Overactive Bladder Help!

[Mumma02]

So I was diagnosed with an overactive bladder following a cystoscopy last October after months of hell! Mainly urgency but constantly. Symptoms started about 2 months after I had my second child . I went back on the pill when my baby was 11 months old to try and improve my low ferritin. However 2 months after this started experincing debilitating headaches and neurological symptoms and went down another route of hell and ended up seeing a neurologist. However the majority of time I was on the pill I didn't experience any overactive bladder symptoms! I decided to come off it last month to see if it would ease my headaches but 2 days after I should have started my new pack, all my bladder symptoms came back and I feel like I'm in hell again! I've so far managed to avoid the medication the urologist gave me because my symptoms went away. I've read the tablets give horrible side effects and I don't want to be stuck on medication for life. Can all this be a hormonal problem effecting my bladder? I can hold on for ages but the urge never goes away, it's definitely not a case of "retraining your bladder" for me. So fed up.

I've been taking oxybutinin for around 12 years. The only side effect I have is slightly dry eyes, which only affects the contact lens I can use. It's life changing medication.

Thanks @Mabelface do you know the cause of your OAB and did they say if medication will be life long? I had no idea it was safe to take for such a long period so that's reassuring.

Just one of those things unfortunately. I will be on the meds for life, but I don't care. It means I can live a pretty normal life now. No more pads!

Hi, I was wondering if you ever made any progress with this? I am 6 months postpartum and suffering similar symptoms - am not incontinent and could hold on for long periods of time but feel the constant, uncomfortable urge to go. Was prescribed solifenacin by GP which seemed to help for a few weeks but feel like it has stopped working now. They have referred me for physio and won’t refer me to anyone else until I have undertaken physio. Am also seeing a private physio but just not feeling much progress.

I just bought a Kegel8 Ultra 20 for something different (rectocyle and prolapse) and had it for a week. I can already feel the difference using it twice a day. It has a programme for "urge" incontinence on it, perhaps ask the physio about whether this sort of thing might help you?

@ecg15 it comes and goes for me. I had it non stop for the best part of a year after having my son though which was debilitating. Havent been offered much help or support from the gp - but quite depressing living with it when it does flare up!

Not read the full
Thread but have you tried D Mannose @Mumma02

@Mumma02 it’s awful isn’t it? Is there anything you did which you think has helped to get it from ‘non stop’ to coming and going? Are you on any medication? It’s really difficult to find people in the same position - most people with OAB talk about incontinece or rush to the toilet or needing to go regularly - I haven’t met anyone who has just felt the constant feeling of having to go even though they don’t.

I've had it since the birth of my daughter (20 years ago). I take Regurin/ Solfenacin/ Vesicare which helps a bit. I also think it's hormonal in my case and linked to getting older.

I'm not incontinent but sometimes have the symptom you describe of constant pain and urge, usually on holiday. I think it's related to not drinking enough in my case and also to atrophy. I'm 62.

Also suffering here. Felt like I had a UTI back in April, test came back negative and I've had the feeling ever since.

I've tried solifinacin and Oxybutynin which unfortunately didn't help, I've had an ultrasound scan which showed that my bladder was still 50% full after going to the bathroom, hence the feeling that I always need the loo, because it is never empty. Then this build up becomes painful. I have been prescribed Amitryptaline which helps the pain and does help the "feeling" of needing to go but it's not helping enough to make me feel "normal".

I am under the care of a urologist, I use the word care lightly as he doesn't seem interested. He has booked me in for a Urine Flow Test next month, as he said it sounds like either a blockage in the urethra or the bladder muscles not working correctly. I think it's the latter, although why I don't know. My youngest child is over three so it's not related to childbirth.

Who knows.

No-one seems interested in these issues but they're actually life-limiting. Pita living your life around the availability of toilets.

