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Incontinence and Bowel Management for Women, Men and Children.
Women’s Health Physiotherapist Brisbane, Australia.
Pelvic Floor Dysfunction Treatment.

Learned helplessness and some other key words

I sometimes feel like my brain is a bit like my linen cupboard. It’s a bit small for the amount of linen I have acquired over my lifetime and sometimes when I try and squeeze another towel or three into it, the door doesn’t quite shut and it pops open and something falls out. As I read pain articles and books, listen to podcasts on pain science and education and attend new workshops and conferences on pain and absorb more pearls and nuggets of information, I feel my brain has reached its limit and something has to give- my big worry is what? What has now morphed out of my memory and potentially gone for good?

After attending the AGES Conference 2018 in Brisbane over the weekend, it is definitely face and name matching. You see a face and know it well but can’t quite think of the name quickly enough…..an embarrassing dilemma. I have said it before and will say it again- we should all wear name tags all the time.

What I am writing tonight is a little prompter for some great listening and some key words that I am going to slip into many future conversations- whether they be with pain patients, when doing talks or maybe even a dinner conversation (I will sound very intellectual in the last scenario).

Therapeutic alliance

Control the controllables

Learned helplessness

‘Therapeutic alliance’ and the fabulous statement  ‘Control the controllables’ come from attending a recent workshop on Pudendal Neuralgia conducted by the wonderful Michelle Lyons, an Irish Women’s and Men’s physiotherapist who conducts workshops around the world (and when in America for the Herman and Wallace Institute).

Therapeutic alliance is so important- for me the first part is engaging with the patient from the get-go, listening to their story, assessing and instituting a management programme and then encouraging adherence to the programme from the patient. It is also important to make the programme interesting for the patient, relevant for their needs and one that is achievable. Therefore any goal setting must include relevant goals from the patient – they must be the patient’s goals not the therapist’s.

‘Control the controllables’ – if only everyone approached their day, their week, their life, with that statement frolicking around in their head – it would make the days more productive and more goals would be achieved. It is particularly relevant for pain management (pain cure – start brainwashing yourself -say it over and over again – we want cure not management! This sets a new conversation in your brain.)

First deal with what you can – reduce your work hours if work is high on the stress producing scale; go to bed early if a lack of sleep is contributing to increasing your pain; eat healthily – we know a good diet is an essential platform on which to build a good outcome; discuss with your partner what he/she can do to assist in achieving any set goals. Once those controllables are locked in, then you may have the opportunity to focus on some of the harder issues that seemed insurmountable when you were working ridiculous hours, sleeping 4-5 hours a night and eating lots of inflammatory foods such as sugars and fast foods with a lower nutritional value.

Learned hopelessness – I heard this in Dr Joe Tatta’s podcast Episode 92 with Dr Tim Salomons on the Pain Neuromatrix and it was such a light bulb moment for me. I totally recommend that you try and listen to this podcast in full and I have directly transcribed (it is pretty much word for word from this podcast if it is in italics) some of the salient points that resonated with me.

When you go from provider to provider trying to get help with a persistent pain problem (or any pelvic floor dysfunction for that matter) and you have numerous investigations, assessments and treatment strategies and nothing seems to work, then you begin to have a belief that nothing can help and you get into this state of learned helplessness/ hopelessness and this affects your motivation (essential to exercise), your affect (your emotion, you feel depressed, sad, hopeless) and your ability to learn (and we have said many times that good pain education is a fundamental part of starting on that road to cure).

There are a series of experiments describing learned helplessness- two groups of animals with exactly the same stresses (such as shocks) but one set of animals has the ability to escape the shocks and one doesn’t- what happens is that even though the animals have exactly the same degree of shocks or stresses, the group that has no way to control their outcome stops trying, they become demotivated they show signs of anxiety and depression and most importantly they fail to learn in the next instance so when you put them in a setting when they can control the stress they don’t bother – they stop trying altogether. 

An example of this is when patients are scheduled for back surgery and they have a lot of hope and expectation about the new surgery (or strategy)- so when it fails they are then skeptical about any other new surgery/treatment strategy and they demonstrate features of learned hopelessness. There is a loss of the link between your actions having any effect on what happens to you- a lot of chronic pain patients have tried many different drugs, many physios, psychologists, GPs pain specialists and they have still have pain. They have tried and tried and tried and they have failed and failed and failed and we wonder they are all depressed- why are they not trying at the next treatment with your suggestions. They have become examples of learned helplessness patients. Essentially they believe that nothing they can do is going to lead to a positive outcome and if they get better it is by blind luck.

This is problematic and so Dr Salomons has been studying this at a brain level and across the brain matrix there is far greater activation (central sensitisation) if they perceive their pain as uncontrollable. The people who do well when their pain is uncontrollable seem to switch strategies. There are two kinds of coping strategies – an action strategy (based on taking away the stressor) and an emotion-focussed strategy one where they concentrate on dealing with the stressor at an emotional level. This is relevant because in life- somethings are controllable and some things are uncontrollable and working out what strategy to choose at which time is why some people cope with tumultuous events and others don’t.  This is the ultimate perceived control

Dr Salomons believes it is essential to try and intervene earlier with pain patients- to break this cycle of protracted times between when the patient is first experiencing the pain and finally discovering someone who can effectively treat and cure this pain. So a key point maybe working out through a good assessment tool (maybe the Pain Catastrophising Outcome Measure) who is potentially at more risk and particularly getting those people in and treating their persistent pain early enough. (An example maybe someone who suffers an injury at the same time as losing a partner or parent or even their job- this is a high risk situation which would benefit from early effective intervention to prevent persistent pain developing.)

