A free service staffed by nurse continence specialists who can provide
information, referrals and resources 8am - 8pm AEST weekdays.
The Foundation, established in 1989, is a not-for-profit organisation.
Published by the Continence Foundation of Australia
ISSN 1836-8107. Online version ISSN 1836-8115.
The Bridge Magazine is published quarterly by the Continence Foundation of Australia. It is supported by the Australian Department of Health and Aged Care under the National Continence Program.
The information in the Bridge Magazine is for general guidance only and does not replace the expert and individual advice of a doctor, continence nurse or continence physiotherapist. The Bridge Magazine cannot be reprinted, copied or distributed unless permission is obtained from the Continence Foundation of Australia.
Advertising
The Continence Foundation of Australia appreciates the support of advertisers in publishing the Bridge Magazine. Advertising conforms to the standards required by the Continence Foundation of Australia, but endorsement is in no way implied by the publishing of said material.
References
For a list of references for any articles appearing in the Bridge Magazine, please email bridge@continence.org.au
Become a member of the Continence Foundation of Australia and receive many benefits including discounted registration to the annual National Conference on Incontinence, free publications and timely information about events and education courses.
Email membership@continence.org.au or Phone 03 8692 8400.
The Continence Foundation of Australia greatly values the stories people share of living with or caring for someone with incontinence. Reading the experience and advice of others can make a huge difference to someone in a similar situation. If you would like to share your story with us, please register on our website. Go to www.continence.org.au/life-incontinence/personal-stories#sharestory
Unless otherwise indicated, the photographs used in the Bridge Magazine are those of models and bear no resemblance to the story.
Click here to subscribe to our mailing list and receive each edition of the Bridge Magazine in your inbox.
If you do not have access to an email address, call us and we can send hard copies of the Bridge Magazine on a case-by-case basis.
NOTE FROM THE CEO
Welcome to the winter edition of the Bridge Magazine where we celebrate and acknowledge World Continence Week 2024, a global initiative intended to raise awareness of bladder and bowel control issues, chronic pelvic pain and other conditions which impact greatly on the lives of patients, families and carers. This year, the Continence Foundation of Australia acknowledges World Continence Week through the theme of ‘Let’s Talk.’
This is my first issue of the Bridge Magazine since being appointed the CEO of the Continence Foundation of Australia, and it is a privilege to be able to welcome stories from experts and those who have lived experiences with incontinence.
For many, health-related issues are treated privately and for many others, health-related issues might not even be treated at all. Of course, the choice to openly discuss matters of health is at the discretion of each individual but through the stories in our magazine, we find that the more we communicate about incontinence, the more we can try to ‘normalise’ conversation and clear negative perceptions.
In this issue, we speak with Becky Khan, an Occupational Therapist who discusses how parents can better navigate through the clinical process for children with disability who have incontinence. We also speak with GP, Dr Dinara Markhabullina who shares medical insights into the biological underpinnings and functioning of incontinence. A stroke survivor shares her personal lived experience story, and another shares her experience through a cultural lens exploring how our culturally and linguistically diverse communities can successfully engage with clinicians when they need support.
We are also pleased to announce the Continence Foundation of Australia’s Carer of The Year for 2024, Maria Erceg. Maria’s story is inspiring and we congratulate her on being the recipient of this year’s award.
I hope you enjoy this edition of the Bridge Magazine and feel encouraged to learn more about incontinence, raise awareness and keep in touch with those who experience incontinence.
Gian Sberna, CEO, Continence
Occupational Therapist Mrs Rebecca Khan shares her insights to set your
ABOUT THE FOUNDATION
The Continence Foundation of Australia is the national peak body promoting bladder and bowel control health. Our goal is to eliminate the stigma and restrictions of all aspects of incontinence through research, advocacy, consumer education and professional development.
This includes providing high quality continence resources, education and services. The Foundation advocates for policies and programs that consider the needs of people affected by incontinence and supports research and professional education in incontinence.
Continence is the ability to control your bladder and bowel. Incontinence is the involuntary loss of urine and faeces. In many cases incontinence can be prevented, better managed and even cured.
Who we support: We support people of every age, gender and cultural background. Incontinence affects women, men and children of all ages, physical abilities and social and cultural backgrounds.
How we can help: We have resources for individuals and for health professionals.
If you need support for yourself or a family member, the Continence Foundation of Australia’s National Continence Helpline 1800 33 00 66 is staffed by nurse continence specialists who offer free and confidential information, advice and support. It operates 8am to 8pm AEST, Monday to Friday
Our website includes a wide range of helpful information, self-help guides and tips on getting support. You can also download or order paper copies of resources.
