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!

I was very nervous about it but I didn't find it painful. Having a smear test is worse.

I've had urodynamics 5 times. I'm a complete wuss but honestly, it's really not that bad. Have always been either behind a screen or in a proper toilet cubicle with the special toilet.

The catheters they use are tiny, and certainly not painful like standard catheters can be.

Little bit worried about the poster who said it went into her vagina, I assume she means urethra.

There are treatments for overactive bladder, I know because I've had them. Starting with bladder retraining, various medications, instillations directly into your bladder, bladder stretch, Botox, sacral nerve stimulation, then you move on to surgical options which are more invasive.

Having tried all those options, I ended up having a bladder augmentation operation, where they take part of your bowel and line your bladder with it to increase it's size and try and numb the nerves.

If that doesn't work, you're left with the option of a urostomy or a mitrofanoff. I opted for a mitrofanoff and also had my bladder removed and a new one made from bowel. A urostomy is more common, not many places do the mitrofanoff as it is very specialised.

I've been seeing drs and having tests on and off from the age of 18. I only had the big surgeries in the last 6 years, as I was a single parent and no way could I have managed the recovery when they younger.

I also had to get referred to London, as my local hospital only really did medication as treatment, apparently the CCG didn't find anything else. Luckily my GP was willing to refer me to a specialist hospital (UCLH) who started with Botox and carried on from there.

Hence my 5 urodynamics tests at various points in my life at 3 different hospitals!

@Ilovefluffysheep wow, that’s super helpful information thank you so much. I’m so sorry to hear you had to have all those procedures but I, glad that you were able to get referred and hopefully got most of it sorted. If I have a super low threshold of pain, how bad do you think the urinary catheter going in will be?

Did the rectal catheter hurt? And on a scale of 1-100 hour humiliating was it?

I’m glad I’ll have privacy to wee, but I tend to freeze up if I’m under “pressure”. For example if someone is waiting for me to get out the door and I need to use the bathroom, the wee just won’t come out even though I’m desperate. So every time I’m stressed or someone needs me to go quickly for whatever reason, my body just doesn’t cooperate.

My reactions to such simple procedures should tell you why I decided never to have kids because I just can’t cope with the prospect of childbirth. Nightmare...

I have a very low pain threshold (I cry when I take plasters off!). The rectal catheter is slightly uncomfortable rather than painful, but it's over in less than a second.

Urinary catheter they use loads of lube, and it was honestly a 1 out of 10 pain wise.

They are always very careful to protect your modesty as much as possible, so although it's not a test to look forward to, I've never felt any kind of humiliation.

It really is worth going through it, it's definitely worse in your thoughts than the reality (believe me I've been there!). They can get a lot of information about how your bladder is behaving, and how to move forward treatment wise.

I’ll book it in, but honestly I hate medical procedures so much. And I’m absolutely dreading this one. Hate hate hate this. 😫

These sorts of experiences just remind me why I made the decision to adopt and not give birth. It’s genuinely not for me

I had this done recently on the NHS. It wasn’t painful at all. They used lubricant to put the catheters in. I was chatting to the nurse throughout and was left alone to wee, the nurse waited outside the door.

It’s never pleasant having a medical procedure but i barely felt a thing and the most uncomfortable part was getting up to wee with a completely full bladder.

This procedure is done many times a day, it’s the equivalent of a dentist looking at teeth to the nursing staff that do it!

@Ilovefluffysheep
No it was definitely inserted into the vagina. I had it inserted in three places. The rectum, urethra and vagina. If you look online, it does say vagina.

“A third catheter is placed in your vagina if you are female, or in your back passage (rectum) if you are male. This is also attached to the monitor and measures the pressure that the rest of your body is putting on your bladder.”

I guess they don’t do that for all women. I wish they didn’t for me as i couldn’t cope with the pain.

Nobody likes having medical procedures done, you either get them done or suffer on.
Try not to build it up so much in your head, the reality isn't as bad

I have an embedded urine infection which causes similar symptoms. The test for this is looking at fresh urine under a microscope and counting cell numbers...not many nhs labs seem to do this. I have to travel 2 hours to London for treatment. A blood test wouldn’t pick it up.

The standard nhs msg tests generally say I don’t have an infection.

Msu not msg!

@CovidCorvid that sounds terrible! Is it painful to have the embedded infection? How was it finally diagnosed? Did you have the Urodynamics test too?