He talks about the importance of becoming aware of the emotions in the body and their interplay with a persistent pain condition. If a patient has a degenerative condition and the physiotherapist decides they need to do a specific exercise for 45 minutes every day to help slow the  degenerative process, but if they do that exercise it will do nothing (ie except just prevent the degenerative process) but it could make their pain worse, the patient is unlikely to do the exercise. The patient is learning if I do a whole lot of work, nothing is going to happen- in fact my pain may get worse.  People (and animals -google Pavlov’s dogs) learn by being rewarded and managing their expectations. If there is no reward there is unlikely to be continuation of the exercise.

One of the biggest problems in pain management is poor expectation management- patients scheduled for back surgery- invest a lot of hope in the surgery ” Finally this is going to be cured say with back surgery – more often than not the surgery fails- imagine how that feels-they have poured lots of hope and expectation into this surgery that person is now much worse than they were before because they will no longer believe you – they are skeptical they are no longer buying in to what you are saying. 

So what do I see as the take-home messages?

  • Use psychology to get them to exercise and use exercise to help them with the psychology- it helps them feel good.
  • We therapists many times have created this hopelessness by repeatedly doing things to patients and not empowering them with self-help strategies.
  • Discourage learned helplessness with patients -inspire them with good education, positivity and empower them with the belief that they can in fact change the course they are repeatedly traveling along.
  • Reinstate perceived control- the extent to which patients feel that they have control.

And yes my brain has imploded!

Slowly we CAN change our habits!

I write about Change a lot because change is what helps us adapt to life’s challenges and especially those challenges that affect our continence state. My first blog on Change became the closing chapter in both my books because Change in our beliefs, habits and behaviours is often what gets us dry, clean and comfortable should we suffer urinary leakage, faecal incontinence or prolapse.

And lately Change is in the air- what with our need to change and adapt to using reusable green bags. I so love the idea about not getting 100 disposable, non-biodegradable bags a month from the shops – but I am still so bad at remembering to carry bags – not so much to Coles because that is so obvious – but to the fruit shop and the local shops I regularly get to the checkout with an armful of stuff and think “Damn forgot the green bags:-(“

With education (shows like War on Waste on the ABC) and practise (being extremely uncomfortable balancing 10 things on top of the pizza bases and then suffering the humiliation of dropping the yoghurt) we will soon get used to taking the bags everywhere or we may actually buy less groceries (which will also probably mean we may eat less food or waste less food!)

Last week I saw a lady who I had seen over the years for urinary leakage issues. She had followed everything I had asked her to try except for the caffeine part of the story. She had struggled to adjust to less caffeine or 100% decaf. She came back in recently still annoyed with her leakage – it was both stress incontinence with walking but also was insidious – sometimes with no apparent provocation. We revisited everything and I had the decaf conversation again and this time she agreed to try for 4 weeks – to come down slowly so there was less chance of a withdrawal headache and to just see if she felt it made a difference. Then it was entirely up to her whether she continued on the decaf or went back onto normal caffeinated drinks (tea and coffee).

I am very pleased to report that she came in very happy. Her problem had resolved and she had even problem-solved an issue that I hear far too often- the problem of the friends or coffee shop owners JUDGING her for choosing decaf?? I mean really who does that- judges someone for choosing decaf? There are so many reasons why someone could choose to drink decaf coffee or tea. Sleep issues, palpitations, significant anxiety issues- yes caffeine will make some people feel more anxious – and of course the reason we are talking about – urinary and/or faecal incontinence.

I asked her to write me a little paragraph about her success and you will see her clever way of getting around the “indignity” of asking for decaf.

Her blog follows….

I came to my pelvic floor physio to get help with urinary incontinence issues with walking. On my first visit she enthusiastically gave me a spiel on good bladder and bowel habits, pelvic floor exercises and lots more including the suggestion to wean off coffee. This just seemed a step too difficult. I was happy to do pelvic floor exercises, bracing, use continence aids such as a specific pessary to help with leakage, but my morning routine of exercise and coffee with friends was going to remain.

However, with ongoing persistence from her, I decided to take the plunge and go decaf. It really was not a drama at all and with my friends rolling their eyes with my “double shot decaf skim latte” order I took it upon myself to buy an environmentally reusable mug and write my order on the cup and now I just have to hand over the cup and say “the coffee” please. No problem at all(!) -and a double shot is just perfect after exercise and my bladder is also much happier.

I have even begun educating coffee baristas that really there should not be an extra cost for decaf coffee and most agree. I am extremely grateful to all the women’s health physios out there who keep persisting with us patients who are reluctant ‘decaffers’ because now my coffee and exercise mornings so much more enjoyable. J

Thanks J for taking the time to write this for me. I always encourage patients to write of their personal experiences as I find real patient stories are sometimes more powerful because they resonate more with other patients.

Now to getting a quote for a “Take your green bags” tattoo on my hand!

 

It’s all a matter of #balance

 

Marzena showing us the wonderful balance poses in yoga

Today Megan had some time between classes so she whipped me up a blog and chose to talk about the importance of balance. Funnily enough in yoga tonight Marzena got us doing lots of balance poses in our yoga class (and I just had to snap her for this blog). This time we are not talking about work-life balance – although that is always critically important – we are talking about the fine line between staying upright and having a fall. I’ve been acutely aware of the importance of good balance over the past three weeks as Mum has been in hospital and is struggling with her balance at the moment.