Health Promotion Initiatives: We lead initiatives aimed at improving both public health and community accessibility, such as Pelvic Floor First, promoting pelvic floor exercises and BINS4Blokes, encouraging the installation of incontinence product disposal bins in male toilets.
INTRODUCTION TO INCONTINENCE: INFOGRAPHIC FROM SURVEY RESULTS
Each year, the Continence Foundation of Australia conducts a National Consumer Survey to gain insights into the community’s perceptions and experiences of incontinence, the quality of life and wellbeing of people who experience it, as well as their carers.
Approximately 2,000 people participated in the latest survey, broadly representing the Australian population in terms of age, gender and geography.
PREVALENCE
39% of Australians currently have or had incontinence 24.2% are females 14.8% are males &
IMPACT OF INCONTINENCE
23% experience financial impact 30% say it affects their employment status
40% say it affects their mental health and wellbeing
AWARENESS
42% of people who previously or currently experience incontinence say that it causes them to be less confident to leave the house, a slight decrease from 49% in 2022
56% say it has affected their ability to work in the last three months
46% of people with incontinence are reluctant to discuss their condition with family and friends
Over 60% say they have become more aware of incontinence and accepting of people who have it
LET'S TALK
74% of people believe it is true that there is a lack of awareness about incontinence/ bladder and bowel health
40%
say that, over the past 12 months, their experience of incontinence has become easier and 15% say it has become harder
67% of those with incontinence have discussed the condition with a health professional, indicating that help-seeking behaviour has increased 54% who have or had experienced incontinence have discussed it with family/friends in mostly positive terms
The National Continence Helpline (1800 33 00 66) is a free telephone service that offers confidential information, advice and support to those impacted by incontinence. If you need further support with incontinence, please call the helpline during operating hours 8am-8pm (AEST) Monday to Friday excluding national public holidays.
WORLD CONTINENCE WEEK 2024
Running from June 17-23, World Continence Week (WCW) is an annual initiative devised and managed by the World Federation of Incontinence and Pelvic Problems (WFIPP), with the endorsement and support of the International Continence Society (ICS), European Association of Urology (EAU) and the Ibero-American Society of Neurourology and Urogynaecology (SINUG).
It is a global initiative intended to raise awareness of bladder and bowel control issues, chronic pelvic pain and other debilitating conditions which impact greatly on the lives of patients, families and carers.
We spoke with one of WFIPP’s founding members, Mary Lynne Van Poelgeest-Pomfret about WFIPP, World Continence Week and continence from a global perspective.
HOW HAS WORLD CONTINENCE WEEK GROWN SINCE ITS INCEPTION?
World Continence Week is a key awareness-raising campaign which has been growing from strength to strength ever since WFIPP took it over as a key activity in our annual activities.
THERE CAN BE A LOT OF STIGMA ASSOCIATED WITH INCONTINENCE. AS A SOCIETY, HOW CAN WE START CHANGING THIS? WHAT KINDS OF PUBLIC DEBATES OR DIALOGUES SHOULD WE START HAVING?
As a society we need to address all the problems involving any form of urinary or faecal incontinence (leakage) in a very factual manner. We need accurate data and statistics. We need to stress the impact and burden that these conditions entail for patients and their families. We must strive to take incontinence out of the taboo sphere and to do so involves making a lot of noise, awareness-raising campaigns and work from the premise of a multidisciplinary approach patient advocates, clinicians, allied health professionals, researchers and official institutions in terms of influencing policy makers.
The figures speak for themselves: 1 in 3 women and 1 in 10 men suffer from some form of incontinence and it is not just an issue for the elderly.
Quite the contrary, young women especially during exercising, after childbirth, menopause and for men, as a consequence of prostate cancer, or other interventions, either after a radical prostatectomy or radiation therapy. In the case of men, these issues have only recently started to be addressed. The burden of incontinence is massive. And we need to address it now.
#WCW2024 #continencematters #supportincontinence
Incontinence affects all sections of the population, not just the elderly, which is the commonly held belief. We have a duty to address all these questions and ultimately improve the quality of life of patients.”
Mary Lynne Van Poelgeest-Pomfret, Founding Member, WFIPP
GET TO KNOW THE NATIONAL CONTINENCE HELPLINE
The Continence Foundation of Australia’s National Continence Helpline (1800 33 00 66) is a free and confidential service staffed by Nurse Continence Specialists who can provide information, advice and support to anyone living in Australia who is impacted by incontinence.
WHAT IS THE NATIONAL CONTINENCE HELPLINE AND HOW DO YOU HELP CALLERS?
