constant urge

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I've had mild urge incontinence for years without too many problems. Since January I've felt the constant urge to pee with no relief but worse after some foods/drinks. I can't tell when I really need to urinate so I just go by time. I've put myself on a very stringent diet avoiding tomatoes, citrus, alcohol, caffeine etc . I've seen two consultants and my GP and been prescribed betmiga which made me very unwell and exacerbated my IBS which I've also had for decades. I've been given no advice by either my GP or either consultant. The second consultant told me there was no medication I would tolerate and no other treatment. I have been given no advice about bladder training or indeed diet. I am no better after 6 months of eating a boring bland diet but dare not try introducing anything that could make me worse. I have no appetite, sleep badly and live on my own. I am getting increasingly depressed. Does anyone else have this constant urge to urinate?

 

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Hi @Rosieb and welcome to this forum! This is a place where you can speak freely about incontinence and everyone is highly supportive and completely non-judgmental. You will get lots of advice and many sympathetic ears.
From what I read here it sounds like you're avoiding the things you need to as far as diet is concerned. Are the 2 consultants you've seen urologists?? If they are not, then you may do well to consult one. But if I were you, I would try to find out about other medications you might be able to tolerate. Although I don't take meds myself, many of the members here do and they can give you the full skinny on what works for them and what doesn't work. I would think they have the same meds, or at least something very similar in Britain. And please feel free to ask individuals here anything you want to know about medications.
If I'm not mistaken I think there are continence nurses in Britain who may have the inside scoop on bladder training and diet. I think spending six months eating a boring bland diet would not do wonders for the ego or the taste buds and there are also dieticians who could give you ideas on how to "rev up" your menu but still keep your bladder happy!
From what you say it sounds like you have overactive bladder (been there, and am doing that!!! Wearing absorbent underwear helps) but you do need to see a doctor, and/or even a continence nurse to be sure.
So in short, it would be a good idea to do a little digging to find other professionals who are more well versed in bladder issues than just a GP or whatever those consultants are. But you came to the right place here to introduce yourself and ask for answers.
I hope you stop in when you have a question or a comment or just want to vent! We have members from many places in the world, as well as quite a few from Britain.

 

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Thanks for your reply. Yes the two specialists I saw are both urologists though I think I now know more about OAB than they sppear to. You seem way ahead of us in the US and I’m getting lots of information from a company called Medivizor who are brilliant. I feel I need to go to my GP with a definitive plan. I did ask to be referred to an incontinence clinic but no luck. Everyone here seems mired in the Covid pandemic and pretty much everything else seems to have ground to a halt.
Again thanks for your response
Rosieb

 

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There is a national incontinences association. My past therapist was President. I don't know if she still is, she was offered a job by Mayo Clinic and took it. I was and am sad that she left, happy for her. So I have never contacted the association but was given instructions verbally on retraining my brain and bladder. I was hooked up to a machine where it senses the impulses to the bladder from the brain. Then they teach you exercises to strengthen your bladder. The machine is hooked up to see if you are doing them right. I am a brain tumor survivor and lost function because I was sick for so long. This takes work but it helped me. The brain controls the body. Retraining your brain and nerve endings is hard but not impossible. Good luck. Sounds like me. By the way the name of the physical therapy place in SW Fl. that specializes in this is FYSICAL. We need to be our own advocate. Good Luck. The are finding by exercises stroke victims are able to gain function back. The body is amazing. I pray a lot also.

 

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Rosieb: I noticed the "I have no appetite, sleep badly and live on my own." Any chance you have sleep apnea? In my experience, it can leave you tired enough that you aren't in touch with your body the way you should be. It can be dangerous, too.

How about exercise? I've been at both extremes; lack of exercise seems to contribute. Although certain movements can cause "squirts".
BarbraDrabek always is worth listening to, Billliveshere too.
If you are in England, maybe you don't have to worry about Insurance, like so many in the U.S.