Mum had a Total Hip Replacement (THR) 3 weeks ago and she won’t mind me saying (I hope) that at a few days shy of 93 that is no mean feat. Of course Prince Philip was the catalyst for a decision that should have been made 10 years ago.

6 weeks post op and Prince Philip walking down the aisle STICK-LESS gave hope to all the oldies contemplating surgery!

Mum has had a painful right hip for a long time but always felt she was too old to go under the knife and so kept saying ‘no’. But when I saw Prince Philip who at 96 had a THR skip down the aisle at Harry and Meghan’s wedding and then watched Mum in absolute agony walking a few days later, I put it to her that perhaps it was time to contemplate the unthinkable- surgery at 93. We went to the Orthopod (I don’t think we can mention his name because of AHPRA) who didn’t even blink at her age. He just said there are 2 alternatives – and the THR will get rid of the pain, the other will give you 18 months pain-free maybe if you’re lucky. I wouldn’t comment and wanted Mum to make the decision, but my aunt Jen kept saying ‘do it, do it, do it’ and next thing she had committed! It was a torrid first 10 days but she was a trooper and now is just pounding the parallel bars at the gym in Rehab daily and home is on the horizon. So this #balance blog is dedicated to you Mum! Megan’s blog follows.

We all expect that our balance will get worse as we get older but should it??  Is this another of those natural processes of ageing that we must roll over and accept and what does it matter if our balance does get worse anyway?  Whilst there are some age-related changes that will impact our balance functions, we must remember the brain is plastic and we can adapt to these changes and find new ways to maintain control and keep our balance function.  This is important in reducing the risk of falls and injury which as we get older has an increasingly significant impact on our lifestyle and ability.

A recent trial conducted in aged care facilities in NSW and Qld had 221 residents perform resistance training and balance exercise for 50 hours over 25 weeks and then a maintenance program for the following 6 months.  The results were a significant drop in falls amongst participants.  (Sunbeam trial 1).  Interestingly, the participants also commented on how much the program improved their general quality of life.

How much do we need to challenge our balance to improve?  How hard should these exercises be?  The reality is that how much balance work you need to do will be individual.  The exercises themselves don’t need to be too hard, just enough to give you a bit of a wobble.  You should start small, maybe a few minutes a day, and as you improve you can progress the challenge.

There’s many easy exercises that you can do to challenge your balance at home.  The main key is to be safe when you are doing them.  Always challenge your balance in a situation where you can grab hold of something if you need to.  You can try with and without footwear, eyes open and closed, and on different (always non-slip) surfaces.  Try to feel how your body balances, the sway is normal and you are trying to control the amount of sway, not stop it completely.  This is our body learning better balance.

Start simply, such as standing on one leg, or standing heel to toe.  You can add eyes closed, or maybe a pillow underfoot.  You can move the leg that is off the floor around, turn your trunk or throw a ball.  It may be tricky at first, but persistence pays off.

How can you tell if your balance is improving? The easiest way is to count how many seconds you can stand on one leg.  Then as this becomes easy, how long can you stand on one leg in more challenging positions such as eyes closed.   

In our Studio 194 Pilates classes we always include at least one element of balance and the class members comment on how much they enjoy the challenge and how they notice their balance improving in daily life.  The key is to do it regularly and do it safely.  You may never want to ride on a stand up paddle board but I have seen plenty 60 plus year olds on the water in my regular paddles so I know it can be done!!  Good balance is animportant life skill, and should be part of everyone’s daily routine.

Thanks Megan for this great blog. And everyone always remember to challenge yourself to do more, move more and not say I can’t I’m too old.

#yourstorymatters #ABTA

  

Amy Dawes and her daughter

 

This week has seen the inaugural Birth Trauma Awareness Week and big congrats to Amy Dawes and the crew at www.birthtrauma.org.au for their amazing public awareness campaign which has snared interest from The Project and  the ABC National News and a fantastic article from feminist and writer Clementine Ford.

Now I have worked (begged, crawled, been on bended knees) for 27 years as a representative of the Continence Foundation of Australia, the peak body for continence promotion in Australia, to try to spread the word about continence promotion (urinary and faecal) and preventative strategies for prolapse management and I have massively struggled to engage mainstream media. And yet this week has been a HUGE success for ABTA for highlighting birth trauma, its link to Post Traumatic Stress Disorder and the toll it takes on a woman’s health and family relationships.

As a result of this exposure, many women- who for years and years have just shut up and ‘grinned and beared it‘- have realised THEY too have suffered with horrific pelvic floor dysfunction, a life threatening birth event for themselves or their baby and a birth which went nothing like the birth plan and that possibly they have suffered PTSD which has significantly affected their life.

ABTA or the Australasian Birth Trauma Association was established in 2016 by Amy Dawes and Professor Peter Dietz and others (including Liz Skinner, a PHD student who has done research into the psychological impact of a traumatic birth) to assist women through their own journey after a traumatic birth by providing them with the information, resources and support required to manage their symptoms while raising a family, participating in the workforce and being active in their community.

