Hi, GreyWolf.

I understand exactly how you feel as I have been suffering with this same problem since the end of August and it's not getting any better.

At first when I went to my doctor he said I'd got an UTI and gave me antibiotics, cleared up within 3 days and my symptoms never improved so I have now been told by my urogynaecologist that the infection has got nothing to do with this problem I've got. It just put the doctor off the scent of the 'real' problem.

My output is more than my input. I only drink about 4-5 cups a day to try and not go as often but I still end up going much more than I should and am passing way too much than what I am drinking. I am disturbed at night too as I have to get up about 4-5 times to go to the toilet and it's really getting me down now. I, like you do have that 'urge'/full bladder feeling like I need to go which is certainly irritating. I too don't have a problem with leaking/incontinence.

Unfortunately I don't know what it is as my doctors and urogynaecologist doesn't know either until they've done some urodynamics tests which I've got a long wait for - about a couple of months or so....

I have, at times considered only drinking about 2-3 cups a day but have been told I could get really ill by doing this but I feel it is the only solution but don't want to do it as I'll end up in hospital. I am so frustrated and don't know what to do anymore.

I've tried a tablet and the full dose of Vesicare but have found no relief. I am going to ask my GP about anti-diuretics as these may temporarily be the only way forward at this stage.

I have thought that passing more than what is going in wouldn't be a symptom of overactive bladder but I'm not entirely sure. I have though about the fact it may be more related to the actual kidneys more than just the bladder but I am also not sure on this either. My doctor hasn't really been all that helpful so I've been guessing a lot of it as they are totally knowledgeless on bladders and certain medical conditions.

Sorry I can't be of more help, I just wanted to post as I know exactly how you are feeling, unlike most doctors.

Hope you find something that works and good luck.

DS

Hiya! I just replied to your post on another discussion basically saying the same thing!
Yes I tried drinking very little and it just made it worse. I kept getting headaches and I blacked out a couple of times (although that's probably related to the fact I'm iron deficient). Also it makes the urine more concentrated so it can cause irritation.

Basically I never pee "normally". I feel the need to go all the time, even when I don't actually need to go, although like I say if I drink more than a couple of glasses of water on a night out and my bladder goes haywire. This will carry on until I must have gotten whatever I drank completely out of my system and then I revert back to just the feeling that I need to go when I don't. And so on round and round and round.
So I either pee huge amounts or hardly anything and the feeling of needing to go never stops whether I need to or not.

I had cystitis about four or five years ago which I think might have triggered it, and I sometimes find that it gets unbearable about two to five days before my period, it's so reliable that if know I'm due one I can quite often tell when I'm about to start because my bladder will go mad. So it could possibly be hormone related even, or maybe a combination of things.

Yes I tried Oxybutinin which made it worse (my bladder will feel full but I couldn't empty it properly), I've actually been put back on it again, but I've stopped taking it because same problem. I also have tried Vesicare and Regurin, as well as a muscle relaxant and later something which was designed to regulate the nerve impulse that gives the feeling you need to go. So far nothing has worked. I also tried bladder retraining but found it difficult purely because I never know when I actually need to go.

I too was wondering if it is possibly kidney related. I mean overactive bladder diagnosis fits the times when I only have the feeling, but then it doesn't explain the times when I need to pee a lot.
I'm getting desperate about this now. To say this is distressing and is getting in the way of my life is a massive understatement, it drives me to despair at times because no-one has a clue what it is, what has caused it or how to deal with it.

Hi, GreyWolf.

I totally understand the feelings of having bladder problems as bladders generally seem to be temperamental things as some people can't even drink alcohol or anything with stimulants in like coffee, tea or chocolate. I'm trying to avoid all of these foods but am finding it just so hard to do as I love a nice cup of tea in the morning and chocolate when I'm watching a movie with my family.

I too have those 'urges'/full bladder feeling of needing to go pretty much constantly. It's most awful at night because it's just so uncomfortable.

I also, like you, have noticed that the bladder symptoms get much worse right before and right after a period so I agree, I also think it's hormone related even but when I asked my doctor he just said "no there isn't anything wrong with your hormones as your periods are regular" without even doing any tests so alot of the time I don't think doctors know what they are doing or even know some of the stuff us patients know. I have heard and read that endometriosis or edenomyosis can cause excessive frequency and the 'urge'/full bladder/pressure feelings if it is pressing on the bladder and inflaming it. This could also be a possibility and I'm going to ask my doctor to arrange me to have a scan to check for any of these or other things like poylps. Though I have read that only Laparascopy can fully and accurately diagnose endometriosis and/or edenomyosis.

On the part about the kidneys. I still wonder this too. I have had blood tests to check my kidney function and they came back ok. I wonder if I should be asking for more kidney tests as it doesn't sound like overactive bladder to me. Where is all of our output actually coming from if we are only drinking smaller amounts?

I did actually ask my doctor about this and he just brushed this question off too and said "you are obviously drinking a lot for that much to come out as it can't come from out of nowhere." but when I insisted that I wasn't drinking lots he just shrugged and said "I recommend you do a bladder input and output chart and we'll wait a month and see what happens." I asked him if he'd refer me to a urogynaecologist but he said "We'll wait a month and see what happens as it's probably just in your head that you keep feeling you need to go all the time." That was when I gave him a bit of a talking to and told him not to tell me "it's in my head" as he tried to tell me this before when I had my spine problem which unfortunately I've also still got.

Basically he was totally not bothered and unsympathetic ad just wanted me out of his office, I could tell by the way he spoke to me. I never did go back to him as I decided he was not helping me so he wasn't good enough. I went to another doctor in his practice and asked to see a urogynaecologist and this doctor was much more abliging to do it and did it.

