Living with Incontinence

CW: Pregnancy

I know my blog has a far-reaching reputation as a bastion of glamour, elegance, and good taste, so I thought I should bolster that further with yet another fun post on bodily functions.

Despite attempts by brands like Tena to normalise incontinence, it remains a deeply embarrassing thing to suffer from. I think society associates it with either children, and therefore childishness, or age, and therefore senility. When people do give serious thought to it, the discussion tends to focus almost entirely on people who have recently given birth and suffer incontinence as a result. In reality, however, people of all ages and biological makeup suffer incontinence.

Broadly speaking, there are two types: stress and urge. Stress incontinence is where it happens as a result of some sort of trigger to the bladder – sneezing, coughing, laughing, running, lifting something etc. Urge incontinence is where you can’t control your bladder’s urges and it just goes, regardless of the inconvenience to you. I speak from the perspective of someone who has suffered both since I was around five years old. I’ve lost bladder control from almost every conceivable action. I wet the bed relatively regularly all through childhood, and with gradually decreasing regularity into early adulthood. I lost control and wet myself at school, at church, on excursions, at the beach, in shopping centres – anywhere I went there was a chance it could happen.

Now I’m in my late twenties and the situation has improved dramatically, without any sort of useful medical intervention. I had a multitude of tests as a child, none of which resulted in anything other than a diagnosis of urinary incontinence and some horrible-tasting and useless medications. It isn’t related to my endo, although I do have endo on the urethra, and many people with endo do report incontinence as a symptom.

What I want to share with you are some useful tips I’ve learnt over twenty years of dealing with this pesky condition.

1) Pads and protection

This may seem super basic, but honestly, just giving up and wearing pads or undies designed with built-in protection (such as Icon, my preferred brand – good for light leakage only, though!) made such a difference. I used to be a Tena devotee and I think they are probably still the better brand for really big problems. However, as things have improved for me I’ve been able to move to the thinner, cheaper Poise. Importantly, these items are all able to deal with a period as well, but have better wicking and odour-disguising properties.

For those with issues at night, Tena and Poise both offer thicker pads or nappy-type options, but I’ve never found those terribly comfortable. A better option for me was a washable waterproof pad by Slumberdry that I could slip into bed and would protect my sheets if things went wrong. When you’re half asleep and exhausted, you don’t want to have to deal with a full bed change – these pads are great because you just whip out the wet one, chuck a clean one on and go back to sleep. Whilst I no longer used one, these were amazingly helpful when my overnight issues were at their worst.  They are marketed for children (once again, a false impression about incontinence) but there is no reason adults can’t use them.  The only downside for couples is you might find they protrude onto your partner’s side of the bed. These are also a great, discreet-ish option for travel that fold easily into a suitcase and save you the embarrassment of having an issue on hotel bedding.

2) Keeping supplies on hand

Throughout all my school years, my mum made me take a little bag with spare undies and a plastic bag for the dirty knickers in it to school just in case I had an accident. It was deeply embarrassing but also extremely necessary. It’s not a bad idea as an adult, either. There are a myriad of situations in which spare underpants are useful – maybe it was a hot day and you had to run to catch the work bus and by the time you get in you are just so sweaty, or a sister gets her period unexpectedly, or you spill coffee all over your trousers, or you get hospitalised and there’s no one in town to bring you an overnight bag. Clean undies are just really useful things to have. I carry a little bag of Poise, too, just in case.

3) Make knowing the location of the loos a priority

If you are going somewhere for the first time, take note of public loos. On long road trips, mark of petrol stations for regular, pre-emptive bladder strikes. Walking through a shopping centre, note any and all signs that point to the water closet. Preparation Prevents Piddling all over yourself, as the saying goes.

4) Don’t wear jumpsuits, playsuits or rompers

Just don’t. They are cute and all, but getting caught short by your own clothing isn’t cool. Been there and very much done that.

5) Tell people you can trust

It is embarrassing as all heck to tell someone you have poor bladder control, but having a stalwart sidekick who will watch your back, hustle you to the toilet, or sacrifice a jumper to tie around your waist if things don’t go according to plan is such a valuable and heart-warming thing. They’ll be the one to raise the issue of toilet stops on a road trip to hide the fact that it’s always you who needs to pee, double check that you packed enough underwear, and translate that panicked look you get when you laugh too hard and feel something let go.

These are all good tips for parents whose children suffer incontinence, too. Keep them well supplied and give them the tools they need to be able to handle a quick bed change at night – you’ll get more sleep that way too. Check toilet locations, and give them easy-to-escape from clothing. With their permission, tell their teachers so they don’t get refused permission to go to the toilet at school, or get detention for being late to class because they had to pee again. Most of all, build their confidence. Don’t let them feel dirty, defective or unworthy, because other children will do that plenty if their secret comes out.

Anyone else have any tips or tricks? What have your experiences with incontinence been?

Endometriosis Education in Schools

I am one of those people who think that schools should be a place that you learn more than just the reading, riting and rithmatic.  I think schools should teach a few life skills as well.