Key activities of ABTA include:

  • Raising awareness of physical and psychological birth trauma and the significant consequences for the woman and her family
  • Working with obstetricians, physiotherapists, mental health experts, midwives and urogynaecologists to prevent or address these injuries more effectively
  • Supporting affected women and their families
ABTA define birth trauma:
  • As a physically damaging birth processes which then results in life-changing psychological and social difficulties.
  • Psychological problems arising from the circumstances of the delivery (e.g. “wrong” location; pre-term; support people not present).
  • Psychological problems arising from the process (e.g. labour too quick, prolonged, inadequate pain relief; feeling of loss of control; emergency caesarean section; concerns about survival of baby or self)
  • An ‘uneventful’ or satisfactory delivery from the professional point of view (mother and baby well; no physical complications), but traumatising for the woman as she feels unsupported or even misunderstood by health professionals. (1)
Over the years since talk of traumatic deliveries and the health consequences of these deliveries on the mother have arisen- there has been mutterings and ‘out loud’ comments about whether this is something that women should just get on with life and not worry about it. But a long time ago and I can’t remember who said this  – Amy may and if she reminds me I will attribute this- someone likened the traumatic birth to a scenario when a plane gets hijacked on the way to Paris – but 27 hours later the hijacker was successfully apprehended and the plane landed safely with no one on board dying. NO ONE would say- you got to Paris and you’re alive – get on with living, without acknowledging that the process would have been harrowing, the stuff of nightmares and for some passengers they may go on to suffer PTSD and need de-briefing and serious counselling.
For some women, this is what they go through when they have a traumatic delivery. They are handed the baby and everyone sighs with relief and that is sometimes it! So many women who have found the ABTA Facebook group (you will have to be on Facebook to go to this link) have been relieved to find a space where they can recount their story fearlessly and know that the women in this group will ‘get it’.
The question is – how much information is a woman entitled to know about the pros and cons of all the birth processes? Is it scare-mongering to inform women about the birth process by telling them what can go on in a delivery? I used to take Childbirth Education classes (a hundred years ago) and when I taught about prolapse or urinary incontinence or faecal urgency in those classes, there were those who said: “Don’t tell the ladies about that stuff- it’ll put them off having a vaginal delivery”. And I didn’t even know about levator avulsion then!! (no one did except for a doctor in the US in 1938 who described levator avulsion in a medical text-book and it was never discussed again until many years later in early 2000’s by Prof Peter Dietz in Australia and Prof John DeLancey in the US).

I wrote an extensive blog on the ‘birth informed-consent controversy’a few months ago and I think the conversation is growing especially as research by a team led by Eric Jelovsek (with Prof Don Wilson amongst others) has developed UR-CHOICE, a scoring system to predict the risk of future pelvic floor dysfunction based on research looking at major risk factors. (2) This research has followed up women at 12 years and 20 years after delivery and this scoring system together with the mother’s own preference, may help with counselling women regarding pelvic floor dysfunction prevention.UR-CHOICE stands for:

U – Urinary incontinence before pregnancy.

R – Race (ethnicity).

C – Child. Bearing first child started at what age?

H – Height. Mother’s height (if < 160cm).

O – Overweight. Weight of mother, Body Mass Index.

I – Inheritance. Family history of PFD (mother and sister).

CChildren. Number of children desired.*

E –  Estimated foetal weight (baby weighing greater than 4kg). 

*If caesarean deliveries are indicated this is important due to an increased risk of placenta praevia and accreta with increased number of caesarean deliveries. (2)

I do believe informed consent for childbirth will be routine before I have retired.

I do believe women will understand more than ever before about what they may face with childbirth – and this is a good thing.

I do believe it is a woman’s right to be well informed about the potential pelvic floor issues that can occur with childbirth.

So congrats to ABTA for getting such fabulous exposure on the issue of traumatic birth and here’s hoping many women will be supported and assisted by discovering ABTA if they suffer a traumatic birth.
Now today is a very special day as 33 years ago I ventured into motherhood (one of the best things I’ve done in my life) and had my first-born (happy birthday darling). It definitely was very memorable (I can recount every detail still 33 years later) but thankfully, it was not a traumatic birth.
And despite me definitely having my share of pelvic floor dysfunction, neither were the next two births. Having relatively good vaginal births still changes you – I can’t imagine how having a traumatic birth would have left me. I surprisingly knew very little going into my first pregnancy and certainly didn’t contemplate the major pelvic floor dysfunction I have as an outcome. But luckily I fell into women’s health physio soon after my third baby and was able to be fanatical about pelvic floor strengthening, bracing (the knack), correct bladder and bowel emptying and all the other strategies that we teach women after childbirth and cope reasonably well on a daily basis.
But knowing what I know now, I definitely don’t believe that ‘ignorance is bliss’ is a good motto. Knowledge is empowering and a basic right for all women.
Sue with her first-born daughter 7/7/1985
(1) Some information for this blog has come directly from the ABTA website http://www.birthtrauma.org.au/about-us/
(2) Jelvsek J Eric et al (2018): Predicting risk of pelvic floor 12 and 20 years after delivery American Journal of Obstetrics and Gynaecology, Vol 218, Issue2, 222.e1 -222.e19

World Continence Awareness Week: Incontinence is No Laughing Matter Blog 3

Healthcare in the Transgender Community

Katherine McGregor

Recently I attended an excellent talk put on by the Australian Physiotherapy Association’s Women’s, Men’s and Pelvic Health Group by Jess Hopkins on Healthcare in the Transgender Community. I had decided I would write about this wonderful talk as Blog Number 3 in the series this week on World Continence Awareness Week: Incontinence is No Laughing Matter, as urinary incontinence is just one of the difficulties associated with the reassignment surgery. But to be honest, I would rather highlight some really big issues that we should contemplate before Trans people ever get to the reassignment surgery and the incontinence complication.

As I sat on the lounge to write this blog, one of my favourite ABC shows – Julia Zemiro’s Home Delivery – came on. And who should be on but one of Australia’s most well-known Trans women – Katherine McGregor. I encourage you to watch this episode as it reinforces the dreadful struggle that so many Trans people have to deal with through their lives and the pain they endure due to the loss of relationships, family, friends and for some careers. It is so brave of Katherine to become such a public face of this community.