Hiya!

Yes I agree with you, bladder problems do seem to be misunderstood and people tend to underestimate the impact they can have.
I too try and avoid stimulants, I rarely drink tea or coffee, so those aren't really a problem, but chocolate is my vice. I'm going to try giving it up (although I bet that won't last long!) to see if that makes any difference.
When you say "urges" do you mean the feeling of needing to go when you actually don't? I completely agree with you, it is VERY uncomfortable, and I think it is really bad at night because when you are trying to sleep, there is nothing to distract you from it so it just plays your mind constantly. Most of the time I can ignore it until I go to sleep but occasionally I do have to get up at night to use the toilet.

The fact that you too have found it sometimes gets worse before periods is interesting, I'm also wondering if it is a puberty thing. How old are you, if you don't mind me asking? I'm nearly 20, so I've just finished puberty. This first cropped up about five years ago which would have put me right in the middle of puberty, I'm hoping now that it might sort itself out, or at least become easier to deal with. I asked my doctor if it was worth trying the contraceptive pill, as it contains hormones, I was wondering if that might work. However my doctor said that while it might work, she would advise me against it because I have a history.

Endometriosis? Really? I had no idea about that. I've never heard of Edenmyosis though so have no idea what that is sorry.

I know, it doesn't make sense does it?! I can't understand where it all comes from.

I hate it when people say "it's all in your head". It doesn't sound to me like it's in your imagination, though I suppose its easy for them to say that because they may not be living with that 24/7!
It could be a nervous thing hun, it may be that your brain keeps telling you that you need to go, so you therefore get the feeling that you do. I agree though it is very distressing and annoying.
Try and speak to someone else who will be a little more sympathetic and understanding!

I too have to go and speak to a uro / gynae at some point.

Good for you hun, and well done! Too right, you need to speak to someone who will take you seriously and give you the help you deserve.
The problem I think is that doctors have to distance themselves from their patients, so many tend to treat them as a case and not a person. Not all doctors are like that though, so find someone who isn't! The doctor I saw a while ago was lovely, she was really helpful and understanding.

Hi, GreyWolf.

Yes, I do mean when I have 'urges'/full bladder feeling I don't always need to go. I sometimes only pass a small amount that usually a normal functioning bladder would happily hold for longer. I have this feeling pretty much all the time. I find it particularly at night disturbing due to the constant uncomfortableness and have actually tried to lie flat on my stomache in bed to try and get rid of the pain but it doesn't help either.

On the puberty thing, I am 20 years old currently so I'm guessing I'm pretty much finished on the puberty now. The doctors don't always prescribe contraceptive pill particularly for people who suffer from miegrains or something similar as it could make these problems worse.

I have heard and read that endometriosis can grow on the bladder or even rarely inside it which can give symptoms of frequency and the feeling of needing to go all the time.

I understand what you mean when you say it could be a nervous thing as I think I've heard that children get it too when they reach certain stressful milestones like starting a new school, etc. That does make sense that it could be nervous bladder.

I'm pleased to hear that you are going to see a urogynaecologist/urologist as they should be able to give you a more detailed explanation of what it could be and also order some tests.

I'm lucky in that I've got about four different doctors in our practice so I can pick and choose who to see.

I've just gone to the doctor who referred me to the urogynaecologist today and he was more sympathetic but unfortunately couldn't give me anything to take the 'urge' sensations and frequency away as I'm due to have my urodynamics and medication may effect the test results.

I've also got to have a blood test this Friday morning for arthritis and rheumatoid arthritis as I do have a family history of it - my mom's nan had it.

Thanks once again for your help and understanding. I really appreciate it a lot. Hope you get the answers you need when you go and see the urogynaecologist/urologist as it can be the first step into finding out what is going on.

I look forward to hearing from you again.

Ah I was just wondering because mine started when my periods became regular when I was 14 and I was in the middle of puberty so I was wondering if it was possibly my hormones going haywire, but if that was the case I would have thought it would have sorted itself by now!

Hmm that's what I was told. Apparently it could cause them to start again or possibly even put me at risk of a stroke, so I don't want to risk it!
I had no idea that endometriosis could cause these sorts of problems, I just thought it was a uterus problem and that was it. I don't think I have it however because I'm not it any pain, just a lot of discomfort and a bit of a distressing situation.
Thanks for the weblink, I'll check that out.

My doctor will put me on the waiting list hopefully when I go back to see her, she said to let her know straight away if the oxybutinin makes it worse so I'll book an appointment sometime over next couple of days.
Good luck for the blood test!
No problem hun, it's good to talk to someone else who knows exactly what I mean!
And to you, good luck, and hope that we can both get this sorted!

Hi, GreyWolf.

The hormones part I'm not entirely sure about but maybe it'd be best speak to the doctor about it as it could be related but then again may not be. It does sounds odd how it's come with that, sort of thing. When you see a urologist they will probably be best to ask about that sort of thing.

No, it's best not to risk it. Again, it's best talk to either a urologist or urogynaecologist, preferably a urogynaecologist as they tend to specialise in both things about the endometriosis and also the uterus being maybe a possibility.

Thanks for the good luck on the blood test. I'm certainly one who isn't keen on needles and am not looking forward to it but it's the only way they can test for certain things so I've got to have it! The worst part about blood tests is afterwards as they throb for about a day on me and are tender too for a few days after that. Ouch!

Good luck with your urology consultation and tests and I'll let you know how mine go. I really do hope we can both get better, including lots of other people too on these boards as I know there are quite a few here with similar problems.