Urodynamics - seriously freaking out, about to email and cancel

[whycantwegoonasthree]

Right, so I have partial pelvic organ prolapse - basically the whole fucking lot is caving in from all sides. I've seen a gynae who sent me to a urogynaecologist, I don't really know why – I think to get a full picture of what's going on before they decide what surgery to do. Something about "we don't want to do a surgery that makes you incontinent" - which is encouraging...

They have said they need to do urodynamic investigation, involving tubes in my urethra, rectum and vagina, and then basically being filled up and being asked to cough/pee on demand in a special toilet while the consultant watches.

I cant do it. I have nightmares from all the fucking awful things they did to me when I gave birth, and I'm losing my shit here about it. It sounds humiliating, mortifying, impossible. Honestly don't know what to do. I think they won't help me with my pelvic issues unless I do it, and I can't do it. I can't. I can't even pee with the bathroom door open.

So everything will fall out, and will basically be an unfuckable horrific mess for the rest of my life. I'm just sobbing here, and panicking.

Anyone know what my options are? Are there any?

Sorry for the babble, I'm in bits. I'm not doing this, but if I don't do it what kind of life do I have? Help. Please - if anyone knows. There has to be another way...

When is the appointment?

Could you speak to your doc about how you feel and ask if they can give you anything to reduce your anxiety for the procedure?

Didn't want to read and run, I'm like this with the dentist. Tbh it does sound horrid but maybe if it reduces chances of things being even worse in future...
I'm working up to emailing dentist with meditation, am sure you don't have the time for that, just really good luck with it all 💐

OP I haven’t experienced this myself but I remember reading another thread about this same thing (worth doing a search) and a bunch of posters who’d had it said it wasn’t as bad as they’d imagined, and some of the HCPs who do the test also posted.

and strength vibes so you can get yourself through this and get the treatment you need.

Can you afford to go private just for the investigations? If yes they may be able to spend some time with you discussing options.

If no, I would advise contacting the consultant's secretary. Find out if it's a man or woman - if that matters to you - and advise that you have prior trauma. Make sure there are no students there etc.

I really hear you. I had trauma prior to my twin delivery due to being assaulted by a family dr when I was a child. They wanted me to give birth in stirrups, naked, watched by 10-12 people. I couldn't do that. I dealt by getting angry. These people were not going to harm my babies - in your case, prevent you accessing necessary care. I was not going to cave and lose control. I did a lot of hypnobirthing and visualisation, and was very clear in advance what I would and wouldn't tolerate.

I don't know if that helps but tbh I would go in assuming they will not help and you have to rely on you. I'm sorry though.

I asked about sedation or anti-anxiety meds - apparently no, because you have to be able to follow instructions, pee when they tell you to, etc.

I'm not fucking doing it, but I'm so depressed at the prospect of living like this forever. I'm feeling so desperate about it. It brings back so many horrible memories of being cut without anaesthesia, left to pee myself after they took my catheter out before I had use of my legs or even the realisation I was peeing, then getting told off for it.. the procedures i've had to have for my colitis, everything. I'm so fucking done with it all, this feels like the last straw.

Oh my lovely I can understand you being anxious. I'm a nurse and have assisted with a few of these procedures. How well do you know your consultant? The urologists I assist with are lovely and are as quick as they can be. We know that this can be a very intimate procedure and we know patients are nervous so the team will I'm sure support you and talk you through it all. The part where you have to pee is at the very end. We all tend to leave the room at this point to give as much privacy as possible. The consultant and radiologist are often watching the screen.

I'd say its a worthwhile investigation, but I know not an easy one. Xxxx

Radiographer sorry xx

I had this (or something extremely similar) done for investigations into random bladder issues and I know it sounds grim but really wasn't as bad as it sounds.

There was a nerdy male urodynamics tech standing analysing the computer output in one corner on one side of a curtain and a lovely motherly female specialist nurse who did all the hands on stuff with tubes while we were behind a curtain and then she withdrew as well. They were considerate of my privacy throughout, and I didn't have to urinate when other people were watching. When it came to the time when I actually had to "perform" I simply couldn't with them in the room - even behind a curtain - so they volunteered to leave the room completely for a few minutes and let the electronics do all the recording.

Now I'm more blasé about this stuff than you are (because I haven't had the same trauma) and it's possible that your investigations will be slightly different but I hope that's reassuring and that if you ask more questions you may find out that the details aren't quite as bad as you suspect.

Thanks all. This is private - my GP said the wait on the NHS is likely years right now and it can't wait, as will get worse and be harder to fix.

Urologist I saw is apparently very good, but wasn't very friendly. His receptionist has been lovely, but there' not much she can do. Reassurance isn't getting me anywhere. There's just no way i can do this.