This topic is so important for all health professionals and really also the general public to be well-educated about – not just for treatment of pelvic health issues for those undergoing gender reassignment but also about understanding the myriad of social and emotional issues faced by this group in our society, in our country of so-called accepting Australia. I also went to the talk hoping to learn about using appropriate language when working with Trans clients.

What is Trans?

The DSM 5 Definition of Gender Dysphoria (in adolescents or adults) is when there is a marked incongruence between one’s experienced/expressed gender and assigned gender of at least 6 months duration. This can occur with Male to Female, Female to Male and Non-binary.

Sexual orientation is an enduring pattern of romantic or sexual attraction (or a combination of these) to persons of the opposite sex or gender, the same sex or gender or to more than one gender.

Gender identity is one’s personal experience of one’s own gender. Gender identity can correlate with assigned sex at birth or can differ from it completely.

Jess works in a volunteer capacity for the Australasian Transgender Support Association of Queensland (ATSAQ) to help educate different groups about what it means to be transgender. ATSAQ was formed in 1990 to help advise and assist the transgender community in Queensland. It is run by transgenders for transgenders and provides emotional and moral support for people with Gender Dysphoria (formally known as Gender Identity Disorder) their families and friends.

Jess outlined the considerable social issues and fears facing Trans people. These include school and workplace bullying; substandard health care- incorrect diagnosis or refusal of care; fear of being outed and domestic violence repercussions; fear of being turned away and being stared at; lack of openness or information about services and invasive and inappropriate questions. The Now Australia mission is to clean up toxic workplaces. Melissa Griffiths who wrote the linked article in the Guardian is a steering committee member of Now Australia. After terrible personal experiences herself in the workplace she is adamant that workplaces free from bullying, intimidation and sexual harassment must be created. The Now Australia action creates an opportunity to do this, as well as support those who are suffering in silence.

“Our message will be heard across the land. And we will not stop until sexual harassment ends, once and for all.”

There are significant risk factors for the Trans community:

  • Self destructive thoughts
  • Family breakdown
  • Substance abuse
  • Lack of general education
  • Media stereotypes
  • Isolation
  • Unsupportive school environment

Some common outcomes for Trans people:

  • 1 in 4 transgender youth attempt suicide
  • 45% have thought about suicide
  • Low self esteem
  • Self harm
  • repressing feeling leading to chronic depression

I found these statistics terrifying. Especially when you hear that in Queensland 2500 transgender children are in the school system.

When Jess so articulately presented that night it made me wonder: Why do people choose to bully and disrespect Trans people when they can’t change what they are feeling and when they have no control about the body they are given at birth- about the mismatch that has occurred? 

You will see next time in Part 2 of this blog that it is not cheap to have the surgery to undergo gender reassignment and the upheaval to their lives is hugely challenging – not something anyone would choose to do on a whim.

I feel so sad when contemplating the hell some children must suffer due to ignorance and a lack of understanding.

If anything you have read has triggered in any way please seek help:

Brisbane

Holdworth House Fortitude Valley.  Biala Sexual Health Clinic

Lifeline: 13 11 14

Part 2 will follow on health related issues

World Continence Awareness Week: Incontinence is no Laughing Matter Blog 2

Bladder Control and Public Transport 

This is a rather personal blog on the topic that Incontinence is no Laughing Matter.

And I certainly wasn’t laughing by the time I got off the train in Brighton and joined the queue with about 50 other women back in August 2017 when excruciatingly waiting my turn for the loo.

But I jump ahead and you need the detail to understand my plight.

Last August we headed to London to visit my daughter and her partner. Everywhere we went, we travelled by tube or the fantastic red London buses because one just doesn’t drive in London unless you are very important.

Very important person driving in London

How the rest of us get around London

Angel tube has the longest escalator in London (don’t be scared of heights)

It’s a tight fit in the tube

What is a fact is that Londoners must be very fit because you walk and walk and walk in London to get around. But with all that walking and no driving (door-to-door or toilet-to-toilet) comes the dilemma of accessing toilets. And I soon became aware that you cannot rely on the tubes and train stations to have working toilets.

Too bad if you’re busting when you see this sign at the train station

(This was all to common unfortunately) 

Now I am always naturally interested in toilets because of the work I do. But this story, as I said, is personal and it came close to getting ugly TWICE on that trip last year. In the quest of #breakingthesilence around incontinence (or the almost disastrous incontinence) I am going to tell you of my two near misses.

This day we suddenly decided to have a day trip to Brighton to walk the Seven Sisters. We were catching it from the big, beautiful, brand-spanking new London Bridge station. On the way I had succumbed to a normal coffee rather than my usual decaf but despite cutting it a bit fine for catching the train, I decided it would be safer to find a loo before hopping on that train trip to Brighton.

Brand new enormous London Bridge Train station and NO OPEN TOILETS at all…anywhere???

Ok I’ll use the ones on the train….

No toilets on the train from London to Brighton. Really wow.

No probs, I’ll just do what I teach every day at work. Use my urge control strategies- there was lots of toe curling, glut squeezing, belly breathing, leg crossing, pelvic floor activation, low tummy on, pelvic floor relaxation, tummy off, distraction, contacting friends via messenger for super distraction, then for solace and advice about what to do in the event I lost a full bladder on a train to Brighton in front of my daughter and her partner.

And then hallelujah we pulled into Brighton.