The National Continence Helpline commenced in September 1999 thanks to Australian Commonwealth Government funding via the Department of Health. The helpline is staffed by Nurse Continence Specialists who are Registered Nurses with qualifications and experience in continence assessment and management. They are supported by Customer Service Representatives who also help with access to the Foundation’s resources.
WHAT CAN PEOPLE EXPECT WHEN THEY CALL YOU?
It is important not to live with a bladder or bowel control issue and seek out help as you may be able to manage it better or even overcome it. No one should ever feel embarrassed or ashamed to talk about their incontinence. It’s ok to feel uncomfortable, but we are here to listen to you and help.”
Janie Thompson, National Continence Helpline Manager.
When you call the Helpline on 1800 33 00 66, you will speak with a Nurse Continence Specialist and receive free and confidential advice, information and support for yourself or someone you care for who is affected by incontinence. Health professionals are also welcome to call the Helpline for advice and information.
You can receive initial advice on how to manage your current bladder or bowel control issue, what steps you should take next and who you should contact for further support, if required.
MEET YOUR NURSE CONTINENCE SPECIALISTS
NATIONAL HELPLINE MANAGER: JANIE
I love being able to support people from all over Australia and help improve their lives.
JANINE
I love being able to help callers regarding their continence issue. Every day on the Helpline I take calls from consumers, carers and professionals and the calls vary greatly from toilet training issues right through the life span.
CLARE
Working on the Helpline gives me the pleasure of helping those with incontinence. It also provides opportunities to keep abreast of new developments within the field of continence.
DEE
I enjoy the diversity of callers and feel as though I can improve people’s continence issues.
ANNE
I enjoy working on the Helpline by helping our callers with their continence questions and being part of a great team.
MERRILL
The interactions with my callers makes every call varied and interesting.
ALANA
The huge personal satisfaction I gain from knowing I have provided support and guidance to our callers is the main reason why I enjoy my role so much on the Helpline.
A CASE STUDY OF A CALLER
Maria called the National Continence Helpline (1800 33 00 66) after a friend mentioned she could get funding to help pay for her continence pads. Maria is 79 years old and has type 2 diabetes, high blood pressure and osteoarthritis. She finds herself having to rush to the toilet and often leaks on the way.
Maria admits to getting up to go to the toilet three to four times a night. She wears two pull up pads during the day and a heavier one at night but finds the pads very expensive as she is on the age pension. She has discussed her bladder issues with her GP who prescribed a tablet called Oxybutynin which is used to treat the symptoms of an overactive bladder, but it made her mouth very dry, so she stopped taking the medication.
When Maria called the National Continence Helpline (1800 33 00 66), the Nurse Continence Specialists spent time with Maria discussing her bladder symptoms and the health conditions she has that
EMMA
I speak to people from all “walks of life” that may be calling for themselves or a family member. I know that we, on the Helpline, are able to give them the information or advice they need to address their concerns and move forward to receive the help they need and I find this extremely rewarding.
MARGARET
The people who call are so grateful for our expertise and experience in helping them sort through their problem.
might be contributing to them. She was encouraged to work on her diabetes management as she could have high blood sugar levels at times which might be contributing to her going to the toilet more often. High blood sugar levels can increase the amount of urine being produced.
The Nurse Continence Specialists also discussed with her the different strategies Maria could employ to help her hold on better when she feels the need to rush to the toilet, and to also help her reduce how often she gets up to go to the toilet at night.
It was important for the Nurse Continence Specialists to support Maria in finding funding options that she might be eligible for, such as various state and commonwealth government schemes, to help with the cost of continence pads. They mailed the Continence Aids Payment Scheme application form to Maria so she could look at beginning the application process.
“We shared information with her on her local continence service and encouraged her to have a continence assessment to help her better manage her bladder condition.”
Janie Thompson, National Continence Helpline Manager.
OCCUPATIONAL THERAPIST MRS REBECCA KHAN
SETTING YOUR CHILD UP FOR SUCCESS
Mrs Rebecca Khan has been working as an Occupational Therapist (OT) since 2001 having witnessed first-hand the significant need in the community for toileting skill development services. Mrs Khan was diagnosed with ulcerative colitis in 2003 and had a total proctocolectomy (a shortened gut) following surgical complications with post-op infections.
“That’s been a journey I’ve walked alongside my professional journey,” Mrs Khan said.
“It has really informed a whole lot of what I bring to my role with children who are incontinent and teaching them to listen to their body’s signals and build their toileting skills. My journey has helped me understand what they are going through and what might be helpful to them and their families.”
HOW CAN PARENTS INITIALLY MANAGE AN INCONTINENT CHILD?
Mrs Khan says you firstly need to manage the medical side and ensure their child has had a thorough continence assessment with a relevant health professional to try to establish why the incontinence is happening.
