No shame…

incontinence, patient / Tuesday, October 30th, 2012

I know, I know you must all be sitting at home thinking what on earth happened to thatwoman after she got all embarrassed at a urogynae appointment and spilled it all online. Why did she stop blogging? Is she dead? Or is she still scrabbling for her Oyster card and messing up her life?

She is, of course, still around AND still unable to function as a normal commuter. And just too stressed about too much, too scared, too worried, too too too too everything, including too self-conscious about being far too much information last time.

So how do we get her back on to the stigma saddle? Where to start? Depression? Smoking? Chaos? Parental angst? Actually with the second part of the piss poor poor piss story. With what happens after your initial assessment, when there are surgeons taking an interest in your bladder and wanting to check how dynamic all your urinary behaviours and faults are. Grab a cuppa, peer into the piss void, you know you want to…

I had my hospital appt the other afternoon. This time I managed to avoid actually pissing all over my clothes and took my husband with me. I can confirm it is a lot easier to cope with extensive incontinence testing when someone who loves you is waiting outside and you have babywipes and a nice jumper in your rucksack.

I would say I don’t know why I was in such a state and wobble about going (this was the big assessment to check whether surgery would actually be an option for the appalling stress incontinence I’ve had since my first labour and delivery). And after so many years of physio it seemed weird that I would have a cataclysmic meltdown at the point help was on the table, especially when I’ve tried very hard to be a fanny feminist and to do, in my small way, for incontinence, and especially for those who are functioning but with pretty terrible incontinence, what Mind and others are trying to do for mental health.

But I do know why I got so upset I couldn’t write about it: because it is rank and depressing and really upsetting to be incontinent, and fucking lonely too. But that’s not the story today.

Usually I try to be grown up. I hate that I meet so many women who have nowhere to go with their distress and no idea whether there is help. But no-one, really no-one, can be the upbeat incontinent woman all the time, because it really does and can rule your life, which is why I pulled myself back to the doctors for the d-day public analysis of my broken twat.

The short of it is this: I went, pissed all over my feet in an x-ray room, and it was all good. The consultant was ace and offered to operate as soon as. It was the sort of vindication and reward, and completely odd mixture of euphoria and heartache, that I don’t have the skills to describe.

The test, however, the urodynamics test, that is the sort of ghoulish devilment a gore-whore like me can really sink her teeth into. Pretty grim, but something I wish I’d read or known about from the perspective of the pisser rather than the piss monitors. ie I really wish I’d heard about it in more than the very clear, kind, and ‘sort of’ accurate descriptions I found in the letters and leaflets and websites I trawled before I went. So here goes…

First off, I would do it again. I really was surrounded by destigmatising kindness. The very best treatment. The sort that is so kind and humane it is the reason you carry on and evangelise about help, even though it sometimes makes you die a bit inside.

Take the incontinence nurse. Let’s call her Carol, she had a Carol sort of face and her straight up kindness was so quietly but firmly reassuring that she made all the catheters and things just seem so normal. Honestly, she was fiddling with my ass and other holes and then using wires to attach me to a fucking machine with the air of a kindly school nurse giving you a pad when you started your period in PE. I burned, but that was my shame, not her projection.

‘That’s lovely,’ says Carol, when I emerge from a changing room ready in my gown. ‘But you’d better take your socks off my love’.

Before that, before Carol shoved in a balloon of some sort, with some technically named straw attached to fill me up and feel the pressure, I entered a surreal nightmare of Jess Franco proportions. In the bowels of the hospital’s corridors of shame (my term, not theirs) are the special toilets. Toilets where you are asked to sit on the one with the silver seat not the normal one. Sit on the silver bog and wee on to a spinning propeller. A propeller! And this isn’t even the good bit.

I walk in and survey both loos. My bum is cold in my gown. I take a deep breath. I can wee on a propeller, I’m a grown up. I sit and try to ‘relax’. The wall moves, there is a hidden door. Though I’ve locked the main door, the room is actually attached to some others behind it. And there is Carol! She’s popped up, from behind me, to see how I’m doing.

She ushers me to be attached to the monitors and to lie on a big white wipe clean bed in a radiography room where some people are milling. It is not unlike the bit in Charlie and The Chocolate Factory where they enter the Wonka TV studio. Everything is white. The staff are in those anti radioactive anti X ray aprons. They look to me like they are in galoshes.

‘Don’t worry, Lucy, this is a wet room,’ says Carol.
‘You mustn’t be embarrassed if you leak on the floor or anywhere,’ the radiographer concurs. ‘This is why you are here.’

The scan set up is pretty weird. You have wires protruding and the whole thing made me go a bit queer and pale. They basically fill your bladder up bit by bit, after introducing the team. ‘This is Jim the scientist’ says Carol. (At least he looked like a Jim).

‘Awesome!’ I think.

‘And your consultant is just around the corner.’

I feel rude. I’d turn to acknowledge him but I don’t want to move on the bed in case I dislodge something.

Jim the scientist is very kind and manages to be discreet whilst talking loudly and clearly about a series of fictional scenarios which may or may not chime with how much I need a wee as they pump cold stuff through a straw up my snatch.

