AIBU to want to avoid Urodynamics testing?

[BobbiPink]

I know I’m acting like a child, but after reading the description of the procedure, I really, really, really don’t want to have it.

Just for background, in addition to a whole host gynaecological issues (suspected endometriosis), I’ve been getting random pelvic pain, the urge to wee every 15-30 mins and apparently my bladder is not emptying properly.

So the consultant has asked to to do a scan (which is fine with me) and and Urodynamics test which involves a catheter, a balloon up my bum (!!!) and weeing on a special toilet in front of an audience.

My immediate reaction is no thank you. It sounds painful, I’ve never had a catheter or anything up my bum!!! And it’s impossible that I’d even be able to wee with an audience. I can’t even do it if someone is just outside my bathroom door, let alone an audience.

I also wonder if the consultant is overreacting maybe? Is frequent urination and bladder not emptying properly really so serious that it would warrant something so invasive? And if the tests come back clear, I’ll have put myself through the misery and humiliation over nothing.

Feel free to tell me off if I’m being silly. Also, if people can share their experiences of the same procedure with any tips, it’d be much appreciated!

The retention bothers me, and you obviously

Poor you. My daughter has had this. She has spina Bifida and her issues are bladder related. As already said, not emptying your bladder fully can cause kidney scarring which is bad. She also did get UTIs. She self catheterises now and can do it without issue. She does get regular kidney scans to be sure.

She was very little when she had her last tests but they have continually stressed the importance of emptying her bladder fully. I hope it goes well.

I don’t think Catheters are that bad, sure I don’t think that anyone enjoys them but I’ve had several (pregnancy & spinal operations). I’ve never found them painful, but you are aware of them.
Procedures on bits below are always unpleasant but isn’t an hour of discomfort and embarrassment something you could put up with to stop all the discomfort associated with weeing every 15 mins?

@Gotofriggingsleep

I was diagnosed with stress and mild urge incontinence (no real shock there) but also bladder, cervix and bowel prolapses. I had a TVT fitted in Spring 2018 and this has been an absolute life changer. I didn't quite realise how bad the incontinence was truly making me feel until it was no longer an issue.

I will require surgery on my prolapses at some point I have been told but for now I am managing pretty well.

So sorry to hear about your issues, but I’m glad they’re resolved! Was this after childbirth? Given that I don’t have children I couldn’t really have a prolapse.

I’ve just been told I also have to have a two hour MRI and I have claustrophobia. I also have low blood sugar and I’ve got to be nil by mouth for 5 hours prior, drink some horrible medicine and then wait for an hour and then go into the machine for two hours. Honestly, kill me now.

I’m essentially a healthy person walking on my own two feet, why would I need all these procedures!

The catheter is tiny, the tube up your bum, whilst not pleasant is fine once it’s in. It’ll show if you’ve got OAB. If you’re not fully emptying your bladder, it can cause utis by leaving stale urine in your bladder.

@Bubblemonkey

The catheter is tiny, the tube up your bum, whilst not pleasant is fine once it’s in. It’ll show if you’ve got OAB. If you’re not fully emptying your bladder, it can cause utis by leaving stale urine in your bladder.

What’s OAB? I’ve had urge incontinence on and off for years, and the frequency has been an issue for over a year too. Not a single UTI in the l,ast decade. Plus the consultant is private and will do the procedure themselves which means they get to bill insurance for it. So I’m wondering if this is more a case of making money with unnecessary procedures than something actually concerning.

^

OAB = overactive bladder.

Just read OAB is overactive bladder, but apparently that has no cure. I don’t really care to know what I have that doesn’t have a cure 😂😂😂 It also doesn’t seem life threatening or dangerous just annoying.

I’m essentially a healthy person walking on my own two feet, why would I need all these procedures!

You're perfectly within your rights to refuse any tests you don't want to have. You obviously don't believe you need them so say no.

@Meowchickameowmeow

I’m essentially a healthy person walking on my own two feet, why would I need all these procedures!

You're perfectly within your rights to refuse any tests you don't want to have. You obviously don't believe you need them so say no.

I agree, and I haven’t ruled out refusing this test. I suppose I have reservations because the exact need for and benefit of such invasive and inconvenient tests wasn’t explained to me.

OP why don't you speak to the consultant again and say "if I were NHS would you do this". Any pause/hesitation, say, ok what would you do instead? Maybe you'll prefer that answer.

The only time I had a catheter was after having my baby and I had had an epidural so didn't feel it going in, and taking it out was a slight sharp feeling - over in half a second.

I think this sounds (much) worse than it probably is, especially if you've had colposcopy etc.

Yup, childbirth related - suspect mostly caused by the extremely rough manual removal of my placenta. Hypermobility can cause issues too I understand which i have a mild case of.

@looptheloopinahulahoop

OP why don't you speak to the consultant again and say "if I were NHS would you do this". Any pause/hesitation, say, ok what would you do instead? Maybe you'll prefer that answer.

The only time I had a catheter was after having my baby and I had had an epidural so didn't feel it going in, and taking it out was a slight sharp feeling - over in half a second.

I think this sounds (much) worse than it probably is, especially if you've had colposcopy etc.

I asked if I could briefly speak to the consultant but the office said no, it would have to be a consultation. The assistant has agreed to ask the consultant for me if this is definitely necessary and if there might be another way.

I just had a Pap smear which was so painful that I’m still unable to walk properly. And it’s never hurt me before! So I’m thinking if the Pap smear hurt so much with this team, how bad will the Urodynamics hurt 🙈🙈🙈

I hope they’re not reading this, but my anxiety and trust issues are getting the better of me.