Then there is the ongoing daily interventions that need to take place to help a child continue to poo and wee regularly so they’re not getting worse while the health professional is working with them to improve their toileting skills. This could include regular laxatives or medications and this can become a daily struggle for the family.
“Additionally, there are daily functional strategies and goals that you might be working on, such as practicing on the toilet, getting the child to sit and helping clean.”
Mrs Rebecca Khan
It’s
simply because of that culturally and socially driven perception that it’s awkward or embarrassing that might make it hard for parents to ask for help but these are very important topics to bring
up with your doctor.”
Mrs Khan says if parents need support from an OT for their child to build toileting skills, they should book a long appointment with their GP and discuss their toileting concerns up front. Then, the GP can determine any medical tests or checks and referrals that need to take place before working on skill building with an OT.
“It’s simply because of that culturally and socially driven perception that it’s awkward or embarrassing that might make it hard for parents to ask for help. Shame often plays a role for parents too. But these are very important topics to bring up with your GP, and parents should feel comfortable to talk about these things to get good help for their child.”
Mrs Khan advises that some good conversational prompts to ask your doctor include:
Is my child’s bowel empty?
How can I know if my child is emptying their bowel or bladder when they go?
My child’s fear of going to the toilet seems persistent. Is there anything I can do about it?
My child has an [increased or decreased frequency] to pass urine and I’m worried they’re not emptying their bladder properly or are needing to go to the toilet too often.
WHAT DOES AN INITIAL CONSULTATION WITH AN OT LOOK LIKE?
Occupational Therapy uses ‘occupation’ or meaningful activity to help people achieve the specific tasks and skills they want to participate in each day. As kids grow, we help them learn activities like using the toilet, eating new foods, starting high school or getting a job. Often clients have never learned that target skill in the first place (common in childhood) or need to relearn it after an injury (rehabilitation).
During a session with an OT like Mrs Khan, a typical session will involve talking about some of the health, behavioural and routine changes that can be made.
“In Occupational Therapy we focus on daily routines because continence is all about participating in taking care of one’s own body functions. So, if we can connect toileting to normal self-care tasks like mealtimes, dressing and teeth cleaning, it can really help embed toileting daily,” Mrs Khan said.
“We also build confidence by highlighting skills the child already has, to take care of their body such as washing in the shower. If the child feels embarrassed and ashamed thinking that they can’t toilet effectively, we can demonstrate that they are good at doing things for themselves, now let’s apply that same idea into the toilet space.”
To best prepare for these sessions, it is worth having a think about what you have and haven’t tried before, what you have learned, and how much time you have in the coming weeks to work on this.
Mrs Khan suggests it is important that everyone is not highly stressed at the time and that families/caregivers have taken some steps to slow down the routine a little, so that everyone has a little more headspace to think clearly. Holidays often work well.
“It’s important to be aware that sometimes change is slow. There are a lot of things that we’re changing in the child’s daily routine and they need to be made slowly.”
WHAT SHOULD PARENTS AVOID WHEN TREATING THEIR CHILD’S INCONTINENCE?
“I say to parents whose children are taking a long time to learn, that our initial aim is independence and dignity. No matter how they use the toilet or a continence aid, if they empty and they hygienically change behind a closed toilet door, no one needs to know. They are functionally independent. Urgedirected toileting and removing continence aids can come later, if necessary, once the situation has calmed down.”
NEURODIVERGENCE AND TOILET TRAINING
One of the most important considerations is to avoid talking about the child’s incontinence in a way that makes the child feel as though they are the problem.
“Toileting is such a personal, private topic and when it goes wrong, it can easily feel as though there’s something wrong with the child. They quickly pick up negative ideas that they are disgusting or gross, and that becomes very toxic for the child but also the child-caregiver relationship,” Mrs Khan said.
“It can help to externalise the problem: This is a health problem that we’re working on together. Let’s make a plan for today. This helps to untangle some of the child’s big emotions and avoidance and gets them to find solutions together.”
“Generally, kids don’t talk about their problems, they show their feelings through their behaviour. They don’t have well-developed coping strategies for their problems. When they are blocking, withholding and avoiding the topic, those are classic signs that the child needs help. Look at the problem as a health problem and decide on some practical action steps you can take together to work on it.”
While it can seem like a useful action, you should avoid googling symptoms. Aim for reputable sources such as those provided by your health professional or the Continence Foundation of Australia.
There is a high crossover between neurodivergence and delays in toilet skill development, and bowel and bladder difficulties. Therefore children with diagnoses such as Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), anxiety, depression and/or chromosomal abnormalities are likely to need additional support with toileting independence.