He keeps asking me, as he fills up my bladder, if I feel like I need or want to do a wee. The hilarious thing is, though I can see, with my eyes, that my bladder is growing, and though I feel really bloody strange and scared, I don’t know. I don’t know if I need a wee. Or want one, for that matter. For the first time in five years of being ruled by my bladder and hyperconscious of its failing I have no idea.

‘Would you pop to the toilet now?’ he asks. ‘Would you go in if you walked past a loo right now?’ ‘Are you beginning to feel any pressure?’ I have no idea. I don’t know why. Nerves? Worry? Shame? Yes, probably shame.

They assure me there is no right answer – I don’t manage to joke about how that isn’t the sort of test I like. I hate tests with no right answer, tests where I can’t get an A*.

Though I do crack them up when Carol asks if I’m allergic to anything and I say ‘cats’ (true answer).  

‘I left mine at home today’ says nice, nice Carol with a wink. ‘Good job,’ I say out loud in the way you never actually do: ‘NOBODY wants me to sneeze’. I can make the wet room work, I decide. This is all material.

And then they tip the bed. Tip it up until I am standing. I rise like Hannibal Lecter and see all the people (who are so nice), the people who have come to watch how and why and when and how much I pee.

The very nice radiologist, who is soothing throughout, warns I might feel faint, some people do apparently. I feel like I’m dying, again. But I hold my nerve and am shaken into reality when I realise I actually do really, really need the loo now my bladder is full and I am standing up. There are 5 or 6 people in the room. I can’t count or be that accurate because I feel like I’ve had four glasses of warm white wine and no dinner. I’m here for this, I read up, but I still nearly cry, nearly cry like a little girl in the supermarket who is about to wet her big girl pants.

Then next bit is awesome. You have to cough and move so they can see how and when and why you pee, what bits of you actually don’t work well at all. To help, because I am helpful, I agree to lift my gown so they can get all views. Still, I fathom, I get to watch it occurring on a luminous screen, all angle weeing as I pee on the floor. This is pretty cool, and almost convinces me this isn’t something I’ve made up completely and should shut up about. It was so surreal I’m letting it fly. Though I still wish I’d shaved my legs.

Then came the best bit of all. I’m standing, weeing and not weeing depending on what I’m asked to do, trying hard not to be nervous as I’ve read somewhere that could affect the test, when I’m asked if I would be able to empty my bladder completely, right there, in front of them all.

Time stopped a bit. I was like: Now? Here? Being watched? Is this the bit of the movie where I become a porn star despite my 70s grooming?

I emit a squeak.

‘Don’t worry’ say the nice radiographer and Carol. ‘You don’t have to, some women find it too embarrassing’.

‘It would help’ says the consultant, ‘but there’s no pressure’. The room expects, though.

And I’m still thinking: ‘SOME? Only SOME of them find it too embarrassing? Not ALL? Jesus, I’m far less cool about this than I thought’.

They seemed a little surprised at how upset I look, though I possibly imagined that as my head is all buzzy and light. ‘Deep breaths,’ I think, ‘If we’re being realistic TWO OF THE ADULTS IN THIS ROOM HAVE STUCK THEIR FINGERS UP MY BUM BEFORE. And be reasonable, thatwoman, the rest of them have been so reassuring and respectfully upbeat. And, bonus, they keep telling you you’re doing really well when you tinkle all over your feet’.I conclude that I should probably woman up and just, well, stand and wee everywhere ignoring the fact that, again, it feels like a bit of me is dying.

So I say, in a slightly scared little voice:’Um, okay…’

I take a breath, with a shocked but defeated expression. The radiographer and Carol suddenly understand my abject misery. They fly over and save me from the most humiliating thing of all time.

‘No, no, my love’ says one. ‘You don’t have to just wee on your feet!’ ‘He means will you wee into this machine here’ confirms the other. I am saved.

They proffer me the bottle, useful for festivals I’m sure, attached to something from Chitty Chitty Bang Bang or the TARDIS in the 80s. It is to measure my flow. I get top marks. Go me.

The outcome was really great. Thankfully they stopped the test before asking me to do star jumps or walk around as I’d heard mooted online.

We had a long meeting, a detailed discussion, another examination in which I urinated freely like a tacky European fountain. But I was high on humiliation by then. And Carol was there, and she helped me clear myself up. ‘He’s here to help you’ she said of the surgeon who is sprightly but assured now he isn’t in a weird lead suit. I love Carol and the surgeon now, they have a quiet but enthusiastic calm and confidence. Perhaps because they actually spend their days making life less shit for people and fixing stuff.

I still almost fuck it all up by wittering. In my defence I felt quite odd (the test is draining, because you are lying down and standing up at exactly the moments you wish you were doing the other and because, as a wise fanny warrior who had done it before soothed later, it is very tiring to drop your dignity completely for a whole afternoon).

In the time it takes to put my clothes back on I convince myself the consultant is going to say ‘No’. Say I’m too young, haven’t done enough pelvic floors, that I’m moaning, or whinging, or too fat, or… something.