@thewinehasgonetomyhead sorry you are not any further forward. My GP has started me on the higher dose of solifenacin today so will see how that goes, I’m hoping it helps even just a bit as this constant pressure is really debilitating. In the meantime, I have booked a private consultation with a pelvic floor expert urogynaecologist. My GP had to write a referral letter which they were quite happy to do - which is strange considering they aren’t interested in referring me further in the NHS system. It’s very expensive but I am at my wits end so hoping I will at least get some answers from him. Will update everyone on how that goes.

@ecg15 at least your GP is happy to refer you. It's strange how each GP is vastly different, mine were happy to refer me to a urologist, and I have been very lucky that they referred me to a private hospital so I don't have to wait too long. Our local NHS waiting list for an NHS referral was 2022/23
Be careful with the solifenacin, once my GP increased my initial dosage, it then put me into retention where I struggled to go at all.
I just wish I had some answers. It did push me to the brink of depression, as it dominates my life so much. But I've tried to push through that and just get through one day at a time. Sorry you are experiencing the same. I wouldn't wish it on my worst enemy.

I have an overactive bladder and finally got to see a urologist this year. I was put on meds about 3 years ago by gp but they had horrendous side effects. So the urologist gave me a new medication called mirabegron and honestly it's made such a difference, no side effects but I do need to get my bp checked. I had to change the way I go to the loo also, lean forward when peeing and then after going to the loo stand up and put your arms up in the air then sit back down again and lean forward.
I think I have a review coming up and if it hasn't improved much then going forward they might give me bladder botox. Honestly the whole thing is horrendous, people make fun of me for saying I need the loo so much but it really affects every bit of your life.

@thewinehasgonetomyhead thanks for the warning about the solifenacin. After again feeling an initial improvement, I now feel like I am having to squeeze out a pee, which is probably not ideal considering I have a prolapsed bladder. I am thinking I will have to come off them but will speak to GP on Monday. Did you have any effects when you came off it? I am scared that when I come off my bladder issues will get much worse. Did you try anything else after that?

Please read up on pelvic floor dysfunction, which can cause bladder irritation, a fact that urologists somehow don't always know. Kegel exercises can exacerbate the problem if your pelvic floor is already tense.

This has dominated the whole of my adult life, and I am now 48. I also always have blood in my urine. After multiple cystoscopies, etc, over the years, I found a good female GP who was empathetic. I take Solifenacin when I need to, and amitriptyline every night, which means I'm not up and down all night. If things are particularly bad, I take Pregabalin, which helps with neuropathic pain. It's very good. I've also had to change my mental outlook over the years. I get incredibly bad anxiety with my bladder pain, as it overwhelms me. I try to see 'flare ups' as blips, and try to convince myself that it will pass eventually. It's an awful condition, and people can't empathise u less they've been through it. Good luck x

@ecg15 no I didn't notice any problems coming off it. I had the same problem with Oxybutynin unfortunately, but these medications work in a similar way so my body just seems to react in this way. It's not listed in the side effects in the pamphlet, but upon googling I found it can be a common side effect.

The only thing that has helped me is Amitryptaline, it really helps with the pain. It also helps with the frequency. It's not perfect and some days are better than others but it has definitely helped me feel like I can live my life more positively now. Unfortunately though it seems to stop working as efficiently after a while and I need to up the dose which will only take me so far.

How are you feeling now?

@inininsomnia yes I have often wondered about this.

@HarryBlackberry1 do you know what the difference is between Amitryptaline and Pregablin?

Headintheclouds, I have no idea at all. I only know that pregabalin is my final resort, and touch wood, it helps. It does make me feel a bit spacey, and I wouldn't feel comfortable driving after taking it, but it is good. Helps with that awful feeling of pressure and needing to go.

@HarryBlackberry1 can I pls ask if you have gained weight? That's one of the side effects of amitryptaline. I have an appt with my urologist in a few weeks I may ask him about Pregabalin.

I've never put on any weight with any of the meds. I'm not sure how old you are, but I started taking Vagifem fairly recently, and that seems to have helped slightly too.

OP how are you doing???

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