Mrs Khan reports that according to international studies, toileting difficulties should be screened for all disability groups: if your doctor or health professional hasn’t already initiated the continence conversation, it is important to do so.
SETTING UP YOUR CHILD FOR SUCCESS
Setting up your child for success means that you believe that they can do it, if not now, then in the future. Mrs Khan says that almost all people can become continent or at least independent with most aspects of toileting. It also means being realistic about what we’re asking the child to do. If the child doesn’t have a reliable urge to go to the toilet, we can’t expect them to go to the toilet when they should. It’s just not fair. They will need reminders instead.
“Set their goals based on what they can realistically achieve otherwise from the beginning the expectations are too high and the child gets upset because they just feel as though it’s not possible. What you are really celebrating is child participation in caring for their own body,” Mrs Khan said.
Activity during an occupational therapy session
Search for the closest public toilet anywhere in Australia on the National Public Toilet Map!
The National Public Toilet Map has over 22,000 public toilets listed, including opening times and available facilities.
Go online at toiletmap.gov.au or download the National Public Toilet Map app via the Apple App store or Google Play
SCAN HERE
BE SMART ABOUT YOUR HEALTH DR DINARA MARKHABULLINA
Dr Dinara Markhabullina, a passionate advocate for women's health and family medicine, was born and raised in Uzbekistan. In 2006, she graduated from Kazan State Medical University (Russia) with
WHY IS IT IMPORTANT TO BE OPEN ABOUT YOUR INCONTINENCE WITH YOUR DOCTOR?
Being open about incontinence with your doctor is crucial for several important reasons:
Accurate Diagnosis: Incontinence can be a symptom of various underlying health issues, ranging from urinary tract infections to neurological disorders. By openly discussing symptoms, your doctor can conduct a more thorough evaluation, including medical history, physical examinations and diagnostic tests to accurately identify the cause. Effective Treatment: Many treatment options are available for incontinence, including lifestyle changes, medication, physical therapy and sometimes surgery. Your doctor can tailor a treatment plan based on the specific type of incontinence (stress, overactive bladder, urinary retention with overflow, functional) you are experiencing and the underlying cause.
Improved Quality of Life:
Incontinence can significantly impact your quality of life, affecting daily activities, social interactions and emotional wellbeing. Effective management and treatment can improve comfort and confidence, reducing the social stigma and embarrassment often accompanying these conditions.
outstanding academic achievements, earning a Doctor of Medicine degree with distinction.
With a genuine dedication to preventive medicine, Dr Markhabullina's career has centred around empowering individuals to take charge of their wellbeing. Her commitment to providing comprehensive healthcare has led her to pursue further specialisation in the field of General Practice (GP), where she aspires to acquire her fellowship degree. We speak with Dr Markhabullina on how patients can get the most informative and actionable information from their GPs.
Prevention of Complications: Untreated incontinence can lead to other health issues, such as skin infections and urinary tract infections, and impacts on mental health, like anxiety and depression. Early and open discussion with a healthcare provider can help prevent these complications.
Personalised Care: Discussing incontinence with your doctor allows for a customised approach to care. It helps the doctor understand how incontinence affects your life and tailor potential treatments that suit your lifestyle and preferences.
Educational Opportunity:
Conversations with your doctor can be educational. They can help you understand the mechanisms behind incontinence, how different treatments work and what lifestyle modifications might be beneficial. This knowledge empowers you to participate actively in your care and management.
Being transparent and communicating with your doctor about incontinence is crucial to effectively managing the condition and improving your overall health and quality of life.
Dr Dinara Markhabullina
DO GP s FOLLOW ANY SPECIFIC PROCEDURE WHILE ASSESSING PATIENTS WITH INCONTINENCE?
During an assessment, it is crucial for a GP to fully understand the individual's health background to determine their risk of developing urinary or bowel incontinence. For instance, if you are a 50 year old woman who experienced a traumatic childbirth delivery in the past, your GP is likely to ask specific questions related to incontinence because your historical data suggests you might be susceptible. The approach differs significantly when dealing with a patient who has recently suffered a spinal injury, affecting the ability to control bladder and bowel functions. There is no immediate urgency in the first scenario, allowing the GP to focus on a thorough diagnostic process. However, in the case of a spinal injury, the GP must act quickly to organise an urgent referral to a neurosurgeon to address the acute needs and prevent further complications.
WHAT SIMPLE THINGS CAN PEOPLE DO TO MANAGE THEIR INCONTINENCE AND LEAKAGE?
Ideally, it would help if you visited your GP. You need to undergo a proper diagnostic process and implement an effective management plan. You need to get an appropriate diagnosis and see what's happening to you: for example, is it stress urinary incontinence or an overactive bladder?
