaking constantly that's why I wear a pad but I also need to wee all the time. There are a few treatments they can offer if the medication doesn't work like Botox. It's been a very long process as they didn't take it seriously when I was 13. When I finally saw a consultant at 17, they said I was too young for exploration. I was referred to the incontinent nurse who talked about pelvic floor exercises, bladder diaries etc.

Has your gp not prescribed you any medication? It could be that medication will solve your overactive bladder unlike mine.

No medication at all, she please she would refer me for an ultrasound and maybe a specialist but nothing happened in the last 3 months so I think she just said it to get me out. She was very rude about the situation and kept going on about spicy food which I hardly have any of.

Have you stopped caffeine? It’s important. It revolutionised my life. I can tolerate it now but it took a while for the irritation to settle.

Isn't it the case that the less you drink the more concentrated your urine is and the more it irritates the bladder?
Or is that an old wives tale?

No, it’s true.

My area allows women to self refer to the continence clinic. You need to! They’ll do a fairly routine initial assessment, then advise and help you improve things.

Mine turned out to be a fibroid and when it was removed my urinary problem magically disappeared.
I am quite angry that I was brushed off for so many years.
People used to say to me I should just try to wait longer but the thing was, it hurt. It was amazing to remember that there really is such a thing as a sensation of needing a wee that is just that, a sensation rather than pain or discomfort.

Get a referral to a continence clinic. They can help with pelvic floor exercises and bladder training, and all the different options to help.

I see a brilliant physio who is really good at explaining all the physiology and mental processes that go on with incontinence.

I have been in exactly the same position as you. Solifenacin changed my life. I'm now on Mirabegron (for other reasons) and have gone from not drinking like you, to being able to drink whatever I want whenever I want. That includes caffeine and alcohol. I'm on my second cup of tea this morning right now and I have no need for a wee whatsoever.
It took about a year on the referral waiting list before I got to see the Consultant. He was fantastic and explained things that my GP didn't even touch on. For instance if you are cold-it can make your bladder spasm and I know this happens to me.
I got as far as being in hospital waiting for a cystoscopy but was discharged after a chat with the Consultant as when he reviewed whether my medication was working, he felt that there was no point in an invasive investigation as there were no concerning symptoms in his opinion at that point.
I'll be on the tablets for life-which is fine by me as I have my life back! The process is slow, but good luck.

Can you see a different gp? You must be tested for diabetes but if it's not that then you have to keep making their life a misery until you get referred. When you get a referral phone and check about 2 weeks later that they actually have it.

@abracadabra1980 mirabegron and solifenacin do absolute nothing for me. It's weird how some medication works on other people.

Don’t give up- I remember my Consultant saying there were lots of options to try medication-wise.

Rotten luck.
I had issues caused by over medication of thyroxine. Something about the balance between progesterone and oestrogen was wrong when I had too much thyroxine. I also had long term e.coli issues that I managed and eventually solved with D-Mannose. E.coli burrow into the wall of the bladder and escape death by antibiotic. I got to know the cycles and hit them early enough to stop reinfection.

Did you know that if your urine is concentrated, it makes you need to wee even more? So not drinking is having the complete opposite effect you are looking for. I know it isn't what you want to hear but it's true.
The other thing you need to be looking at is your diet. There are a lot of things that make this situation worse. Artificial sweeteners are one of the biggest culprits.
Don't forget daily kegal exercises too.
There are lots of things to try that may work before going down the medication route.

Following. I'm pretty sure that tea irritates my bladder. I hope you get some answers. I've had this problem as long as I can remember - I used to go to the loo at primary school much more than my friends did.
One thing - I had to have an operation (unconnected) and the nurse sat me down and asked me loads of questions. I told her about getting up in the night for the loo and she said it's in the mind - to ignore the impulse and tell yourself you don't really need to go. Now, the only time I get up to go is if I really can't sleep, and going to the loo does help with that, I find.

I'm the same, have always had a weak bladder but due to my home life it wasn't investigated and I was punished for having accidents. I was so ashamed that I kept it to myself then for a long time. It's likely related to another condition that I have that affects my muscles. I have been referred to urology but waiting lists are very long here and I'm looking into going private but don't know if there will even be a fix due to the longevity of my problem.

I get how difficult it is (I'm around your age) and have the same worries about finding toilets when out etc as the urge comes on so quickly and I physically cannot hold it in. I get big pads etc prescribed by the incontinence team and this does help reduce my anxiety slightly. However, I do have frequent accidents and sometimes the pads leak and due to life circumstances I might have to look into adult nappies soon which I'm trying to manage my feelings around. I feel a lot of shame.

It might be beneficial to see a physio who treats women's pelvic floor, as a tight pelvic floor can cause bladder symptoms, and mimic the symptoms of cystitis or UTI.

I feel your pain. I have bladder problems and I go to the toilet around every 10-15 minutes. I have no idea where it comes from as I hardly drink for this reason, yet I pee full flushes every time.

DS had an overactive bladder after lockdown, when they had to be escorted to the loo at school to make sure they didn't leave their bubble. The anxiety of having to ask and then wait and then go to the loo knowing a teacher was waiting outside for you to finish was absolute agony. He refused to drink anything after 6am and eventually refused to go to school.

Not drinking will definitely be making it worse, but I can completely understand where your anxiety is coming from.

Definitely follow up with your GP to see if the referral actually happened. The urology team will be able to help you, both with investigations and managing the condition as well. It sounds as if you could benefit from medication, bladder training, some psychological support, as well as physical investigations. Your GP sounds awful if she just dismissed the impact on your health and wellbeing.