I’ve never had the urodynamics test. I have/had near constant pelvic pain and feeling like I needed to wee all the time. I don’t have a burning/stinging when I wee....so not like a typical uti. I got diagnosed when I asked to be referred on the nhs to the LUTS clinic in London.

@Pepsimirror, I stand corrected then! Have only ever had a catheter in my urethra and rectum. Well, apart from my last one, as I now have no urethral access as my neobladder wasn't connected up (at my request) so access is via the mitrofanoff, which is a channel through my belly button.

Op, hope it goes ok for you.

I can guarantee your arse and bladder are no different anyone else.

I've had this and none of it hurt at all, it was fine, and then they were able to help me with my leaking and I don't leak any more which is amazing!

Just do it, it's honestly a walk in the park.

@starrynight21 sorry to hear of your awful experience

@BobbiPink after my urodymamics I was prescribed a course of instillationsthat had to be inserted with a catheter, it was really not bad at all. I think your friend has been unlucky, and her experience unusual.

The medication @Cocolapew mentioned, vesicare, really made a difference to me.

Generally patients go private because they don't want to keep hanging about waiting for tests. My GP fobbed me off for a long time, (although there is value in measuring input/output before jumping to invasive tests) when I went private I had urodymamics followed by bladder stretch in a short space of time.

As an aside I didn't have any catheter in my rectum for the urodymamics, but did have one in my vagina. Different hospitals' procedures will vary slightly.

@BobbiPink

Did you have the urodynamics in the end?

@Pepsimirror I was just about to post an update myself!

I did have it in the end. The catheter going in was absolutely hideous and the balloon in the bottom was probably the most humiliating thing that’s ever happened to me.

As I had predicted, I couldn’t wee in the toilet they had in the room even though they went behind the screen. I just couldn’t, both times (at the beginning and the end).My anxiety closes up my muscles and it takes me ages to wee when I’m stressed even at home, so doing it with an audience was impossible. Thankfully, they didn’t want to waste time so they took me to the other toilet which had the same set up but was completely private.

With the various tubes in, I couldn’t wee at all even though I was desperate. There naturally some leakage, but my muscles wouldn’t relax enough to let me wee. So they gave up and let me do it in the normal toilet and took an X-ray after to see if I had emptied.

I’m very lucky that this was private, I doubt the NHS would have been able to provide all female staff, or had the resources to be this patient.

Anyway, this might sound strange but I’m really upset that the test was clear 😂😂😂 I could have told them that there was nothing wrong with my bladder 😡 So all that nonsense for nothing!

It’s left me with more questions than answers. How come the ultrasound showed I wasn’t voiding properly and now suddenly the urodynamic is all clear? How do we explain the frequency then?

The worst bit is that it’s agony to wee now 😭😭😭 Any suggestions on how to make it easier? They gave me antibiotics and I don’t have fever so it’s not a UTI, it must be that I’m sore from the catheter.

I’m holding it in as long as I can because I don’t want to wee, it’s so painful. Is this normal?

@BobbiPink

I didn’t get painful urination after the urodynamics. They did give me antibiotics but also because I had a cystoscopy 2 days before it so just in case. Did you make sure you drank loads of water after the procedure? They told me to do this so I don’t get a urine infection.

Did you have a follow up with the doctor/consultant about your results? If you aren’t emptying properly then clearly there is something wrong with your bladder.

What I find most bizarre is that from my experience the gp prescribes medication for the overactive bladder and you also have an ultrasound. They get you to drink so much and then empty to see how well you’ve emptied the bladder. Then all the other stuff that comes after that. It’s strange they just put you for urodynamics testing without doing all this stuff first.

@Pepsimirror I did drink loads of water, but it was still painful. It’s better now, it just got better on its own. They didn’t give me any medication yet, but they did do an ultrasound which is when they decided I needed urodynamics testing as well. I just think the environment is so artificial, it doesn’t really give a true picture. I know for a fact that my bladder doesn’t empty properly but because they filled it up so much, and so quickly and then I went to the loo straight away, it showed a perfectly empty bladder. Not sure how this test has helped at all, the problem remains as is...

The catheter is probably what caused the pain - they aren’t the nicest of things. But I’m glad it has resolved, @BobbiPink.

@BobbiPink how are you doing now? I've also had frequent urination since April. No UTI. Having a flow rate test done on Tuesday. Have they found out what's causing your issues yet?