So fed up! :-(

Kidney and urinary tract
1

Hi there, A couple of months ago, I experienced what can only have been a sudden overactive bladder episode. Had to walk about 3 minutes to nearest loo in town centre. Felt like 300 miles. Really bad pain in my bladder. Could barely put one foot in front of the other. Was shaking and feeling sick in fear of wetting myself in the town centre - I'm 59 by the way. How I got to the ladies before I had an accident I will never know but it left me badly shaken up all the same. That was 20th July.

Since then I've been terrified of having another OAB episode. I've had milder episodes. Perhaps they weren't as bad because I was nearer a toilet at the time. But it still requires me to get to the loo at the speed of Concorde.

So now I'm nervous of going anywhere where I don't know where the toilets are. And I get stressed before I go anywhere too.

As well as the OAB episodes, I also get times when I can hardly wee at all, both stress related I think. I noticed last Friday from about 12 noon till about 11am on Saturday morning, I could only do small wees. I think that was because of the tension surrounding having a weekend away. I wasn't great all weekend either.

Now I'm home - got home 2.30pm yesterday, I find im back to hardly weeing again. I think this is because I'm fretting about my weekend with the bladder problem and still tense about it all.

It was only a week or so ago, before the weekend away, that I stayed at home all week because none of my friends were available and nothing to go into town for either. I noticed that my urination was completely normal all week - till the Friday afternoon anyway.

So what I'm saying is I can either hardly urinate at all, or I'm getting OAB episodes (I got one in the car on Saturday morning going down the A59) or I find I need to go too often, like yesterday afternoon on my way back from Skipton.

Trouble with not being able to wee hardly at all is I'm scared the amount of liquid in my bladder, till I finally empty it, will damage it, or cause it to give me an OAB episode eventually.

So I'm quite upset really. I'm being seen by the bladder nurse. But I'm going to have to make her see that this problem is mostly psychological since my bladder works normally when I'm not stressing about it. I think that episode in town really shook me up and impacted on me psychologically.

Also, like today, so far I've drank almost a litre but daren't drink much more incase it damages my bladder with not weeing normally and "Retaining" almost everything I drink.

Anyone experienced or experiencing anything like this?

Thanks for listening.

2

I've had some of the same symptoms as you.    I sometimes get a "feeling" or "pressure" I think it is my bladder muscle.    I think I involuntarily tighten it when stressed.    Sometimes I can "go" normally, other times it is a bit trickly.    I find if I bend over slightly the urine comes out more easily.     When I'm really busy I tend to forget about it but I don't deny I still like to know that I will be able to find a toilet when I want one.

You will probably be sent for an ultrasound to see if you are "eliminating" all the urine in your bladder or retaining some after you have gone to the toilet.   It's no big deal.  You drink a lot, the ultrasound goes over your tummy and measures what is in your bladder, you then run to toilet and come  back and the ultrasound measures what is left, if any.     Even though I had feelings of needing to go when I didn't need to go, I was told I was fully emptying my bladder which was a relief.  They did find a fibroid in womb (but what woman doesn't have a fibroid) and that might be pressing on my bladder sometimes.

I was put on overactive bladder medicine but it did nothing for me so I was taken off it.     I have definitely improved, but funnily enough now as i'm writing this I can feel my bladder muscle quite tight.   This will be because i'm thinking about it because I was fine earlier.

I used to dread going to toilet but I've just remembered I used to sit on toilet and tell myself to relax, it will come out and blow air out my mouth.    It is hard to tighten your muscles if you are blowing out.     How strange that now sounds to me as I know now I can go.   

I think there is a lot of hope you will get much better.  I'd say i'm about 90% normal now which is great and i'm very happy with that and i'm not taking any medication.

Good luck,hope you get on ok.

 

3

HI Vicki, Thank you for your reply to my message. I have just typed out a long reply to you, only to find the message wouldn't post so I'm just going to hope this short one will send, then try again with a longer one tomorrow. Shirley

4

Hi Vicki, Will now try again. We sound similar in as much that we involuntarily tighten our bladder muscles when stressed. If it's not my bladder muscles it's the sphincter that allows urine to flow through or something. I was well stressed yesterday about it. Hardly peed all day. Ended up ringing the doctor for reassurance. Also ended up emptying my bladder at 6.30am and 8.15am so a lot of urine in my bladder till the early hours and I was scared it would damage my bladder but Doc said I could hold about 2 litres without damaging it! Was surprised by this. Yes I am better on days I can forget about it too. Will see if this posts and continue after lunch.