 

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Hi and thanks for your response

In theory we don’t have to worry about insurance in the UK. The reality is that the waits for the NHS are so long that most people who can afford it pay for themselves or have private insurance Also your payments in the US allow for far more research and much better treatments. Waiting over a year for a treatment that is way out of date is usual in the NHS. When the NHS was first introduced it was excellent but no longer- and I’m not talking post-Covid. A lot of Europe is now way ahead of us.
I don’t have sleep apnea and force myself to still do a lot of exercise ( I used to be an ultra distance runner and still fairly fit)
Thanks again

Rosie

 

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Thanks to Barbara for her response too
I’ve asked about bladder retraining and other therapies and got nowhere with my GP. I’ll have another go

Rosie

 

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Didn't realized you were not in the states. Try researching. Write to the medical association there or someone you can get attention. I know I was misdiagnosed with fibromyalgia and here it was a brain tumor married to an alcoholic. So I had to learn to take care of myself, I live alone also. Not fun. I pray a lot, I know I can call my church where I have donated and volunteered before when able. I also have sleep issues, have a c-pap now and went to sleep therapy. Try to get in to see someone where the can help you.

 

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I remember all of this is temporary, it is not eternal. Blessings-Lord please grant this woman help and direction so she may do your will.

 

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Hi @Rosieb, That was an excellent explanation of the NHS that you offered and it clears up misconceptions some of us over here have with it. It's discouraging that you have to wait so long for non-emergency treatments which may turn out to be outdated, and that many people are forced to pay for a treatment out of pocket or buy private insurance. How long ago was the NHS plan introduced? Am I guessing correctly that the reason it is not much good now is because it is overwhelmed with patients and maybe too few available doctors???
I too, try to exercise mainly by walking a lot. I really enjoy it and it helps keep me in shape. So, please continue to get your exercise because getting out in fresh air and enjoying nature really helps lift your spirits.
If it were me, I'd try to introduce different foods to my diet in small portions to see how well it's tolerated.
I hope you do have "another go" with your GP and try to insist that he refer you to a continence nurse, or try to find a hospital or clinic that has one.
And here's another thought: you're the only one who knows your body as well as you do! After all you live with it 24/7/365, day in and day out. So who is better qualified to know just what your body needs and what makes things comfortable and to work right for you???
So good luck in finding out more. And remember, the forum is always here for you, 24/7/365!!

 

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I've been thinking about your problem ever since this morning. It reminds me of having a uti which is all consuming when I get one, that constant urgent feeling and I just can't function unless I'm healing on antibiotics . I found having a pad in my underwear so the inability to not drip or have a spurt is at least contained.
I really sympathize this is something that turns one into a hermit and obseessed.

Perhaps you should do a new thread titled OVER ACTIVE BLADDER RELIEF IN THE UK as you pointed out there are different medications and types of protective wear or medical therapies but this will draw the attention of our many and intelligent UK members if you title it as such.

 

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I sympathize with that, too, as I've had UTIs myself and they are definitely no fun!! In fact the discomfort is so real that I quickly find myself going to the doctor and getting an antibiotic. Only when I start taking the meds do I start getting any sense of relief! It is very uncomfortable.

 

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Some good thoughts, Billveshere. Exercise is so important. It provides the cells with energy so we can move and exist.

 

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Rose, maybe if you tell them it is standard in the USA they will listen, then may get pissed also. You can search on line to get some info on bladder training. We have to be our own theapist sometimes and doctor. Start now. Blessings-in prayers. Barb

 

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@Rosieb hi, I get the urge to want to go every half an hour so i empathise with you. Have you had any tests done to see whether you have incomplete bladder emptying? Have you had urodynamics done? Have you been tested for diabetes? Is there any family history of m.s, cerebral palsy, Parkinson's? Have you had an ultrasound done on your bladder and kidneys and urinalysis carried out to rule a UTI being the cause?

You need to go back to your GP and ask nicely to be referred to a continence specialist nurse please.