I broke down during a tans vaginal ultrasound before Christmas, because they told me to come with a full bladder - which I did - and then kept me waiting for over an hour. I thought I was going to piss myself (because I'm there partly because of my inability to hold me wee in, FFS) but I couldn't keep it together and was hyperventilating - the works. I was so ashamed...

I'm not a pathetic person who loses her shit on a regular basis – I don't – but this I just can't handle.

And I know you're being kind and saying it'll be fine - but it won't because I can't do it. I need other options, or I don't know what I'll do TBH.

@whycantwegoonasthree, I've done this (prolapsed uterus, rectum, bladder and urethra).
My experience was that I had an expert female who did my urodynamic assessment (I think she was someone who was trained to do the assessment and then passed on the report to the consultant). She was very respectful and protective of my dignity. There was no-one else there.
If you think your experience might be different, please call the hospital and ask to speak to your consultant's secretary. They will be able to tell you what to expect.
My ultimate experience was that I had two operations including a pelvic floor repair. I didn't get the urethrocele repaired because it would have compromised my ability to wee.
Have you seen a specialist physiotherapist?
They might also be able to help you with exercises to strengthen your pelvic muscles and so help with retaining urine.
In my case, I was taking codeine on a daily basis and couldn't stand or sit for any length to time due to pain. That is all gone now, admittedly it wasn't a party but I don't regret it at all.
I really urge you to speak to someone so you know what to expect and take it from there. Just to re-iterate, my experience was not glamorous, but it certainly wasn't disrespectful or embarrassing.
Good luck.

Honestly, they'll need to see what's going on in real time, I'm not sure there are any other options I've had a defecating progtogram for similar issues postnatally, and because it was done fluoroscopically (X-ray), the room was darkened (this really helped my anxiety and embarrassment). The results were invaluable (rectocele & small cystocele), I was referred on to a women's physio who helped me to avoid surgery (the consultant recommended avoiding it for as long as possible). Yes, ok, the physio involved more exposing my nethers, but the physio was incredible, reassuring, kind, and helped me so much. Perhaps that could be an alternative route?

Cross-posted with Sideswiped there, glad to read more positive physio stories!

I've had urodynamics twice. They will shut you in to a private toilet if you ask. Honestly it's painless and a little undignified, nothing more. Both times I had lovely, caring nurses who made the process as easy as possible. Yes, they are stressing your bladder to make you wet yourself. I ended up having a Burch procedure as a result and it made my life do much better x

No one can force you to do it, but equally no one here can advise what else there will be options wise. I’ve watched several urodynamic procedures as a student nurse and they were not the horrendous ordeals you are describing. It really was handed sensitively and no one had to “pee on demand” rather, privacy was given when the patient needed to pee… the “tubes” in the vagina/rectum are like fine filaments- not thick at all, like mm not cm, and it is not even as exposed a procedure as a smear or birth etc…
You understandably sound stressed and anxious about the whole thing, I wonder if there is a specialist urology nurse you could speak to at the private clinic?

Just a couple of points.

You never need a full bladder for a trans vaginal ultrasound. They always ask women to empty first.

Secondly, you can still have your prolapse fixed but the point of these exams beforehand is to ensure they don't do it too tightly or not tightly enough.

I have had a prolapse repair but many years ago. I didn't have to go through what they are asking you to do.

The risk for you is that they will do the op and either make it too tight (and have to be undone) or not tight enough and you will need more surgery.

I suggest you talk it over again with the urogynae who would do your surgery. I also suggest you make sure they are the right person to do the operation. Urologists usually work with men and repairs like you need are done by gynaecologists, or urogynaecologists. Have you done a bit of 'due diligence' on the surgeon and their success rates?

Thanks @JinglingHellsBells.

I had to have a full bladder because they did an ordinary ultrasound first, then I was allowed to pee before they did the trans vaginal one. So I'm not lying or being stupid about it - just didn't want to write an essay about essentially a tangential experience added for context. I don't know why they needed to do both however. But they did find a 'significant' (don't know what 'significant' means) ovarian cyst which they said might account for some of my pelvic pain.

Honestly though, who the fuck knows. About any of it.

(And I've no idea how they expect you to arrive with a full bladder and then wait an hour, when part of the reason you're there is for issues with incontinence.)

And yes, it was a urogynaecologist I saw, not a urologist - that was typo. This was the guy recommended by my gynaecologist, who in turn was recommended by my GP. I've gone private because I can and because I was advised the NHS waiting list run to years currently... He's apparently very good, but as is often the case with consultants, his strength is evidently not in his bedside manner.

I'm mindful of the general strain felt by medical professionals right now though - it was just before Christmas, maybe he was just under pressure.

But I left the consultation feeling confused, and upset - I was being asked really intimate things and he was just really... unfriendly... Not unkind, just not kind. Brusque. Didn't explain things when asked - that sort of thing. Doesn't mean he's not excellent at the mechanical side of things of course - which is essentially what I'm going to him for at the end of the day.