5

Glad the last message posted. Yes I've had my bladder scanned at the Bladder Clinic. She said I was emptying my bladder so that was a relief to me too. I know the scans you are talking about though and I must admit that I have felt like I wanted to pee when it wasn't necessary either. I don't think I've got any fibroids.

Glad things are improving for you re your overactive bladder. Knowing you were taken off the medication because it didn't help you, what do you put your improvement down to? Yes my "Muscle" tightens up when I think about it or get stressed about it too.

That is a good tip about sitting on the toilet and blowing air out. As you say, it's hard to tighten muscles if you are blowing out isn't it.

Wonderful to know you are 90% better and you are not taking any medication. And thank you for saying there is a lot of hope that I will get much better. How long did you suffer before you saw an improvement?

Thanks again for your message.

Shirley

6

Hi Shirley

I started with this "problem"  in March.   I changed my diet drastically to eat very plain and healthily and drink only water or water with lemon, nettle tea, water with some root ginger in it.    It was a slow process to get better.    After a few months I started to introduce a little rubbish food e.g. chocolate and ice-cream and I was ok.  By August I had really improved.

 Very interestingly, i've been through a lot of stress the past few weeks and i've returned to eating rubbish. I've also taken fizzy drinks again.   My problem is back.   I think it is my "detrusor" muscle (to give it, its posh name) that I tighten up without meaning to.    Like before, I can feel it quite tight just now because i'm thinking about it.

I can only speak for myself,but I find if I drink a mug of warm water with a squeezed lemon in it, the next time I go to the toilet, it comes out easily and the flow is good.    I had a can of fizzy orange earlier today and i'm finding going to the toilet difficult.  I know it doesn't sound logical but I think it is because lemons are alkaline and  they are good for the urinary tract.

The proof in my case will be if I can turn this around again by eating and drinking healthily and if I can get the stress cut down.    Stress is really hard because usually it is caused by things that happen that are out of our control.   I don't understand my problem and the hospital couldn't give me an explanation.

I'm glad your ultrasound result was good.   We are all different.

One day maybe you could try only taking the following drinks - water with half a lemon squeezed in it, nettle tea, mug of hot water with some basil leaves in it.   When I do that I find it  much easier to go to toilet.     

I hope you get better.   Sorry I can't give a precise do such and such and you will be fine.   It was a massive case of trial and error to get me better and as I said - I have taken a step back the past week so i'm not cured.

I really hope you get some improvement but unfortunately it does seem to be a slow process.

 

7

Hi Vicki, Just a quick one before I go to bed to say thanks for your message. Also you mention your detrusor muscle. That's the one I meant when I mentioned my sphincter muscle "Or something" in my earlier message but I forgot the name of it - the detrusor muscle. I think mine definitely tenses up of its own accord when I'm tense or stressed and theres been a lot of stress in my life during the last couple of years. Anyway I will finish this message tomorrow. Shirley

8

Hi Vicki, Back again. So your problem started in March. Mine started 2 years ago with Vaginal Atrophy. Then I told my doctor I thought it was Interstitial Cystitis but she was having non of it. Then I was having problems wanting to wee all the time. But things changed after my hip replacement at end of March when I found I could hardly wee at all during the day but my bladder emptied in the early hours when I was relaxed. Then it changed when I had an over active bladder episode in town that scared me to death. Since then I've varied between not being able to wee hardly at all to wanting to wee too often and also getting strong urges when there are no obvious loos near by.

You did really well to change your diet like that but I'm sorry your problem is back when you were much better in August. I've had a lot of stress in recent years. And I'm an emotional eater. I'm not surprised you have turned back to junk though. I do it all the time and I know I'm stressed. Yes I think my detrusor muscle has a lot to answer for too.

I made an interesting discovery last night. I wasn't emptying my bladder all day yesterday either. Now I'm not one to lay on the sofa much but I did last night and I'd managed to urinate properly within a couple of hours as a result. So I know how to get my bladder to empty before bed time.

I will also try drinking warm water with a squeezed lemon in it and see if that helps too. Your explanation is probably right.

I bet you can turn it around again by eating and drinking healthily and lowering your stress levels. And yes stress is one of the hardest things ever to deal with as Ive found out to my cost over the years . My stress comes from my 22 year olds not being in work and losing my mum last year, also hubby retiring 6 months ago.

