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Continence Awareness Week 2020: A Patient’s Journey.

17 June, 2020

Here is a collage of lots of photos of women. There are some happy smiling photos, but you may be surprised that perhaps 1 in 10 of the younger women may have endometriosis causing painful periods; up to 25% of all the women may have dyspareunia (painful intercourse) and some may have continual pelvic pain or bladder pain.

And yet they continue to act as if everything is normal and they are getting on with working, being in relationships, soldiering on with child rearing or trying to live a ‘normal’ life – but not really having much of a voice or not being listened to and not being heard.

This week is Continence Awareness Week – I have participated in about 30 Continence Awareness Weeks.

Over the years, I have created wrist bands, made videos, stood in shopping centres and handed out leaflets, created banners that string across major streets of Brisbane and had some articles in the newspaper. Thanks to social media – a week that has often ‘Gone through to the Keeper’ (as we like to say in Australia) without much recognition – now has literally thousands of fabulous posts on Facebook and Instagram promoting the value of seeking help for a urinary or faecal continence issue or prolapse problem. The Continence Foundation of Australia is the peak body promoting education for pelvic floor dysfunction (PFD) in Australia and if you are looking for names of doctors, pelvic health physiotherapists or other health professionals with a special interest in PFD then they have a Helpline to guide you to some people close to where you live who can help. Their number is 1800 33 00 66.

But this year I wanted to write about another mega problem in Australia and that is the treatment of persistent pelvic pain or PPP. We have some very articulate patients at our practice and one of them has written a fabulous article about her journey. It is a story of hope, persistence and perserverence. Her story follows:

PPP and Me: An ongoing journey

PPP stands for Persistent Pelvic Pain. Sometimes it’s hard to articulate how Persistent Pelvic Pain (PPP) makes me feel, what it’s like to live with it, and what it’s like to manage it. Without sounding too much like a reality TV star on their quest to find Instagram fame true love, living with PPP is truly a journey (without the teeth whitening and sex toy endorsement deals). So, for want of a better word, here’s my journey.

Side note: While we’re talking about reality TV shows, an endorsement for teeth whitening products would be great but I’ll settle for anyone out there who’ll give me a few tubes of lube!

17 years old

Ahh, my Year 12 Swimming Carnival. A day I’d rather forget. Trying to put a tampon in for the first time was excruciating. It even makes me cringe now just thinking about it. The whole time I kept thinking “All the girls I know wear tampons. Why can’t I? What will others think of me when I say I can’t swim because I’ve got my period?”

And just as I expected, I got many comments throughout the day telling me to “suck it up and just put a tampon in, you have to earn points for the house. It’s not that hard!”. All I could think was they were right. What was wrong with me? I’m a loser who didn’t try hard enough and couldn’t earn points for my house.

19 – 21 years old

Speaking of cringing, let’s look back on my early sex life! Painful, painful, painful. No other words. Lots of “Why are you so tight and why can’t I get it in? I bet it’s because I’m too big” (boys are just so charming, right?).

During this time, I started gaining more knowledge about the pelvic floor by working with a Pelvic Health Physiotherapist. I began to realise that pelvic pain was a real thing and that there’s help and solutions available. And no, the solutions don’t include my old trick of trying to insert a tampon to ‘stretch’ my vagina.

21 years old

I very unexpectedly fell in love with a very understanding man who’s now my husband. One who never commented on the ‘tightness’ or thought he was ‘too big’. This is when I finally decided to get help for my PPP and the urinary incontinence I was experiencing.

Regular dilator use, incontinence management strategies and information on pain theory gave me the confidence to have a normal sex life and it was amazing. I was determined to make it work and was diligent with keeping up everything I’d been taught. I’m still very grateful for the strategies I was taught early on in my journey.

24 years old

I became complacent and slack, so it was back to the Pelvic Health Physiotherapist I went. Admittedly before I went back, I’d put up with my relapse for about a year. I relearned all the strategies and put them into action but got sent away for more tests to rule out STIs or any issues with my cervix. That led me to a pap smear that had me in tears and the doctor telling me the only solution to my pain was to have surgery to open up my vagina. I’m glad I had the background knowledge of pain science and management strategies to ignore the ‘advice’.

My pap smear came back normal with no STI’s, so I kept on working at all the strategies I’d been taught.

26 years old

It was February of this year that I broke down. I couldn’t handle it anymore. It wasn’t just the pelvic pain, it was the period pain, it was the constipation, it was the leakage, and it was the constant state of fatigue (hot tip: drinking 3-4 cups of coffee per day won’t get rid of this, so don’t even try).

I booked in for my first ever gynecologist appointment. One excruciating pap smear and a description of my symptoms later, I was diagnosed with a chronic vaginal pain condition called Vulvodynia. Suddenly everything started to make a bit more sense. I was put on Amitriptyline (better known as Endep) and after 10 days I gave up on that. I was moody and tired and overall someone you wouldn’t want to be around.

So, I rang my gynaecologist and she referred me onto another specialist to look at my next option – Botox for the pain and a laparoscopy to check for Endometriosis. After seeing this specialist, I booked in for my laparoscopy, hysteroscopy, cystoscopy and Botox with great gusto.

The recovery was harder than I thought but was worth it in a way when I was diagnosed with Endometriosis that got excised during the surgery. That explained the painful periods, constipation and fatigue. I can happily report my periods have been virtually pain-free and my fatigue has drastically improved (without coffee as well!). I’ve been able to exercise properly (in a pelvic floor friendly way with lots of relaxation) and have a better outlook on life. In terms of my incontinence, I was diagnosed with Interstitial Cystitis (Painful Bladder Syndrome) and have cut out several foods (zucchini being one of them – what a bonus!) and I’ve improved drastically in that department and am familiar with the triggers in my diet.

I’m happy to report the Botox has worked wonders for my Vulvodynia. Who knew wearing a tampon and having sex could be so easy?

In saying that, Botox isn’t a cure-all and doesn’t last forever. I’m working with my Pelvic Health Physiotherapist on maintaining the good habits she’s taught me over the years, and I find them to be very beneficial. My main issue is perseverance. If I have a relapse, I’m always tempted to throw in the towel but not this time. My determination to keep up the habits is stronger than ever as I know it’ll benefit me, and also people I speak to who experience the same issues who have previously been happy to accept their struggles.

My message this World Continence Week is: Invest your time and energy into your health. Don’t be afraid to speak up and get help. You’re never alone even if it feels like you are. Above all, invest in you.

Thanks so much B for your great story. You are an inspiration to all the women out their who have suffered with their particular pelvic health issue. It takes courage to write about what has happened over so many years and perhaps younger girls at school may think twice before teasing or scoffing if someone says they can’t participate in an acitivity. If you have a ‘private’ issue – make sure you check out your nearest pelvic health physio and get some help. They are used to chatting about anything and give you the time to do so.

Happy Continence Awareness Week!

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