Latest results. feeling really upset

After waiting 2 months to see my urologist and go over the results of my urodynamics test I finally did so today and the results are basically what I was scared of in that they showed nothing.

He said that no abnormalities showed other than a small capacity, there was no sign of OAB no instability nothing at all.

Im still having anywhere between 2 and 7 accidents a day getting up to urinate twice a night sometimes, going to the bathroom over a dozen times in a day often and many days I find myself getting strong pain throughout my pelvic area and struggling not to pee myself despite having gone less than an hour ago.

every time Ive had a test done its showed little to nothing and its absolutely ruining me. Im getting so many symptoms and nothing shows.

I have anxiety and aspergers so they've said maybe my anxiety is just causing a little bit of trouble with my bladder but anxiety isnt really able to explain the pain or the severity of the incontinence Ive had a lot of accidents along with a lot of frequency and pain on days where everything was fine mentally

my urologist has prescribed me betmiga which is meant to work better than the last medication I tried Im also seeing my doctor again on the 20th and my urologist in 5 weeks to see how the meds work

Ive had the incontinence for over 2 years and nothing is showing and things just seem to be getting worse in regards to it.

the only way that Ive been able to leave my house has been by using continence aids however previously my urologist had a diagnosis of unstable bladder which has now been ruled out Ive been in tears since I got home because Im really really scared that with no cause Im going to lose the funding Im getting and not be able to get the products I need anymore

My urologist has said urodynamics was the last test he could do so my only options are to try the meds and maybe see a pelvic floor physiotherapist if they dont work

I just dont know what to do at the moment I was really hoping the results would show something and now Im just upset and scared

this whole situation is just a mess

Note said:

See, it's situations like this that make me wonder why some in this community want to force incontinence. ABDL or not, we need more stories like this to help keep a balanced frame of mind.

Sorry to hear you are going through so much turmoil with your IC, have you seeked second opinions on the matter?

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I saw a continence advisor at one point who said I was doing everything right in regards to dealing with the incontinence however seeing another urologist wouldnt really do anything my current one is a professor of urology and the tests arent really showing anything so If I saw another urologist itd probably be someone who isnt as experienced whod then do the same tests and get the same results

early next week Im going to briefly speak with the continence advisor I saw to see what the situation is regarding funding but Im still a bit of a wreck today

Note said:

Your urologist might be on to something. If he cannot find anything wrong with you medically (although that doesn't explain the pelvic pains), maybe your IC is brought on by anxiety. If your IC is indeed stress induced maybe it's worth seeing a counsellor or even a hypnotist as an alternative.

I know of another from this community that became IC after his father died, has his good days and his bad but is an ongoing problem nonetheless.

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in the next month Im seeing a counsellor but there was no catalyst for this I just started getting frequency and strong urges that got worse and worse so now Im at my current point
its a constant with me I dont have days without it its every single day and even if it were mental its still ruining my life at the moment and if I lose my funding I dont know what to do then ill just be totally screwed I cant leave my house without continence aids

Has the urologist said that without a cause the funding for the supplies will be removed? Do you know this is a valid concern? I feel that getting upset over this without knowing for certain may not be healthy.

For me, anxiety was a huge part of how my bladder functioned. While in a hospital, I was constantly thirsty and drinking a liter per hour. Had to go every 30-40 minutes. At one point, a doctor saw possible evidence of dehydration and ordered the staff to monitor my intake and output. The first first nurse to see the order politely suggested the doctor just wanted confirmation. The rest of the staff thought it was hilarious. The output chart was largely ignored. The intake chart quickly revealed dehydration was not an issue. Over-hydration and electrolyte balance was briefly mentioned, but also quickly dismissed.

With my anxiety better managed, so is my bladder. I completely stopped needing diapers at night. My sweating, thirst, and bladder needs have gone way down since then.


The urologist finishing their part does not conclude the search or stop your treatment. You currently have a need and that need remains even if the explanation has not yet been found. At your next appointment, you can ask about other possible doctors who may be able to help. After all, I was not even being treated for bladder issues and received help there.

Im going to talk to the continence advisor on tuesday to find out about my funding

its just a hard blow for me I was really expecting results and now theres nothing again being stuck like this is already bad but if I was diagnosed with something at least there would be a reason now I just have all of these problems and noone knows why
I have all the symptoms of oab yet all the tests show nothing Im controlling my fluid intake and diet and doing pelvic floor exercises daily but nothing makes a change
it could be mental but that doesnt explain the pain or why im waking up to pee despite limiting fluids several hours before bed and going before I fall asleep

Hey mate, dont worry about funding- "dysfunctional voiding" still fits your symptoms.

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pain could be psychosomatic -
as for the peeing at night, have you had you ADH checked?

Bear85 said:

Hey mate, dont worry about funding- "dysfunctional voiding" still fits your symptoms.

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pain could be psychosomatic -
as for the peeing at night, have you had you ADH checked?

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im not sure about the pain I get it often but not every night but its often located in my lower torso in the bladder area and genitals but I get one or 2 different types of pain
Ive had a lot of blood and urine tests done by my urologist and doctor but im not sure about adh
thanks for posting today has just been a real mess for me
is urodynamics generally reliable or is it likely that there was nothing to find?

I assume this isn't the cause of the problem, but I thought I'd mention it just in case (and for anyone else googling and seeing this thread). But if you've used ketamine in recreational doses, it can cause scarring of the bladder, causing pain/discomfort, urgency and incontinence.

tiny said:

I assume this isn't the cause of the problem, but I thought I'd mention it just in case (and for anyone else googling and seeing this thread). But if you've used ketamine in recreational doses, it can cause scarring of the bladder, causing pain/discomfort, urgency and incontinence.