Yes thanks Vicki my scan was good which was a relief given I wasn't peeing properly during the day but I was drinking 1.5 litres and I was scared what would happen as a result of holding it till the early hours of the next day when I was relaxed enough to be able to empty my bladder properly.

I will definitely try those drinks you mentioned. Thanks for those ideas.

I hope you get better too Vicki. I can understand it's a slow process, trial and error, but I'm sure that whilst this is a slow process, we will both be ok in the end. :-)

9

Hip replacement was at end of April.

10

You have had a terrible time, i'm not surprised you are stressed.   I too thought I had interstitial cystitis at first because it was painful to urinate and no infection was showing.   Now I think I had a UTI or an irritated/inflamed bladder and taking a bland diet let it heal.     I also think stress has a lot to do with it and the Doctor did agree.

Now when i'm out I always ensure I visit the loo when I see one.   It's been suggested I could have a kidney stone but none showed up in my ultrasound. Maybe I have a very small one but ive been told it is too soon to have another ultrasound because it would just show the same result. As long as i'm not in pain and managing to go to toilet i'm accepting i've changed.   At one point I hated going to the toilet in case I couldn't go.    Fortunately the drinks I mentioned helped that tremendously but I know that wont be the the same for everyone.

I really hope you see improvement soon.   I've been told countless times to stop worrying about things that might not happen, but that is so difficult.    

Take care

11

Thanks Vicki, It's certainly not been easy though there are people a lot worse off than me of course.

I was convinced about the IC too but no the doc said I've not got it. There is an IC support forum on Facebook that I joined at the time. People are on there with other bladder problems too. So I go there once or twice a week. Definitely helps to know I'm not on my own with these problems. Agree totally about stress being a lot to do with it. It's funny I never get any sym

12

Hi Vicki, Sorry. I pressed "Reply" too soon by mistake.

I was saying it's strange how I never get any urgency or frequency symptoms during the middle of the night when Im totally relaxed in bed. My urination doesn't grind to a virtual halt either. It's like things (Urination wise anyway) come back to normal when I'm totally relaxed. It's this fact that leads me to think it's largely a stress issue during the day when I leave the house etc.

Yes I always go to the loo too when I see one and at the advice of the bladder nurse I wear Tena Pants too, but only when I leave the house. She thinks that the pants may give me confidence, along with pelvic floor exercises.

Glad the kidney stone isn't giving you any pain. Must admit I've dreaded going to the loo too for the same reason. Frustrates me to death when nothing happens (Or very little anyway) because as I've said before, I'm scared of retaining all that liquid, even if it is only for several hours. Also scared it will trigger an overactive bladder episode. I must try the drinks you mention and see if they make any difference.

Yes I've been told to stop worrying too, husband thinks I'm over reacting! But it's not easy to forget something that scares us to death is it - the OAB episode in town that day in my case. That was the start of my urination problems.

How much do you drink on an average day? I drink 1500ml or 1400ml. I asked the Doc the other day how much a bladder could hold without it being damaged and he said 2000ml! I was surprised with that. Hubby says your bladder is like a balloon that stretches. I realise that but I'm still surprised it will hold 2 litres!

Shirley

:-)

13

I've been really busy this week-end and interestingly it has made me think less about going to the toilet and I think i've been holding on for much longer before I go.   

When I go shopping I do take advantage of using a particular toilet.   This takes some of the stress away because I know i've been.  Some people have bladder weakness but i'm the opposite.   My muscle is tight caused by me involuntarily clenching it.      

I don't know how much i'm drinking a day.   When this first started I used to take note of every drink and every food I ate but now I can almost do what I want as long as I take alkaline type drinks.   As we all know everyone is different but they definitely increase my flow.    

I hope my experience can give hope to others.  It's so worrying when something goes wrong with your body.   I couldn't undestand why one minute I was fine then for the next  6 months I had problems.  For me changing my diet helped but I am not cured.    I do still feel pressure sometimes and my flow can be slow.  I'm just grateful i'm not in pain.  I can live with the symptoms I have now whereas earlier in the year it was very difficult.

Take care and I really hope your health improves soon.

 

14

Hi Vicki, Good to hear about your busy weekend and thinking less about going to the bathroom. Ive just been to get my volunteer position back at the hospital shop. Im hoping this will result in me being more relaxed too and not worrying about my bladder problem so much.

