Urodynamic Testing

[Orchid_lover]

Has anyone had a bad experience with Urodynamic testing? Had the test done through the NHS this week and felt afterwards that neither had it been carried out properly by Urologist nor that I had been properly briefed about the test, which I believe then affected the result I was given at the end of the test. I am considering getting a second opinion and seeing another Urologist privately. Has anyone else done this and requested another Urodynamic test be carried out to see if the results were the same or not and what was their outcome? Would really appreciate hearing anyone's experience of urodynamic testing, be it bad or good.

[redeyes2]

Hello, hope you are feeling better by now. I also had a bad experience with Uro Dynamic testing. Like you, I was not told what to expect As the nurse started the test, all of a sudden I was in excrutiating painthat went from the ureters to mid stomach and the machine registered it. She stopped, spoke with the dr and sent me for an ultrasound (US).

The US showed nothing going on in the ureters except that they were juvenile size and in the kidneys a little hydronephrosis. That didn't explain the pain, from Uro dynamic test. The pain was the worst pain ever, much more painful than having a baby, I was literally crying as they moved me from dr to scan and then scan and set me in a waiting room in a wheel chair in excrutiating pain. The pain never went away until they injected me with something just before I left for the day. They decided I was having a gallbladder attack and surgically removed it the next day.

Now, that same dr wants to do a u scope, swl, expander and leave a catheter in. He claims I have a kidney stone. One of my other docs sent me for a CT scan of that area in May and it specifically says no evidence of a kidney stone. I asked if they had any info on it and the dr said he had it done himself and it didn't hurt. But I may not be able to control urine stream while the expander is in. (not cool, I am a full time student!) Naturally, I have researched this...and my answer is No way! I have totally cancelled all appts with this dr. office and asked my gp to refer me to someone else. To anyone that has been through any of this, does this sound like an unusual practice? or ... I hate to think it - could this be standard practice for urology?

@latimersarah... what has their follow up on this been and what have you decided to do ?

I hope you are not in pain.

Red

[Orchid_lover in reply to redeyes2]

Hello & thank you for replying to my post, really appreciate it.

Your experience sounds terrible & I hope you manage to find a much better doctor.

I’ll try & summarise mine as best I can:

I asked my Urologist, before the test, what it would involve, but he just said he’d tell me as we went along. When he started filling my bladder with ice cold fluid he asked me to describe the sensation and said “was it like feeling the need to go but wanting to finish watching a programme on TV before the commercial break”. I said yes, but that I would probably cross my legs. He didn’t tell me how much fluid he had put in, but I think the cold sensation combined with the pain from the catheter confused me & suddenly I thought I felt a lot of fluid go in & it caused me to feel pressure & the need to go. At that point he stopped test & left room & I peed into commode & nurse yanked out the tubes in me & I was told to get dressed. He quickly showed me results (but wouldn’t let me have a copy). I asked him directly how much fluid he’d filled my bladder with & surprisingly it was only 150mls before he stopped. Due to there being no pressure readings after that amount, he deduced that I had only sensory urgency (as opposed to motor urgency) & therefore diagnosed the neurological form of painful bladder syndrome, saying I am part of a group of women who have the symptoms but no signs! Therefore he said treatment options are very limited ie I could ask GP to try Gabapentin & request referral to pain management clinic but places are very limited to bad cases only! On my limited detailed info sheet it only says “when your bladder is full the fluid is stopped” & clearly my bladder wasn’t full. In my Cytoscopy previously, he’d admitted he had only been able to fill my bladder with 500mls (average human under sedation can hold 1 litre or more). On my flow chart which i had done 3 days before Urodynamic test, I felt the urge to urinate after my bladder had filled to various amounts 150,200,250,300, up to 450 (I go on average 14 times a day!). Therefore had I had the purpose of the test properly explained, I know I could have held more & then perhaps the test would have actually recorded pressure readings & could have given a different result! I’ve made enquiry to a different hospital to meet a female Urologist privately, as I just don’t feel my current NHS Urologist treated me right. I’ve had chronic stabbing pain on my right side for 15 months now, stemming from a lump above my bikini line & in November I had focal adenomyosis diagnosed, but the Urologist insinuated that I shouldn’t press the lump, which I don’t! It hurts all of its own accord! He also agreed with my Gynaecologist that the adenomyosis cant be the reason for my pain! (I also have a small cyst on left ovary & a small fibroid. Small or the words “focal” in the medical profession seem to mean to them that you shouldn’t be in any pain!! 😖

So sorry for my very long rant, I’m just so frustrated & feel helpless what to do next....😔

[redeyes2 in reply to Orchid_lover]

Yes, I totally understand your frustration. Feel free to rant! That's why we are here to help and to listen. If you get so you don't trust your dr and you have another dr that is more open, I suggest you tell the other dr. They may be able to point you in the right direction.

I trust my Oncologist; she sent me for a thorough CT scan with contrast on Monday and I was somewhat sedated for it. (had a caretaker My results came today, I have kicked it all to the curb, no cancer, no mass on kidneys, no stones, none of it. I don't know what miracle I just received but I am thankful, I did. Hurrah!! Sooo glad to have this behind me!!

Both of our uro drs were inconsiderate. I always resent drs that "tell me" what to do; instead of offering me an intelligent discussion of my options. I love doing medical research and have complete access to a Med. university library. I do not know why, some drs. think they should pull the one up attitude of " I am a superiorly educated all knowing doctor and you are just a little woman that doesn't understand anatomy. " Because in my case they are very wrong! I double check everything they tell me, get copies of all results and I research everything! I have been lied to, one too many times.

The Ct tells me... I won't be needing a urologist or a kidney doctor! Hurrah! I called and cancelled everything there!

Getting my left eye decompression surgery Tuesday July 24th.

I hope you can talk to one of your medical people they can see all these things in kidneys on a CT scan. Best wishes.... Red