Bladder Problems.

[BladderWoes]

For the past few years (well, since school really) now I've had bladder issues, just going very often 'just in case' I need to go and so forth. Recently it's become a diasater. I haven't been able to get on a bus for a good 18 months now because I have panic attacks when I get on them, I can't get onto the train if there is no toilet and coaches are a big no. I told a doctor about it in 2009 when it was just starting to get bad and she completely dismissed it and told me that I had to train my bladder to hold more and was quite rude to me about it as well. When I brought it up last year to another doctor we never had time to do anything about it as I was leaving.

Since then it's gotten worse and worse, to the point where I can't even leave the house anymore because I start panicking. I have just managed to sort a car out and am supposed to be driving to a town 30 mins away tomorrow and I'm panicking already. I'm trying to get back into my preferred job role as well but it would mean going 3 hours minimum without the loo and it is really stressing me out. Even sex is an issue because I cannot relax in case I need to stop to go to the toilet. I spend my days scouting out where there are toilets so that I'm reassured that they are nearby if and when I need them. I'm only 21 and have no kids, no weight issues or anything like that.

I'm planning on going to a doctor tomorrow as it's gotten out of control now, but I am wondering what the point will be as I'm constantly moving about and can't really settle anywhere with enough time for treatment of any kind. I also looked into seeing a hypnotist but couldn't find one.

I want this to go away so that I can have a life. It's completely controlling everything at the moment, the thought of being anywhere without a toilet brings on panicky feelings, if I get to the point where I can't find a loo I start hyperventilating. I haven't wet myself or anything yet, but I'm terrfied that it'll happen eventually and I wear sanitary towels just in case. What am I supposed to do?

this site is very good

Oh, you poor thing. I can sympathise because I've recently started suffering from recurrent utis and have begun to feel like this regarding visiting loos a lot.

The above link will take you to a website with lots of info and a discussion forum.

Don't let your gp fob you off. There are treatments out there, but you'll need a proper assessment.

Antidepressants can help with the panic attacks.

Thanks for the site, I'm trying to see my GP but they're full for the morning. I thought that once I had a car I'd feel more reassured but I'm even more terrified than before.

I've just started on Uva Ursi at lunchtime today and barely got to work in my car without wetting myself

However, after taking two doses of Uva Ursi, I haven't need the toilet for three hours now and the stinging has completely gone.

This might be worth trying perhaps.

Doombar: Are RADAR keys nationwide or just for seperate counties? I'll look into it definately, it may help some.

ilovemyhens: What does Uva Ursi do? Off to google

I never managed to get to the docs today, by the time I finally got through to them they'd run out of appointments again! I'm driving to this town 30mins away tomorrow (skipped it today for somewhere more local) and am a bit worried, never driven on the roads going up there before so nervous about that which will make my bladder worse too I may give up and get the train.

Did you have a look at the COB site?
You could start by beginnning the "IC/OAB" diet. That means cutting out lots of things like coffee, tea, fizzy drinks, alcohol, fruit juices etc.

You should also cut out spicy foods and anything acidic such as oranges, lemons, kiwis etc etc.

I have had this problem for years and years- it is horrible and I control it with diet and anti histamines.

Your dr amy not know much but they should know about offering you amitriptyline - so do ask.

I completely understand where you are coming from, I could have written exactly the same story a few months ago, I am 29, have no children and no other health issues. I was constantly in the toilet or on the lookout for one, I couldn't go too far without panicing and actually got to the point of wetting myself. But I built up the courage to speak to my GP and he was actually very understanding. He put me onto medication called VESIcare, for an overactive bladder. I have now been taking this for two months and have seen a vast improvement. Also in the surgery there were leaflets on bladder weakness that I picked up and read, which also made me feel a bit better about the situation (knowing there were other people going through the same thing and that there were various options to help). I hope this helps, good luck!

I really feel for you!

You may find that they get to do a test called eurodynamics - it really isn't as bad as you think once you get there - the leaflet frightened the life out of me! The ladies were fantastic and gave me my privacy. I had to go with a full bladder (almost wet myself when I got there!), then sit on a comode that monitored the flow of my urine (they stepped out obviously). Then, they put a catheter in and filled up my bladder, asking questions about what it felt like, getting me to cough etc. I then got up and stood on a mat thing and relax, to the point of literally wetting myself! Reading this back now, it sounds awful but it really was well worth it. The ladies are used to have old biddies in there so found me to be a breath of fresh air and were really respectful.

I was also diagnosed with an overactive bladder and given vesicare which has greatly improved things, although not completely cured it.

I really hope I've managed to be reassuring, that was my intention anyway! Hope the drive goes ok and that you get to see a doctor soon

Thanks for the advice still! I spoke to my doc and she put me on a tablet and is referring me for tests apparently, no idea when I'll get asked to come in for them though. I've been driving around a lot the past few days and feel so much better about travelling around now that I'm in control of my vehicle so can stop whenever I like! That's helped the panic attacks somewhat, bit sketchy about the motorways though because of being unable to stop, but I'm hoping these tablets can help me, even if it is just temporarily.

OP - I could have written your story

Have suffered from this for years.

My doctor put me on Vesicare before Xmas and there is some improvement and I have been referred to the Urology dept and hospital to have my bladder scanned.

I thought this was just something peculiar to me and I put up with it. Really glad there are treatments out there and we can stop it ruling our lives

Good luck

For all of you who are sufering with this I have great sympathy. I am a bloke but this virtually ruined my life and frankly doctors were either dismissive ('its just stress') or were just stabbing around in the dark.

I think I had just about evey test, operation, drug and treatment they had. Then I got referred to someone who was doing research into interstitial cystitis. It was a revalation.