Yes I always go to the ladies too when I go shopping. I agree it does take some of the stress away Though my bladder nurse tells me not to go "Just in case". I feel like I'm involuntary clenching my detrusor muscle too but only when I'm really worried, tense and uptight like I was over the weekend at home. When I go out I find I want to go, especially where i can't see any obvious loos and then my anxiety escalates and makes things worse. So the effects of my anxiety either result in hardly being able to pee and have very little urge to the opposite!

Must remember the alkaline drinks to help my flow. I drink 2 cups of decaff tea in the morning then 500ml of Barley Water squash in the afternoon and 2 hot drinks in the evening. Sometimes a bit more. Sometimes a bit less.

Yes everyone is different. Very worrying when our bodies go wrong. I'm glad you're not in pain and glad changing your diet helped.

I was so worried over the weekend that I rang the surgery and asked them to ring me back. So Doc rang within 10 mins. He agrees my problem is anxiety resulting from the OAB episode in town that day. However to be safe, he's arranged for a bladder ultrasound to check I'm emptying my bladder properly before anything else happens. Not looking forward to drinking a lot in one go though. Dread it triggering an OAB episode or not being able to go to loo for ages!

Then yesterday I got another appointment through from Bladder Clinic. So I think nurse at Bladder Clinic will be surprised that I've been scanned at hospital by the time I see her two weeks today.

As it happens I've not been as tense about the condition today and feel better in myself emotionally speaking too. So I do feel a bit better.

Take care

Shirley

15

We seem to have very similar symptoms.  I am sure stress is a major contributor, but I think there is "something" else involved too.  

After drinking so much for the ultrasound I got very painful heartburn/indigestion.   On the way home I had to stop and buy indigestion tablets.    Within 5 minutes of taking them I was fine again.  If this happens to you keep what I said in mind. You must let me know how you get on.

You should try the alkaline drinks.   I don't find water has much effect on my flow, but if I take an alkaline drink my urine flow really increases and comes out as strongly as it used to before I took this "condition" whatever  this condition is.

I'm sure working at the hospital shop will help.   You will be so busy helping other people you will probably not have time to think about what you body is up to!   It's such a difficult subject.   We are not deliberately thinking about it.  Its completely involuntary.

Take care, hope you keep improving.

16

Yes we seem to have similar symptoms don't we. Yes stress and being tense and anxious is a major factor. I've been thinking my situation through a bit more and going to the day I had the OAB episode. It may have been my own fault! Bearing in mind that since my hip replacement, the feelings in my bladder are weakened a lot. That Wednesda morning I drank much more than usual because Doctor said I wasn't drinking enough and also it was one of the hottest days of the year. But my urge feeling wasn't there. I had drank 1.5 litres by lunchtime and that is a lot for me.Had a wee before I went down to the bank and thought nothing of it till I got major pain and urge to wee that was overwhelming. So I'm thinking my urge feeling didn't kick in till my bladder was "Too full". Since then I've been struggling with urination and all this. I'm now booked in for a bladder scan on Wednesday morning at 11am 20 mins drive away. Got to drink 1.5 litres. Scared of having an accident either on the way there in the car or at the hospital. Will be glad when it's over and done with. Will see if I end up with the heartburn/indigestion like you did. And yes I will let you know how I get on. Yes alkaline drinks are a good idea. Interestingly I layed on the sofa again last night and managed three pees by 9pm. So that shows its about relaxation etc. The more relaxed I am, the better things work.

Yes I think the hospital shop will help too. Anything to get my mind off this problem. Yes a really difficult problem. We aren't thinking about it deliberately. It is totally unintentional isn't it. At least by Wednesday I should know, or they will, if there is anything wrong with my bladder or if I'm retaining etc. It does feel that way when I hardly pee during the day. But then my bladder empties as normal in the early hours.

Hope you are Ok today and having a decent day.

17

Yes there is part of your problem that is different to mine.  I fully understand it must have been quite traumatic when you are out doing your "stuff" and that happened.   Also i've never had a hip operation and surely that must have some bearing on your symptoms.

You are so right.   We are not thinking about it deliberately.   What surprises me is that so many people have similar symptoms (ok there are variations) but what I find very annoying is we all go for tests thinking that will resolve the problem but for a lot of people the tests don't give an answer and basically you are left to try and work things out for yourself.

I cant explain why at one point I had pains on my left side, right side, my flank at the back and both sides of my groin area. It is all guesswork. I never got a proper diagnosis.     I'm just glad that after 6 months most of the pains have disappeared. It could be through changing my diet,   I can't say for sure and I know it wouldn't work for everyone.   