WHICH QUESTIONS ABOUT INCONTINENCE DO GPS USUALLY ASK PATIENTS?
A GP will cover your medical history. Doctors will need to exclude any other conditions as possible causes or contributory factors of incontinence, such as recurring urinary tract infections, a decrease in oestrogen, poorly managed diabetes, some medications or dietary preferences as these conditions can play a significant role.
Lifestyle modification, such as reducing strenuous work (especially heavy lifting, pushing and pulling), weight loss strategies, physical activities and diet, should be addressed. Additional attention should be paid to chronic complaints such as a cough or constipation. This way, doctors will get a clear picture of your health. It's like a puzzle. The more details you collect, the clearer the final picture will be. From here, a management plan will be commenced.
A management plan can be diverse; it's not just about giving a patient a magic pill. In most cases, it is possible to start with lifestyle modifications and some primary interventions, such as pelvic floor muscle exercises, bladder training (which includes techniques to help you hold on when you need to rush to the toilet) and simple education about diet and fluids.
Your GP can then refer you to a continence health professional or service for a more detailed assessment and education, which can contribute significantly to management.
WHAT PROMPTS DISCUSSION ABOUT INCONTINENCE?
Whatever causes discomfort should be addressed seriously. Urination and bowel movements are basic human needs. If they dramatically affect one's quality of life, they need to be addressed.
YOU MENTIONED OVERACTIVE BLADDER AND STRESS URINARY INCONTINENCE BEFORE. HOW CAN YOU DESCRIBE AND EXPLAIN THESE CONDITIONS?
Two critical muscles - the detrusor muscle (bladder muscle) and the sphincter (the muscle that holds urine in the bladder), play significant roles in maintaining urinary control. Dysfunction in either can lead to conditions like overactive bladder and stress urinary incontinence.
Whatever causes discomfort should be addressed seriously. Urinary and bowel movements are basic human needs.
If they dramatically affect one's quality of life, they need to be addressed.
The detrusor muscle is responsible for the storage and release of urine. It can stretch significantly to accommodate a lot of urine. However, in some cases, the detrusor muscle becomes overly sensitive, leading to a condition where even the smallest amount of urine can provoke a strong urge to urinate.
This hypersensitivity causes the pressure receptors to become overactive, signalling the brain that the bladder is full when it isn't. As a result, individuals often feel the need to return to the toilet shortly after urinating.
HEALTH LITERACY IS EMPOWERING
When a GP describes the condition to patients and gives more detailed medical information, patients often feel empowered and their anxiety about their situation decreases significantly. Patients start understanding what's happening and what can be done to fix that. Historically, there has always been a stigma surrounding incontinence. However, stigma and not being comfortable to discuss leaking can also be related to a lack of knowledge.
It can be a long process but GPs can provide you with real hope and real advice, and at least you will then be able to start to get back to doing all the things you love with greater confidence and comfort.
CARER OF THE YEAR MARIA ERCEG
Maria was born in Kenya and grew up in the Seychelles. Maria spent many years living with her grandparents in the Seychelles, separated from her parents while they stayed in Kenya. In 1968, Maria then migrated to Australia with her family.
Since moving to Perth, Maria became a carer to her mother who experienced a mental illness. As the only female among three brothers, the carer role seemed to land on Maria’s shoulders.
“I was in and out of hospitals, emergency rooms, doctors' appointments, chemists, it was a pretty fullon role,” she recalls, adding that her mother is much better these days and Maria visits her regularly.
Her mother and father weren’t always on the best terms, however due to a dementia diagnosis Maria's father also came to live with them for a while. This wasn't sustainable however, as Maria couldn't manage caring for both her father and her husband who has had Parkinson’s disease for the last 20 years. “My husband’s health is going downhill more and more. There’s a lot of anger, stress, anxiety and crying from the both of us,” Maria says.
From Maria’s point of view, there are a lot of carers out there who have difficult experiences and often don’t want to say or talk about what they’re going through because they feel like people don’t understand.
“Sometimes they just don’t want to talk about it because they feel like people won’t be able to understand and empathise or they will feel burdensome,” she says.
“We just do what we have to do and get on with it.”
“That’s how I felt at times because I didn't want to burden our family, especially since I’ve got three children and they have their own families and their own things to deal with. I don’t want to add extra weight to their load but nevertheless they are a huge support to me as well as my husband.”
“We’ve been through a lot and they all tell me that anytime I want to talk or vent, they’re here for me, and I’m very grateful to them for supporting me.”
Despite [her challenges], she continues to provide kindness, compassion and love to everyone around her.