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never taken any drugs
even drinking screws me up, if I try to drink my bladder gets painful and uncomfortable and the incontinence worsens a bit

so today I confirmed that Im not going to lose my funding which is very good
I was terrified at the idea of losing it and so knowing that I wont is a massive relief to me
Im seeing my regular doctor again on the 20th so Ill probably ask a bunch of questions
and this weekend Im going out to a party for a family member which is a huge social thing
so Im doing what I can for the time being
If anyone has anything to add please do and feel free to ask anything

Awesome about confirming the funding. Enjoy the party!

I would try another doctor. People do make mistakes even doctors.

tiny said:

I assume this isn't the cause of the problem, but I thought I'd mention it just in case (and for anyone else googling and seeing this thread). But if you've used ketamine in recreational doses, it can cause scarring of the bladder, causing pain/discomfort, urgency and incontinence.

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Wait those are possible side effects right? I don't know personally but you did look at the facts of this drug correct? (I'm not 100% sure but I actually am starting to believe you about that) Why on gods green earth would a doctor want to prescribe you that if your symptoms happen to be the same as the possible side effects? If Ketamine really does in fact cause urgency then by it's very nature the drug would actually aggravate his problems not help them. Look that's like prescribing laxatives to help someone with their bowel incontinence for example. I hate to say this Saix but I highly recommend that you go see another Urologist because the one you're seeing sounds highly questionable at this point. I'm no doctor or anything like that but I do have more knowledge then a average person regarding these things though I'm not exactly what one would call a skilled professional(I have parents in the medical field and I did take some college level classes that helped me understand the human anatomy better then what is average).

accepted said:

Wait those are possible side effects right? I don't know personally but you did look at the facts of this drug correct? (I'm not 100% sure but I actually am starting to believe you about that) Why on gods green earth would a doctor want to prescribe you that if your symptoms happen to be the same as the possible side effects? If Ketamine really does in fact cause urgency then by it's very nature the drug would actually aggravate his problems not help them. Look that's like prescribing laxatives to help someone with their bowel incontinence for example. I hate to say this Saix but I highly recommend that you go see another Urologist because the one you're seeing sounds highly questionable at this point. I'm no doctor or anything like that but I do have more knowledge then a average person regarding these things though I'm not exactly what one would call a skilled professional(I have parents in the medical field and I did take some college level classes that helped me understand the human anatomy better then what is average).

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my urologist prescribed me Betmiga which is a drug used to treat OAB and other bladder conditions
that poster was if id taken ketamine which is a hallucinogenic drug
slight mix up

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Merp said:

You're lucky to get the funding for diapers. I'm incontinent and I'm in a similar boat. All my MRIs came back normal with the exception of a crushed disk. I couldn't do the uro dynamics because of the pain. I go back to the neurologist tomorrow to see what happens next. My health care doesn't supply diapers. ��

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In australia its an annual payment of a little over 500 dollars so its not like Im getting free unlimited supplies
that little bit helps a lot though
I understand the pain involved with urodynamics getting the cath in felt like I was being stabbed and when they had me urinate around it I was in intense pain at one point and thought Id knocked it loose
the procedure was torture didnt help that the nurse doing most of the work didnt seem to give a damn

saix said:

my urologist prescribed me Betmiga which is a drug used to treat OAB and other bladder conditions
that poster was if id taken ketamine which is a hallucinogenic drug
slight mix up

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The biggest problem with communication is the perception that is has occurred. Well no harm done at least. In that case I would highly suggest taking the medication but watch for the side effects as well. Just look up the side effects both on the bottle or container for the medication as well as online as well and then decide if it's worth it based upon your own personal experience since no 2 people react to the same drug in the exact same way.

Have you had a mri or lumber puncture / spinal tap ,you have got the same symptoms I had at the start urinating over a dozen times in a day which went on for over 2 years
strong pain In pelvic area it could be nerve damage , is the pelvic pain constant or does it come and go, if its been going on for over 2 years I was the same then I had the lumber puncture to rule out ms ect I have a hereditary condition called hereditary spastic paraplegia which causes numbness and incontinence its very rare basically I have larger nerves which damage the doc told me it can start in middle age or be born with it I get numbness 24/7 and urine incontinence now after 3 years it affects my balance there is no cure only meds to help if you have any signs I would get a second opinion from another doctor I have had it over 4 years and had to pressure them to get tests done ect try and not get to down you will get an answer whats going on

dad3601 said:

Have you had a mri or lumber puncture / spinal tap ,you have got the same symptoms I had at the start urinating over a dozen times in a day which went on for over 2 years
strong pain In pelvic area it could be nerve damage , is the pelvic pain constant or does it come and go, if its been going on for over 2 years I was the same then I had the lumber puncture to rule out ms ect I have a hereditary condition called hereditary spastic paraplegia which causes numbness and incontinence its very rare basically I have larger nerves which damage the doc told me it can start in middle age or be born with it I get numbness 24/7 and urine incontinence now after 3 years it affects my balance there is no cure only meds to help if you have any signs I would get a second opinion from another doctor I have had it over 4 years and had to pressure them to get tests done ect try and not get to down you will get an answer whats going on

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I havent had either
my doctor and urologist have done a lot of blood and urine work along with all of my previous tests
I am suspecting interstitial cystitis for the pain, Ive been doing some reading on it and a lot of what Ive heard matches up perfectly with what I experience so interstitial cystitis could very well be a cause for the pain at least
still not sure about incontinence though
the pain comes and goes it also varies in area and severity I have one or two known triggers for it one being alcohol once again seems to match up perfectly with interstitial cystitis so im leaning towards that
tomorrow I see my doctor so I will mention it to him