Wishing you a speedy recovery from this tortuous feeling. I have Botox injected in my bladder and it really helps but the downside is I have to catheterise to empty my bladder and it only lasts between 6 to 12 months before needing to be done again.

 

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great advice Iaalaauk. Start training the bladder, I needed an alarm clock so I would void every 2 hours. Otherwise I forget, especially when trying to drink more water.

 

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@Rosieb

Hello
I had the content urge to urinate.
I'm a male and went specialist to specialist.
ER many times until was referred to urology, urology to pt then gave up after 15 weeks I was depressed and had bad Anxiety do to the unknown with this issue.
I am cured of this now.
I believe your issue is caused by something called a hypertonic pelvic floor,it a form of pelvic floor dysfunction.
In women it is more common,I'd stay away from all kegel's as these will make it worse.
Ibs is known to cause this as the straining will cause those pelvic floor muscles to become overly tight.
I'm on a reddit page what many that have this and seen success in stretching the pelvic floor muscles.
The only way to cure this is to stretch your pelvic floor muscles twice a day.
You dont state your age if you can please tell and Also all your symptoms.

You need to find a good video on deep Pelvic floor stretches on YouTube and do these twice a day.
One time before bed and when you awake.

I'm here to listen and to help

 

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Hi Rosieb,

many things have already been said but here is my 2ct on the subject.


- One thing that I don't think has been mentioned is drinking.It may sound paradoxical at first - but drinking a lot reduces the urge. This is because concentrated urine irritates the bladder wall more.

- I don't know if you are a woman or a man - but if a man: When was your last prostate examination? If it's been a while, then you should definitely have it done, because swelling can not only mean cancer, but often has a negative impact on an OAB problem.

- Has a cystoscopy been done? If not, this would certainly be a next measure to exclude e.g. damage to the bladder mucosa (keyword PBS / IC).

- Another possibility could be a biofilm infection - these are germs that encapsulate themselves in the bladder wall and repeatedly lead to inflammation (OBBI) - unfortunately they are very difficult to detect.

From my own experience I can tell you about two other things that have a significant influence on me. I suffer from IC and am type-2 diabetic. Even if none of the urologists wanted to hear this so far, I am pretty sure that there is a connection. When my blood sugar is high, I have a significantly higher urgent pain symptomatology. The key factor for me is probably my weight. Currently I have a BMI of 29. From 30 it gets really bad and the more I approach 25, the less continence problem I have and my blood sugar is also significantly better. Unfortunately, I have big problems to get there, because just Corona and the home office ensure that I move even less, which is neither good for my bladder nor my sugar...

 

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@Rosieb Hey! I've just come across this thread. I'm also UK based and I feel your frustration with the health service when it comes to incontinence. I've been waiting for a urology referral since last April which keeps on being pushed back due to Covid. I suffer from OAB and after dribble and also have IBS issues and I agree that there's no real lifestyle advice. My incontinence issues have become a lot worse due to Long Covid and not once has a GP asked me how I was dealing with it. The only person who's taken any interest was a medical student when I was in hospital.

@MichaelDahlke Interesting re the concentrated urine, I had no idea but it explains a lot! I was always bad at keeping myself hydrated, partly due to forgetfulness, partly due to not wanting to have accidents. I've been working at keeping myself better hydrated and have found that it has changed my urination habits. I'd need to urinate all the time before but now I void more in one go. Whilst I'm not running to the toilet all the time, the downside is I get no real warning beforehand (although, more often than not I didn't make in time when I wasn't properly hydrated). Swings and roundabouts I guess. I do feel better in myself for staying properly hydrated though.

 

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I think starting a proper hydration routine and staying with it is the key to a lot so it's good to keep with it! I know there are tradeoffs re the incontinence and all of that but overall a constant state of dehydration is much worse and can lead to other health complications which you (nor any of us) want. So it's better to stay well hydrated and have more products available but overall it's better for your health, hence one of the tradeoffs!