People often say that she is one of the friendliest and kindest people that they have ever met, and it is second nature for her to make sure everyone around her is okay. Whilst I am grateful to have such a nurturing and beautiful mother, I wish she had more opportunity to do things for herself. When the time comes, I will ensure that I care for my mother, the way she has done so for everyone around her.”
Karis Erceg, Maria's daughter, Carer of the Year award nominator.
NAVIGATING THROUGH THE CHALLENGES OF CARING
“I do cry, I do talk to my kids and I am getting counselling as well as my husband,” Maria says.
“We have our moments of course, as this disease creates a lot of issues, but counselling helps by giving you the tools when you have your moments.”
Maria says having something just for yourself is invaluable for your self-care.
For Maria, it is listening to music. “Music is my big thing,” she says. “I go to Zumba and I go to Carer’s WA and my husband and I go to a Parkinson’s support group, and I find that very good.”
“It’s important to take some time for yourself.”
“Being a carer is exhausting and tiring, and often you lose your sense of identity,” Maria explains, emphasising carers need an outlet to keep them happy because they can easily lose themselves.
“My husband and I both felt lost, it affected our marriage and that’s why we are getting counselling.”
“It’s important to find something in your life that makes you happy, even if that means going out for a coffee, going shopping, or getting out of the house briefly. Just do something to make your brain happy. To hang onto. It’s not easy. I’m working on myself still but I’m getting there slowly.”
“One of the most important things for new carers to know is that every situation is different and people need to get as much information as they can to properly understand their own circumstances.”
“I think you’ve got to know what the problem is, learn as much as you can about what might happen in the future and inform yourself, so you know what is ahead of you and find ways to deal with it,” Maria says.
“The best thing is to be informed and talk to your partner, or whoever it is that you're caring for, and also for them to know what you’re going through, so you understand each other so that you are all on the same page.”
“Try and be positive if you can and find something that makes you happy. That’s pretty much it.”
The
best thing is to be informed and talk to your partner, or whoever it is that you're caring for, and also for them to know what you’re going through, so you understand each other so that you are all on the same page.”
A CHANGE IN PERSPECTIVE
CAN CHANGE YOUR LIFE
Mother of five Puspa Sherlock looks at life with incontinence through a different lens, finding that a change in perspective can change your life for the better.
Incontinence has always been a part of Puspa Sherlock’s life. When she was eight years old, Puspa started to wet the bed. Upon seeing a specialist, it was discovered she had a kidney infection. Although it was no fault of her own, she clearly remembers being teased at school and punished for wetting her pants.
Thirteen years later, when she had her first child, those early memories of incontinence would shape her thoughts “I was worried that my husband wouldn’t look at me in the same way because I just had a baby and I was incontinent. But he was fine. It was just my subconscious shame because of my early memories of being ostracised at school,” Puspa said.
We now have people with lived experience, we now have people who provide peer support, go look for your tribe because your tribe is out there. You’re not alone.''
“In those days too, we didn’t have accessibility to disposable underwear like we have now. I became very self-conscious that I was going to start smelling. No one ever sat me down and said that it was ok.”
As Puspa’s incontinence was linked to her pregnancy, she wasn’t reluctant to seek help. She recalls the child health nurse that came to visit her after giving birth.
“She was not only proactive with her concerns of the wellbeing of my child but my own health,” Puspa recalls.
“She was concerned if I was seeing someone about my incontinence and if I needed physiotherapy to work on my pelvic floor exercises. She was so comfortable having that conversation with me. She asked how she could help, what could be done and she normalised it. There was no judgement. There was just acceptance.”
Four years ago, when she was 48, Puspa had a stroke, following a brain infection – stemming from isolated chronic sphenoidsinusitis and meningitis. She was paralysed on her left side for 22 days and had nurses and allied health professionals (such as physiotherapists and occupational therapists) tend to her for the activities she could no longer perform. When she was able to return home, her daughters cared for her.
Puspa
“Mum you changed our nappies when we were babies, so now it’s our turn to change yours,’ my daughters would say to me,” Puspa said. “I’m so grateful that my kids didn’t view that as a burden and neither did my physiotherapist and allied health team. The level of acceptance was amazing. I was so lucky.”
While initially Puspa felt embarrassed that her children had to care for her, turn her over and put continence pads on her, she now looks at the situation from a different point of view. She feels grateful that we live in a society where we have access to adult continence products. “I think to myself, imagine if my kids had to put a cloth nappy or a towel on me and had to turn me around. But thankfully we have ease of access to these products that can really help us get through the day and allow for situations to be manageable,” Puspa said.
After her stroke, Puspa also suffered very badly from Post Traumatic Stress Disorder (PTSD), a part of her journey also caused her to regress to talk like a child.