He humours me for a bit and then pulls a face and describes my stress incontinence as ‘off the scale’. Good or bad? I want to know, but he beats me to it. He can tell it is awful. ‘What do you want to do?’ he asks and boom, finally the fanny feminist thatwoman rises from the dead.

‘I want you to do an operation and stop this now, because I can’t bear it any more’ she says.

And that’s what he offers – to try and fix me whenever he can next fit me in, which was pretty nice of him given I had just pissed all over his arm and the wall of his office.

39 Replies to “No shame…”

  1. Thank you for your story. It sucks to be you & I hope you get better. I enjoyed your writing. You describe what must have been a fairly draining day with a lot of warmth & humour.

  2. What a fabulously written post. I was cringing along with you because of the level of empathy you created. Thank you for sharing. I echo the other poster and think you're utterly fabulous x

  3. Such kind words. Thank you. It has been an overwhelming few weeks. It was so surreal that it kind of wrote itself. Though I really hope people can tell that I really do love 'Carol' – she is one of the most kind and compassionate people I've ever been lucky enough to be treated by, it is just the situation is so awful and comic in a macabre way…

  4. I thought this was one of the best things I've read in ages. It was elegantly written and expressive. I just wanted to say thank you and well done for your courage and I hope this gets the wider audience that it deserves.

  5. I hadn't seen your last post (or in fact any of them!) but this was recommended by a friend and I just wanted to say- the last three paragraphs made me tear up a little. I think you are fabulous and I think Carol and the surgeon sound fabulous too.

  6. Thank you for this. You are super brave for having the appt as well as writing about it. Well done for publicising your story as it will help others be brave in going to their docs and finding out more. Bless you.

  7. Wow what a fabulous blog, brilliantly written with lots of humour and empathy.
    I too went for a urodynamic test a few weeks ago but fortunately all is fine there, not so good with the other bits though and having surgery for 2 prolapses and perenium reconstruction in a month. I'm the same age as you and often wonder as I sit in the waiting room surrounded by ladies 20 yrs older how I came to be in such a mess so young. A friend told me its because I am courageous and taking ownership of my problem. I like that.

  8. Reading this has made my forthcoming urodynamic testing a little bot less daunting. Mind you, I've had the anal probes and ultrasound done already, surely it can't be any worse than that! Good Luck x

  9. Thank you for airing and sharing. I too have been down the road of scans, urodynamics (I had some v v nice ladies too, only they do make a joke and go and turn the tap on once they've filled the bladder, I think it takes a special kind of nurse to want to be weed on all day). I've been sent to do pelvic floor exercises and its not happening (to any ladies who fancy a go with some cones to tone up, Amazon do them for half the price of Boots). I'm waiting for my next consultant appt with a view to tape surgery. Not looking forward to it, but beats having to cross my legs when I cough, sneeze, laugh, or sometimes, just walk.

  10. sounds like you have a professional on the job! good luck with the surgery.
    me… am an older woman been through the mill and still suffering, am so pleased that there seems to be real help for you now. This is such a debilitating problem, mentally as well as physically and sooo hidden. Yes I feel the shame too but hopefully for you there will be an end to it.
    every good wish to you ….keep going!

  11. Hiya. Picked this up on Mumsnet earlier. Your humility is incredibly heartwarming. I sat at an indoor play area, with my hand over my mouth whilst reading it. Heaven knows what they thought I was doing and anyone looking over my shoulder could have picked up the odd word and been awfully surprised. You sound a wonderfully brave, sincere woman and if anybody can help to smash this subject taboo and get help for all of you need it, then you can. Very best of British to you.

  12. the d-day public analysis of my broken twat… I spat my water at the computer… and just because I feel you so much sister (three 9lb's in three years) a little bit of wee came out. LOVE THIS!! My blog of the wee….k

  13. I'd forgotten the tap! I wondered if they were doing it to cover up the wee sound because *THAT* would be embarrassing after they've wired you up. They are amazing ladies. Good luck with the consultant, heard very good stuff about the tape op. My new favourite thing which makes me wet myself is blowing up a balloon!

  14. I have a great friend who is a paramedic, so totally unflappable and has seen many a grim thing. He said he had his hand over his mouth in horror. It was pretty surreal. Thanks so much though, so glad you found the piece.

  15. Mumsnet should have called in Blog of the wee….k! So glad it made you laugh. That is the trouble, there is no possible dry response: laugh it off (wet your pants), cry (wet your pants), stamp your foot in fury (wet your pants).

  16. Thank you, so glad you found the blog. I sort of crumpled up and cried about it once he'd suggested operating too. I was quite surprised (and pleased) the second I felt like I had some agency in the situation.

  17. Thanks. It is a silent menace, it is heartbreaking not least because so many very simple things can help. And because it is such a vicious cycle of it being so awful and then making you feel too awful to get help.

  18. Good luck with the op! I really hope it is all okay. I like your friend's analysis – though I feel much more cowardly when it is happening than when I write about it!

  19. You are utterly marvellous – you have done brilliantly getting through all of that with some sense of humour intact (how the hell do only some women find it embarassing????)

    Fingers crossed for an operation happening really soon and this all being a memory x

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