50% of the train (all females) charged the train exits and ran for the loos at the end of the station, (scenes reminiscent of the opening of the doors at the DJs sale on Boxing Day). The queue was enormous and extremely slow moving. When I got to the entrance I could see why.

For those who cannot see the print it says “Cubicle out of use”

Of the 6 toilets in there 4 were out of action. And there was a lady controlling the masses, directing all us desperate girls into the one disabled and two working toilets and banging on the doors if there was anyone too slow.

I can still to this day palpably FEEL the relief of making it that day.

The second one involved two Spritzers (I think my children called it pre-loading as 18 year olds going clubbing), an Uber and a typical London traffic jam. You don’t have to hear the details, only to say that I got lucky and made it for a second time …… just.

So the point of the story?

Urge control strategies work a treat.

Belly breathing is simply amazing.

Never drink alcohol and use public transport or Ubers.

Never, never rely on public toilets being operational in London.

Near misses are not a laughing matter either.

 

 

World Continence Awareness Week: Incontinence is no laughing matter. Blog 1

Here it is again- June and we’re heading into yet another World Continence Awareness Week 18th-24th June. (Seriously are we on ‘life double time’ these days? Next thing it’ll soon be Christmas again!)

The theme for this year is Incontinence is No Laughing Matter and one of our incredibly articulate patients has penned a great piece for us to start the ball rolling for this years World CAW.

Painful sex is no laughing matter and leaking urine at 21 is no laughing matter.

This patient – we’ll call her Vivienne – was passionate about writing a blog about her issues for me because as a young woman, the impact of her dyspareunia (painful sex) and urinary leakage was devastating. In the blog she is imploring young women to seek help early – don’t be embarrassed, don’t think it’s only you, don’t be ashamed, don’t be scared. Pelvic health physios or as they used to be known- Continence and Women’s Health physios are empathetic and good listeners, are reassuring and confident that your problem CAN be solved, that order can be restored (ie sex won’t hurt, leakage can be fixed) and the fun of life will resume.

Thanks so much Vivienne for your great blog.

Painful sex and incontinence as a young person – how to get help and then get on with life!

 

“It’s OK, it was your first time – they all say it hurts.” – Me, at 21 years old.

“Don’t stress – you’d never even used a tampon before so the second time was meant to hurt.” Me, at 21 years old.

Time and time after that, 21-year-old me kept putting it down to “getting used to it” but the truth of the matter is I never quite “got used to it.”

The nights I’d cry either due to the shooting pain, or another night of rejecting my partner, soon became unbearable. To top this off, the leakage began. Since I was young I’d had an extensive history of bladder issues, even needing surgery at four years old. Laughing, running and stress made me leak. How, at 21 years old, was my body betraying me like this? What did I do wrong?

The negative thoughts were rife – “Will my boyfriend leave me?” “Will he cheat on me?” “Do my friends think I’m weird when I tell them I can’t swim when I have my period because I can’t use tampons?”

None of the above ever came true, but it was these intrusive thoughts that made my life hell. Whoever thought this “sex” thing would be so damn hard (no pun intended)?

That’s when I decided to take action. I was too young to deal with these issues on my own, so I booked into see a fantastic Women’s Health Physio. She covered everything with me – dilator use to relax my muscles, correct voiding techniques, cutting back caffeine (oh, the withdrawal headaches that came with this were awful) and most of all, changing my mindset towards pain.

At first, I felt as though I was being told it was all in my head, but it was so much more than that. It was about relaxing my mind and muscles, removing myself from my intrusive thoughts and breathing (just to name a few things).

I won’t lie – the next few months were very difficult. Daily dilator use, remembering to breathe, remembering not to cringe and clench up and remembering to put aside my daily worries. It was tough, but completely worth it.

About a year later, I had a bit of a flare-up which set me back and made me feel hopeless. With the guidance of my physio, I was back on track and on the journey to being pain-free and in control of my bladder.

Thanks to conservative management strategies, a patient boyfriend and overall perseverance, I can proudly say I’m much better off today and am virtually pain-free. I’ve certainly come a long way from the 21-year-old who’d cry herself to sleep thinking “why me?”.

To anyone out there “just putting up with it” – please do me a favour and don’t just put up with it. Speak up and seek help – not all hope is lost, there’s plenty of people out there who understand your struggle. It’s a long journey to being pain-free but be assured it’s one of the best journeys you’ll ever take.

Thank you so much Vivienne for this great blog. If you would like to read more blogs about treatment strategies for pain management, go to this link: Sue Croft Blog – All Pain Resources in One Area. 

If you need help and don’t know where to turn, the Continence Foundation of Australia have a register of pelvic health physios who can help you. Give them a ring on 1800 330 066 and if you live in Brisbane and need help give our secretaries and ring on 38489601 and book an appointment with Jane, Martine, Megan, Alex or myself and one day, sooner than you think, you might be writing a blog for me too!

Let’s turn this pain thing on it’s head

(Regents Park, September 2018)

Dementia Prevention: Part Two

As always when I go to these fabulous courses, like the Norman Doidge The Power of Thought: Updates in Brain Plasticity, the hurly-burly of work and other commitments prevents me from doing as much writing as I would like about the nuggets or pearls of information I am able to glean from attending the course. But luckily I saw a patient recently who liked my blog on The Green Goblin: Dementia Prevention Part 1 and told me her little pearl of dementia prevention and as she kindly wrote a paragraph for me on it, I decided to do a quick post on it and create an on-going series of ideas and research on Dementia Prevention (and Management). I am definitely in for some more uni study, as recommended by Barbara, when I finally decide to slow down from (super-charged) full-time work and while I would love to do some research in pelvic floor matters, studying something completely removed from bladders and bowels does hold some appeal.