I understand that the purpose is to make sure they don't cause more problems than they fix with surgery. I do understand why they want to do it - I just don't think I can.

I've emailed the consultant's receptionist asking what my options are - hopefully I have some other than retraumatising myself or not having the medical help I need.

It's all so fucking shit though. I feel so deeply unsexy, I don't even want my partners to touch me or look at me.

@whycantwegoonasthree My advice is you find another consultant. There are lovely ones around and even if you have to travel out of your area, the world is your oyster! You are paying for this, so the least you can expect is someone with a half-decent manner and some empathy.

Shop around and see who is else is out there.
(I've had private medical care for years and met one consultant for bladder issues I didn't take to and never went back.)

Not sure where you live but have you tried searching your local hospital sites, or national sites like HCA? if you are near London you can have a huge choice.

I’ve had this done twice; been catheterised dozens of times too unfortunately (not post natal injuries, congenital disorder) .

I won’t lie, it’s unpleasant and I’m coming at this as someone who was sexually assaulted by a doctor and who has PTSD following horrendous surgeries in my teens and twenties .

However, the catheters they use are very, very small indeed - you don’t feel then as such . The rectal one felt a bit uncomfortable but manageable . They pop them in and then tape them to your leg and then hospital gown back down and blanket over your knees, and it should be a female nurse or at least chaperoned by a female .

The first time I had urodynamics there was two nurses, they filled my bladder whilst lying down covered with a blanket, got me to cough a few times, then shut the door to let me pass urine if I could .

The second time due to covid it was done on an (empty) ward as the clinic was being used for covid ITU or something, filled my bladder sitting up, again with the coughing, they again allowed me privacy and shut the curtains . I was told I had to strain/push as they needed me to pass even 20ml and I wasn’t managing at all (nerves!) . Not pleasant at all but doable . The nursing staff - three women - could not have been kinder the second time, they were wonderful .

I won’t lie, I had a horrendous panic attack after the second time (not helped because I was in the same bed space I’d been in for four previous operations but that’s just sheer coincidence) however that settled with about 48 hours - lots of breathing exercises and looking after myself (ie a bath) .

I’ve had that experience with urologists too that they’re very ‘abrupt’ , having seen six or seven now across three major hospitals . If you can see a female one (like hens teeth) that can be a help - but not always easy as it’s not a field that’s overrun by women in my experience .

It did help me tk get an idea of how my bladder is working, was done before and after a cystoscopy and surgery (so urodynamics 2018, cystoscopy 2019, urodynamics 2020) and it does give them a lot of very useful info so worth doing it if you can bear it .

I've had one, it's not something I'd sign up for voluntarily but I'd do it again for medical reasons.

Like you I was really upset at the thought of the whole procedure and had to stop myself cancelling several times, it really wasn't as bad as I'd built it up in my head.

My urologist is very much to the point, and I appreciate that as it removes the embarrassment and transforms the appointment into something clinical which is easier for me. I'd suggest that you're specialist might seem more human once the results from the testing is available and they are able to talk to you more about what is necessary

I had urodynamics and it wasn't pleasant, but much better than I expected. It was less uncomfortable than a smear and much quicker than a trans vaginal ultrasound. It was definitely better than a colonoscopy.
My consultant was a female but also quite abrupt. The other staff were all lovely, from the other doctors to the physio and nurse.

My womb falls backwards and I always have to have a vaginal ultrasound and they still always ask for a full bladder 🤷🏻‍♀️

I read a thread a little while ago about this and it freaked me out! My bladder hates me and I’ve been getting scans and I'm terrified they'll want to do this test! I cant do it either. Just no way. Even though my life is ruled by my bladder just now and it really impacts my life negatively
I just can’t do that test.

So no advice but a hand hold from me. I hope you're able to find a different test.

I've had to have a similar procedure as part of the package of tests I had to have before a full hysterectomy. It was ok.

Op I know this fear is not logical so won't respond to logical arguments: just go to your consultant or gp and ask for something like Xanax to help you through (obviously you need to check that this sort of drug will not interfere with tests). I took half a Xanax to get me in to the hospital the evening before my op and another to help me get wheeled down to theatre! Although the doc gave me an entire pack, I didn't ever feel the need to take them again, and have since thrown them out, if you are worried about getting hooked!

I would also recommend seeking out a consultant you are comfortable with and being totally honest. Say you have an anxiety disorder (you don't have to go in to details) and that you simply can't go through with it; do not minimise, ask them how you can work with you to make this happen! All they are interested in is getting the most accurate picture possible of your particular physiology, so they can do the best operation possible.

Maybe you could ask if an anaesthetist could work with you to sedate you slightly, but obviously not to the point where you can't function, just to a "slightly drunk" point? I'm not a HCP, so have no idea if this is possible, and you will probably have to pay more, but worth a shot?

Good luck!