@Gotofriggingsleep

Yup, childbirth related - suspect mostly caused by the extremely rough manual removal of my placenta. Hypermobility can cause issues too I understand which i have a mild case of.

I’m so sorry to you went through that 😔🥺 But I don’t have kids, so I’m hoping mine isn’t something serious.

When I have to wee again with the catheters in place will I be left alone? I know I can be alone the first time I do it without the tubes, but the second time is someone going to be there? Because if they are, we’ll be there all day, I cannot wee if anybody is anywhere near me.

I was diagnosed with an overactive bladder. I saw a continence nurse who gave me a sheet to fill in. I had to measure everything everything I drank and how much I peed out and the times I went.
You gradually hold on to lengthen the time between going.
I did end up having a tvt due a bladder prolapse though.
You can also get medication to stop you going so much, I take Vesicare, due to the fact that the tvt made my urge incontinence worse.

Hi - the staff will be lovely and ensure your dignity is preserved - it's often a nurse that attaches you to the tubes before filling begins. It is such a useful test and will really help with a diagnosis and treatment.
You should be able to ask to speak to the staff who do the testing beforehand for reassurance.

There are treatments for overactive bladder, again as I mentioned above I've had these issues for years (also your age and without children) and after neglecting it for a while because it's just something I lived with, I decided to re-engage with treatment. It's changed my life (although I know it won't be a permanent fix and will need repeating yearly) and has made me feel so much better about myself.

@ariana1

Hi - the staff will be lovely and ensure your dignity is preserved - it's often a nurse that attaches you to the tubes before filling begins. It is such a useful test and will really help with a diagnosis and treatment. You should be able to ask to speak to the staff who do the testing beforehand for reassurance.

But will I at any point have to wee while someone is in there? Because I literally cannot.

They don’t look at you when you’re weeing. The consultant will be looking at the monitor to see the flow rate. In my case there was a screen in between. The nurse moved to the next room (behind the screen) when I was told to wee. It really isn’t embarrassing as you think. They also gave me a leaflet to read before having the urodynamics about what exactly will be done.

It is a useful procedure but for me it took a long time coming for them to suggest it. I think with private they get the ball rolling quicker and you’re not having to wait months/years like on the nhs. In my case I have an overactive bladder. It leaks constantly and I also have urge/stress incontinence. I developed this as a teenager. They gave me all the medication but they wouldn’t work. Then I got sent to the incontinence nurse. After many years they did a cystoscopy where they found that the bladder was small but that’s it. After that they did the urodyamics testing. They could see that my bladder would get irritated when it was full a certain amount. Then they did a cystodystension where they stretched the bladder. All of these procedure came after many years. It’s still hasn’t been resolved . My consultant does both private and nhs. He said there’s no point in private because I’d be getting the same care and the procedures are the same. However, for me It takes months to be seen. They don’t care. They’ll tell you to come back after 6 months , then come back again. They don’t take it seriously. At least with private there more likely to do things quicker rather then letting you get worse. I’m surprised your saying it doesn’t affect your life.

@Pepsimirror

They don’t look at you when you’re weeing. The consultant will be looking at the monitor to see the flow rate. In my case there was a screen in between. The nurse moved to the next room (behind the screen) when I was told to wee. It really isn’t embarrassing as you think. They also gave me a leaflet to read before having the urodynamics about what exactly will be done.

It is a useful procedure but for me it took a long time coming for them to suggest it. I think with private they get the ball rolling quicker and you’re not having to wait months/years like on the nhs. In my case I have an overactive bladder. It leaks constantly and I also have urge/stress incontinence. I developed this as a teenager. They gave me all the medication but they wouldn’t work. Then I got sent to the incontinence nurse. After many years they did a cystoscopy where they found that the bladder was small but that’s it. After that they did the urodyamics testing. They could see that my bladder would get irritated when it was full a certain amount. Then they did a cystodystension where they stretched the bladder. All of these procedure came after many years. It’s still hasn’t been resolved . My consultant does both private and nhs. He said there’s no point in private because I’d be getting the same care and the procedures are the same. However, for me It takes months to be seen. They don’t care. They’ll tell you to come back after 6 months , then come back again. They don’t take it seriously. At least with private there more likely to do things quicker rather then letting you get worse. I’m surprised your saying it doesn’t affect your life.

You do make a fair point, if this was NHS I’d be sent round in circles... I think perhaps the consultant directly went to all these tests to avoid guesswork and prolonging the real diagnosis.

I’ll go ahead with it, but honestly I’m so bad with medical procedures, I just keep avoiding them as much as possible.

It does affect my life if I think about it, but perhaps I’ve gotten so used to the inconvenience that I never imagined it was something that needed to be examined medically. Because I’m not unwell per se, I was just taken aback at the battery of invasive tests prescribed.

Yes the frequent urination and terrible period pain affect my life, my work and my holidays. But I just got so used to it that I never even thought to seek care, just suffered really...

My friend just told me that having a catheter inserted is the worst pain she ever felt and I just came across five different you tube videos with similar horror stories. I can’t imagine something going up such a tiny opening and it not be excruciating.

Has your friend had the same procedure? As it’s very different having a fine catheter inserted with numbing gel and lubricant being used during a planned procedure than say during a heavy bleed after giving birth or during an emergency.

@AlitheAllosaurus

Has your friend had the same procedure? As it’s very different having a fine catheter inserted with numbing gel and lubricant being used during a planned procedure than say during a heavy bleed after giving birth or during an emergency.

Yes same procedure 😔 she said the Catheter insertion made her cry it was so painful... I saw a video of the process and it looks like medieval torture.