I know it isn’t a popular view, and the counter-argument tends to be that parents should be teaching these skills.  I agree, parents should be.  But if there is one thing my work has taught me, it’s that they don’t.  Some lack the time, some lack the skills, and some simply lack the inclination or ability to have their life together.  Should the burden fall on the education system to make up the gap?  No, but where else will it fall?  If it doesn’t land on someone, our children are going to keep being failed, and it isn’t their fault.

I’m not suggesting that teachers should suddenly be interrupting maths to take their students through the basics of tax returns and changing flat tyres, of course, a la To Sir With Love (but look at what a difference he made!).  It is something that needs additional funding and additional teachers.

Where am I going with all of this?  Well, I want to talk about why and how I think endometriosis should be discussed in schools.

Most schools do some form of sex ed anyway.  In my years at school I experienced a number of different styles.  In Year 6 we watched a video of a woman giving birth, with a close-up of the baby crowning.  That was traumatising as a 10-year-old, let me tell you.  In Year 8 we got some vague talk about periods.  In Year 10 we got yelled at by a right-wing American lady whose catchphrase was “Keep your pants on!” In Year 12 we were treated to a run-down of all the common STIs you could get, with obscenely graphic photos.  All in all, sex ed was a mixed bag and left a lot of questions unanswered.  Certainly, none of them taught me much of use, such as the value of consent or the importance of peeing after intercourse.

All in all, sex ed in Australia is a bit of a shambles, particularly in religious schools.  Don’t get me wrong, I loved my Christian schools – great teachers, great friends, great courses – but the sex ed was, well….

Image result for if you have sex you will die

Anyway.

I’m not opposed to promoting abstinence.  It’s 100% the most effective way not to get an STD or fall pregnant.  It’s well documented, though, that abstinence-only education does not actually help students or reduce rates of teen pregnancy.  I would really love to see a sex ed course that discusses the value of abstinence but also acknowledges that not everyone will remain abstinent, and give them the information they will need if they don’t.  I’d like it to cover the sciencey side of things (anatomy, periods, puberty, fertilisation, pregnancy etc), the emotional side of things (hormones, temptation, relationships, consent, domestic violence, red flags), and the basics of common diseases.  By common diseases, I don’t just mean STDs.  I learned a lot about HIV during sex ed, and that’s important, but roughly 25,000 people in Australia were HIV+ at the end of 2015.  The numbers for endometriosis are more like 1 million, but we never heard a word on it.

If students were educated on endometriosis, I think we’d see a lot fewer teenagers labouring through horrific period pain thinking that they are just weaklings who can’t handle a few cramps.  I think we’d see teenagers who’d know that maybe something wasn’t quite right and seeking referrals to specialists much earlier, which would hopefully help end the current massive gap between the onset of symptoms and diagnosis.  Early treatment would hopefully help reduce the impact of the pain on young people’s schooling by reducing absences and increasing their ability to participate in school life.

Moreover, if school staff and administration knew more about endometriosis, there might be fewer deeply unsympathetic attitudes from teachers and school nurses.  Students with periods may be allowed easier access to controlled dosages of panadol and ibuprofen from the school nurse, more frequent bathroom breaks, or little things that would make their attendance as class easier, such as a heat pack or a cushion for their chair.  They might be less likely to be dismissed as drama queens, attention-seeking, weak, not trying hard enough, or deliberately trying to get out of school activities.  Even basic education on the fact that periods can be totally erratic and unpredictable in when they arrive or can have terrifyingly heavy flows may assist some educators in changing their attitudes towards students who are struggling.

It would also contribute to reducing the stigma around periods that sees teenagers sneaking to bathrooms with tampons tucked up their sleeves like the very sight will be toxic to young men.  High school can be a seriously messed-up place and one part of that is the bizarre attitudes of high-schoolers towards all things “feminine”.  If you aren’t girly enough, you aren’t desirable to the boys, and goodness knows that’s what’s important, but if you are too girly you aren’t cool and one-of-the-guys so you don’t get their approval that way either.  Either way, you don’t discuss periods because that’s girl stuff (ew) and boys shouldn’t have to hear about that.  There are some wonderful young men who are exceptions to this and will carry supplies in their bags in case friends start their period, but they are all too often shouted down by highschool groupthink (peer pressure is actually incredibly effective, by the way).  Normalisation of periods, let alone more education about the crippling pain that can accompany them, would go such a long way to making the whole high-school-whilst-bleeding experience easier.

One piece of good news is that Australia’s Endometriosis Action Plan does include more education at school level on endometriosis, particularly in rural, regional, remote and indigenous communities.  These are places that, even more so than everywhere else, really suffer from a lack of proper medical care and education.  I live in a city with two hospitals within a half-hour drive of my house and I sometimes struggle to get appropriate treatment.  Imagine if you live in a small community with one GP (particularly an older male one who is dismissive of endo and period pain) and the nearest hospital, specialist or second opinion is hundreds of kilometres away.  I had to drive all over town to try and get hold of my Zoladex.  People in remote regions may have to travel for hours and still need it to be shipped in from another location.  I’m really glad to see the government planning for change in the provision of healthcare and education.

Do you feel that endometriosis should be discussed in schools?  Should it be part of an expanded sex-ed curriculum, a discreet topic or presentation, or should it come in somewhere else, such as a biology lesson?  What do you think of the Action Plan?  Let me know in the comments.