Here is Barbara’s blog:

In her blog, Sue Croft writes about the importance of reducing our risk of dementia. She lists reducing social isolation, exercising, sleeping well and reducing inflammation in the body as some of the ways to reduce our risk of dementia

Another strategy is to ‘study all your life’ or be a life-long learner, so I’ll share my brain-training strategy.

My mother suffered from Parkinson’s so I’ve seen how damage to the brain can lead to physical difficulties. I’m 64 years of age and several years ago after retiring from full-time work, I enrolled in a Diploma in Arts at the University of Queensland. I study one subject each semester and I’ve completed a minor in Art History and now I’m completing a minor in Ancient History. Each subject costs $800 to study. One of the reasons I’m studying, is that when I retired, I found myself thinking about trivial matters and worrying about them unnecessarily. Study is a bit like meditation; you have to really focus on it to gain any benefits.

The lectures and tutorials are stimulating and I enjoy going out to university once a week and spending time in the environment at UQ. I complete all the required assessment tasks and this helps me understand the concepts in some depth. I don’t mind writing essays but studying for exams can be challenging. I’ve read that, as we age, some of us find numbers hard to remember, so I use visual strategies and mnemonics to remember dates, names and the sequence of historical events. This helps me to remember details so I can write essays in exams.

Once I’ve finished my Diploma I’ll be looking for another way to keep learning; maybe learn to play a musical instrument, take an art class or learn a new language. I’m determined to ‘use it or lose it’.

Barbara

Thanks Barbara for the blog and a couple of weekends ago I decided to go for a good long walk around my old (and I mean really old) stamping ground- The University of Qld or UQ –  and nothing has changed in the Great Court where this photo is taken. There are plenty of fabulous new buildings dotted all over the campus but the sandstone buildings enclosing the grassed areas is just the same as it was 44 years ago when I first walked there and stood (probably shaking in my boots) in the year of the ’74 floods to register for my physio degree.

Thank you Barbara for the inspiration and I look forward to registering for my next Uni degree/diploma.

Profile on Grace Carey and a new Pessary

At the beginning of this year I got to trial some new pessaries. As you know I am a bit of a fan of pessaries as a conservative approach to managing pelvic organ prolapse. I have written many blogs on them – if you go to the top panel there is a prolapse and pessary section where all the blogs are categorized. The Gynaecologic (pictured above) has been produced by Grace Carey and her father Dr Marcus Carey. It is made of high quality ultra soft silicone and does feel much more flimsy than the pessaries we are used to using. I tried the pessary on quite a few patients and did not succeed in making it work. But after I heard that Professor Judith Goh and Dr Hannah Krause successfully fitted them to patients in Uganda who then proceeded to cancel their surgery, I was determined to make them work. Since then we have successfully made about seven work and will continue to try them as an option. I do feel the pessary is definitely easier to fit when the tag is cut off. The following blog has been provided by Grace Carey who has helped to design this new style of pessary called a Gynaecologic Pessary. Here is her blog giving some background to their design.

After working as the product manager for an Australian-American medical device company focused on gynaecological oncology, I took a year off to undertake the Master of Public Health degree at the University of Sydney. During this time, I worked closely with urogynaecologists and started a company to commercialise a pessary for surgical use. The S-POP (Surgical Pelvic Organ Pessary) was our first product and is fitted at the completion of prolapse surgery to support and augment the healing tissues. The S-POP is removed four weeks after surgery.

Although the theory of a pessary is sound and thousands of years old, we felt that vaginal pessaries that are currently available haven’t evolved much over the past 300 years. Even though pessaries are widely used there is remarkably little research in this field. While new shapes and styles of pessaries have been introduced, many are without any obvious scientific or research basis and some designs are more likely to be introduced out of frustration with what is already on the market. When designing a new pessary, we worked from an anatomical perspective and came up with a new design based on vaginal dimensions that were generated by studying vaginal casts from 60 women undergoing prolapse surgery. We also wanted to make self-care a priority after hearing about patients who struggled to remove and insert pessaries by themselves or fashioned their own “pessary alterations”  (like using dental floss) to make removal easier. The end result is an irregular hexagon shape that minimises pressure at the apex of the vagina (where ulceration and granulation are most likely to occur) and with a finger pull to facilitate removal, which can be trimmed or cut away entirely if desired by the patient. We also spent a lot of time looking into materials and finishes to try and reduce biofilm build up.

Professor Judith Goh spoke to me about making some pessaries available for some of her overseas work in developing settings. Recently, I was fortunate to spend time with Judith and her colleagues in Kasese, Uganda. As part of their two-week fistula and prolapse camp, they undertook research into the pessaries by fitting every prolapse surgery candidate with a pessary during their initial screening consultation. The research questions looked at, among other metrics, size, comfort, retention and ease of self-removal and reinsertion. Somewhat surprisingly, we observed over 30% of women scheduled for prolapse surgery chose to go home with a pessary instead. This was very positive as pessaries cost about 1% of an operation and the fitting and management of pessaries is much easier to teach to health professionals so more women can have access to prolapse management, either in the interim before surgery is available or as a long term treatment option.

I never thought that I would be running a pessary company but after seeing the impact of them first hand in Uganda, as well as the growing demographic of women seeking alternative options in Australia, my work is cut out for me.

Thanks Grace for the introduction to your new pessaries. Here is the link to the website to purchase the pessaries (for health professionals only).  I look forward to continuing to trial them with patients and love having yet another type of pessary in my pessary ‘toolbox’.