I can only presume I had a UTI, though blood and urine tests all negative, my bladder got irritated and sore and because I sort of followed a diet for interstitial cystitis it healed.   But if I had had interstitial cystitis it would not have healed and I would still be sore when I went to the toilet and thankfully i'm not sore any more and I have been eating and drinking "rubbish" e..g chocolate, and one or two fizzy drinks without any bad effect.

Let me know how you get on at your ultrasound and when you will get your result.   

x

18

Hi Vicki, Yes very traumatic. I didn't actually wet myself and how I managed not to, I will never know. But it's impacted on me psychologically, no doubt about and and I've been scared of having an accident ever since. Yes I think the hip operation does have a bearing on my symptoms in as much that since then, unless it's urgent, my urge to wee is much weaker. I've had 3 drinks so far today so 750ml altogether and I have barely no urge feelings. So tense about it that im sure I'm tightening my detrusor muscle or sphincter and its stopping me weeing properly when I do go to the bathroom. Unless it's in the early hours of course.

Yes I bet this is what happens when I go for the scan next week. I bet there are no answers and i have to work things out for myself.

I'm glad all your pains disappeared too. Yes it could be through changing your diet though as you say, it wouldn't work for everyone would it.

Oh yes UTI's are a pain arent they. It's interesting that you followed an IC based diet and your bladder got better. I know that soreness on having a wee with a UTI. Dreadful. Glad you've not got it now and have been able to eat chocolate etc.

Don't know how to go about having the Ultrasound.

It's a 20 minute drive to the hospital and I really don't fancy driving 20 minutes with possible queues when my bladder is full. Appointment is at 11am for scan. They said I'd to drink 1.5 pints between 9am and 10am. I'm wondering if it would be easier to go up there earlier, say drink half a pint before I go then drink the other pint when I get there as there will be plenty of loos if I get into trouble. Only thing then would be i wouldn't fancy sitting around a waiting room for a couple of hours and also it's possible that because of my tension/anxiety I may not be able to empty my bladder after the scan anyway! So don't know what to do for the best really.

Will keep you posted.

19

I used to measure everything and write down what I ate and drank. Its a no win situation.    It meant I was thinking about it every minute of the day which could have made it worse, but on the other hand it helped to show me what foods/drinks could be doing to my body.   I kept this up until I felt better and then I stopped taking notes.     It was very time consuming.

When I went to hospital I drank tons and tons over 2 and a half litres and I still didn't need to go.   Probably stress.   Eventually I did need  and had the scan.   When I went to toilet I told myself to calm down, leaned forward and I was able to go.   I waited a minute then emptied more out.   Another 30 seconds the more again until I felt i'd emptied fully.   Then I went   back to get measured.    It was about half an hour later on way home I got severe pains in chest. Fortunately the indigestion tablets cleared it.

The nurse kept coming through to waiting room and asking if anyone was ready.   In our case once you were ready you got taken.

I hope you get on ok.   Please let me know how you get on.

20

Must admit that since Saturday I've been taking notes of my fluid In take and output and the times I drank and peed. Did it because I hardly seemed to pee all day Friday, or through the early hours either. So was worried about it. If nothing else my notes are showing me that I'm peeing more than i thought I was. Yesterday was a bit slow with 350ml at 8am then only trickles at 12 noon and1pm and 100 ml at 4pm, 150ml at 6pm, 300ml at 9pm and 100ml at 10pm before I went to bed. Looking at it, probably my peeing starting off so slow yesterday because I didn't have much fluid intake. 250ml at 8.30am , 150ml at 11.15am, and 250ml juice at 2pm. No more to drink till 4pm.

2.5 Litres is an awful lot of liquid to hold inside you. I have managed just over a litres before today and I thought even that was a lot. What did they say when they scanned you. Your bladder must have been really stretched. I've been told to drink 1.5. Pints before the scan. Think I will drive up there early and drink it whilst I'm waiting as there will be loos around if need be. Think I will need to have it all down me at least an hour before the scan though. Glad you were able to go to the loo afterwards anyway. Glad you got rid of the chest pains too with the tablets.

Will be glad when I'm on my way home from the hospital tomorrow with an empty bladder, thats if I can empty it of course. Don't know what will happen if I can't. I know it will empty later in the day though. But that's no good if they are waiting to scan me is it.

Anyway I will get back to you tomorrow when I get back home.