I was told enough to find a 'cure' by myself. I went on a coeliac diet and removed all gluten and milk from my diet. The IC/OAB diet trigger foods also I knew increased my symptoms as does drinking alcohol so I careful with those too.

For years I told doctors I always knew it was related to foods as my symptoms disappeared completely if I fasted for 24 hours.

It turns out that coeliac and interstitial cystitis are both autoimmune conditions where your own immune system is stimulated to attack your body tissue.

I strongly advise you look carefully at removing all trigger foods or even fasting 24 hours and drinking just water to see if you feel better. It may not be he cause but it is worth a try.

I do also carry a RADAR key and ocassionally wear incontinence pads but have a very happy normal life.

My sympathies as I know exactly how you are all feeling!

I echo the Interstitial Cystitis advice, who would have know that one day eating a handful of almonds could render you bursting for the loo 24/7 and give you a bladder that you feel like is on fire? It can make you feel like you are losing your mind, as it's always on the forefront of taking over your life. From experience some urologists don't understand :(

I wanted to add something that I found out about myself and that is that I used to get a kind of 'fluttering' feeling lower down in my pelvic floor area. I found out that by constantly anwering the call to urinate or straining to urinate can overactivate the pelvic floor muscles and that as a consequence they can become over-tense. I believe it is referred to on the interstitial cystitis network website on their forum as 'pelvic floor dysfunction'. I found this out after seeing a pelvic floor physio who advised I had to keep doing the pelvic floor exercises, but as a result of this I found I couldn't urinate. I had to learn to relax instead of doing the exercises. It seems to be better understood in america.

I hope you find some relief, don't give up.

Coming late to this thread, but in case you're still checking in, OP ...

I was diagnosed with intersitial cytitis back in October (having never had any bladder problems before - though I had IBS for years). Hoping I can therefore offer the benefit of my experience! I too found I was ALWAYS needing to pee, plus, having sort of floating generalised pelvic pain, really quite bad urethral pain, even some vaginal pain (horrendous, basically, and SO upsetting).

I found that doctors pretty much weren't able to help at all, so looked into it all myself, and am now on a super-strict diet (meat, veg, nuts, eggs) as the woman I spoke to about it (Deborah Grant at the Hale Clinic in London) sent me for lots of tests to look for underlying causes, and it turned out I had a massive yeast overgrowth (have a google - I'd been a chronic antibiotic user and had been on the pill for about 17 years). So... I'm now on this crazy diet to starve out the yeast, as well as natural antibiotics to kill it off and probiotics to repopulate the good bacteria in my gut (of which there was none). I have good days and bad days now, but the overall trend is definitely better. I no longer have to get up four times a night (once or maybe not at all) and my frequency in the daytime is back down to 5/6 times a day (and I'm drinking water for England, so this is pretty good ). Still have a sort of background sense of needing the loo/that something's not quite right, and have days where everything's sore and I feel miserable, but I do think I'm slowly getting better.

Really hope this helps, it's AWFUL I know. And doctors seem to know little to nothing about it!

oh and @indigobarbie - I think I have pelvic floor dysfunction (realise I ALWAYS have my pelvic floor muscles clenched) and am trying to find a UK physio who can work with me on it!

OP you sound very similar to my dd, except that she has explosive behaviour rather than panic attacks. Dd has an overactive bladder. She is 8. For the past 2y she has been on a medication called Ditropan or Oxybutinin, which has transformed our lives.

2y ago dd rarely knew when or whether she needed to wee. She would wet herself several times a day, wets ranging from tiny drips to a full bladder's-worth. She was still in nappies at night (which I know is normal). On the medication she is almost as reliable as any other child. She is also dry at night. Possibly she would be completely reliable on a higher dose, but we feel that the slightly low dose plus a bit more active management (ie reminders!) is a good compromise.

BladderWoes - there is another thread about interstitial cystitis going on now on MN - OVER HERE.

You might find it helpful to have a read.

Hi, sorry I've lost track of this thread, I am on the other one which BeenBeta has linked to.
LoveandSqualor I believe the therapists who can help are called those trained in myofascial work.
I found this link a while ago and even told my Dr about it, he had never heard (not surprised tbh) about tightness in the pelvic floor. I have found that keeping my tummy 'soft' and not consciously holding the muscles in, seems to help. When I do a lot of tummy or pelvic kegels, I get the urgency thing again....

pelvic floor dysfunction

HTH

I suffered with overactive bladder straight after DD was born, and received exactly the same response from my GP-he just wouldn't take it seriously. I was eventually treated with Regurin, which worked a treat. I didn't take it all the time, just when I needed to (long journeys etc). Last year, the problem cleared up for no reason. Have you tried the new helpline that's being advertised on the telly?

I'm BladderWoes, back again.

I ended up being referred for tests but left for a job on the other side of the country so never had a chance to do them. I saw a hypno four times whilst there and she was brilliant with tackling the panic attacks (I can control those a little better now) however I've just had to move back home so need to find a hypno down here to continue the treatment. I'm also going to head back to the docs again as it's definately worse than ever before now, to the point where I can't even go shopping anymore and couldn't even cope with the twenty minute walk to work. I'm hoping that once I've found a new job that the routines will help me regain control somewhat (looking for nanny work, lots of routine there!) and I'm going to have a long chat with my doctor about getting the right treatment as well as possibly being referred to a psychiatrist, as I'm very certain that most of this problem is psychological due to being mostly fine and in control when I know I am around a toilet.

Thank you for all of your advice before, I am hoping to get this sorted so that I don't have to worry about my sister' wedding in October and standing at the front for half an hour as a bridesmaid!