Dementia – the Green Goblin

This week’s blog is a sad one. It’s talking about a problem which is likely to touch all our lives in some way. We will all know a family who has had to deal with the dementia diagnosis or will be right now in the thick of the dementia disruptor, with all the sadness and confusion that it not only brings to the sufferer, but also to the family and friends of the person with this awful disease. The figures for dementia are on the rise and the burden to the families and surrounding society can be huge.

My OT friend Anne, who gives me all the funny incontinence cards, also provides me with some amazing books to read and one which is very moving and poignant is called Green Vanilla Tea by Marie Williams. This book is an account of the personal journey of Marie Williams (a social worker by profession) whose husband had a diagnosis of dementia. It is particularly tragic because he was very young when he was diagnosed. They had two teenage children and the impact on all their lives is laid bare in the book.

Marie writes about dementia, calling it the Green Goblin, and her story, while tragic, gives an insight into the things we take so much for granted – things like language and communication, which slowly faded as her husband descended further into the grip of Alzheimers. Marie says:

The more I travelled in the company of this Green Goblin (talking about Alzheimers) the more I noticed the politics and power embedded in the ability to speak the way the various conversations shape our experiences, and the marginalisation of knowledge that is wordless. Oliver Sacks says our natural speech does not consist of words alone. Instead it consists of utterance- an uttering-forth of one’s whole meaning with one’s whole being- the understanding of which involves infinitely more than just word recognition. He goes onto say that language is immersed in tone and embedded in an expressiveness that transcends the verbal. He says it is deep, complex and subtle but perfectly preserved in people with aphasia (the total inability to speak). Not only is it preserved in people with aphasia he says it is ‘preternaturally enhanced’. (P135)

Today I have attended the first day of a 2 day workshop with Norman Doidge- the author of two brilliant books, which I would recommend to everyone to read. The Brain that Changes Itself and The Brain’s Way of Healing are brilliant reading about the plasticity of the brain and the ability of the brain to recover and compensate for significant losses and damage.

The final session today was on the very latest dementia research and best of all there is plenty of evidence stacking up on the preventative strategies that can be employed to prevent dementia and even make some reversing changes in early dementia.

All of these strategies need to be undertaken FOREVER! There will be a regression if you stop doing them. Social isolation not only worsens the progress of dementia, but makes it difficult for the sufferer to follow through with many of the strategies listed below. I am listing them early in this blog (below) so you can get started on a lifetime of dementia prevention, but will expand on all the research at a later time adding the exciting and compelling research that is going on in the dementia world to this blog at a later date.

In a nutshell what can you do to decrease the risk of dementia?

  • Correct cellular health of neurons and glia (address deficiencies Vit B12; treat infections; address teeth bacteria (floss teeth daily- teeth bacteria cross the blood brain barrier); Tested for heavy metals -lead, mercury, arsenic; pesticides; medications, drug abuse; food sensitivities- dairy, gluten (Good book Joe Bazzano The Toxin Solution)
  • Exercise – walk 3 kms a day 5 days a week (or cycle 16 kms, dance or other vigorous exercise)
  • Eat healthy -Mediteranean diet, 4 serves of fruit and vegetables, light on the dirty dozen ; eat organic watch hormones and pesticides.
  • Body mass index between 18-25%
  • Don’t smoke
  • Don’t drink too much(one glass wine per day
  • Sleep (good quality, enough)- a sleep study will tell you if you have sleep apnoea. Good sleep helps with elimination of waste build up in the brain.
  • DON’T HIT YOUR HEAD -avoid sports that cause minor repeated head injuries
  • Brain exercisesBrainHQ the most tested brain training by far; learn a new language; do something you are bad at- don’t keep doing things you are good at.
  • Control blood sugars
  • Importance of hormones (watch removal of hormone producing organ-ovary, thyroid
  • Eliminate foods that cause inflammation
  • Eliminate toxins
  • Be with people -beware social isolation. Loneliness magnified dementia and increased in those not married
  • Study all your life
  • Treat past traumas to decrease stress load

I will add the research which went across 30 years in two studies and other research by Dr Dale Bredesen at a later date, so I can get this blog out. Watch this space for the evidence to back up the above suggestions.

To finish though I want to include another quote from Marie Williams beautiful book for those people who have faced the difficult decision to place loved ones in care.

‘They showed me around and poured endless cups of tea but offered no pity. I was so relieved. Pity can be very isolating; there is nowhere to go from pity. One remains locked up in the sad story, alone. Pity has a way of creating and preserving hierarchical relationships between people that by their very structure assume the positions and abilities of the pitied are ‘less than’. It has nothing of the warmth and reciprocal human connection that comes with compassion. I told our story. The plight of a young family touched them and to my great relief they did not seem to think I was a bad person for considering placement. They held our story with a balance of authentic empathy and professional competence and they were kind- a tangible kindness that changes things and stays with you. (P158)’

And finally a statement with which I resonate with my blog writing. Marie’s great act of writing her story, may inspire others to agitate for more appropriate distribution of funds for research and programmes like the ones set out above. These interventions cause no harm and have research conducted over 30 years-so maybe instead of spending humungous amounts of money on more new drug trials, money could be allocated for centres of excellence with strategies for those with dementia.

 In “Picturing Human Right” a book by David Lloyd – he said stories, when voiced, become a political act. It doesn’t change the world, but storytelling changes people and people change the world. Telling this story is as much a political act as it is a story of love and hope. (P 236)

Further information can be gained from a programme on ABC 24 Sunday 10/12/17.

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