She recalls her children, including her son who was just seven at the time, sitting down with her and talking to her as normal, saying that they didn’t want to ostracise or stigmatise her. She says the fact that her children normalised the situation made the recovery a lot easier and was imbued with a very strong sense of acceptance.
“We have a saying in my house where we say, let’s turn stumbling blocks into stepping stones,” Puspa says.
Today, Puspa needs to wear a continence pad, especially when she teaches self-defense. With four First Dan black belts in four different styles of karate, she teaches the classes as empowerment programs for those who have been bullied or survivors of domestic violence.
She says there will be times when she must demonstrate a 'throw-down' and she finds herself thinking about how she will most likely wet her pants. But she will be open about it.
“In the class I’ll say if you see a little bit of a bulge it’s because I’ve got an adult continence pad on. And the class will look at me and will go “oh” and some of them will say "oh guess what, I wear a continence pad too." And suddenly it’s so easy and they’re prepared to train because they are comfortable and they know they will be okay if there may be a slight leakage accident. But it was that conversation that had to be started. It was that normalising,” Puspa said.
POST TRAUMATIC STRESS DISORDER (PTSD)?
PTSD is a set of reactions that can develop in people who have experienced or witnessed a traumatic event that threatens their life or safety (or of others around them). For more information please visit BetterHealth
STRENGTHEN YOUR MENTAL HEALTH, FIND YOUR TRIBE
“Believe me, when you do say you've got an incontinence issue, you have no idea how it resonates with so many people, who then say that they do too and that starts a journey of very healthy and productive conversations and relationships.”
While it might seem difficult to start the conversation or to mention that you are incontinent, Puspa says that there really is nothing to be ashamed of, it is often our own perception. She encourages anyone and everyone who has been in circumstances that have led them to be incontinent, that it is ok. There is a whole tribe of people out there, like Puspa, who are also incontinent and understand your journey. “We resonate and you are not alone.”
In all the years that I’ve been teaching self-defense, I can’t say that anyone has ever told me that they’ve been put off by my comment or they're not comfortable. It’s just comfortable and no one is walking on eggshells.
“People come up to me and say that I am so open with my journey especially with my incontinence and I’m in a society where I can access products that are convenient for me."
“I think if I was in a developing country where it can be hard to access the luxuries including continence pads, if I put myself in those shoes, I think it would be difficult, but now, here, it feels normal, it’s part of life. It’s like sneezing. And yes I wet my pants when I sneeze and yes I’m going to wet my pants when I laugh, but guess what, it’s my body and if you can’t accept it, it’s fine, I have my tribe.”
BREAKING DOWN HEALTH BARRIERS IN CULTURALLY DIVERSE COMMUNITIES LAKSHMI'S * STORY
Lakshmi, who moved to Australia from India in the 1970s when she was just eight years old, says that many women from culturally and linguistically diverse backgrounds often don’t seek help for their incontinence. “That’s why I wanted to share this story because if it inspires anyone to seek assistance, then I feel it's been worth it. I think there are many women from culturally diverse backgrounds who don’t seek help and just struggle in silence or just think this is their way of life and don’t seek some help to improve their lives.”
Living in country Victoria, Lakshmi initially pursued a Diploma in Science, and then a related career. However, after having children she pulled towards community work and pursued a Master of International and Community Development.
“That’s what I did while I was at home with my children for a couple of years after they were born. I realised that community work was my passion and so I retrained in community development,” Lakshmi says.
“It was a very, very busy time for me. I was holding three part time jobs and studying, no doubt wearing down my body a little during the process without knowing it.”
It was during this time in her late 40s when she realised that she had a problem with incontinence.
“It happened every time I coughed or every time there was a bump on the road when I was driving. I knew I had urinary incontinence. I was always fearful of those situations, but I just put up with it,” Lakshmi says.
The final straw, she says, was when she was on a family trip in India and was on a bus. She describes the roads in India as quite bumpy. She was travelling from one city to another and by the time she reached the destination, she says she was completely soaked.
“I thought this is just ridiculous. When I came back from India, I sought help. But it took a while because all these tests needed to be done,” Lakshmi says.
She was diagnosed with a bladder prolapse (pelvic organ prolapse) and needed surgery.
“I finally got the surgery. I can’t tell you just how much of a difference it made to my life afterwards. It was like a new lease on life.”
Preceding the years before the fateful bus trip in India, Lakshmi says she certainly didn’t think she had a prolapse, instead believing that it was related to her pregnancy, that simply muscles become looser with older age and that’s why one may become incontinent.
“I have seen much older women forever running to the toilet, so I thought maybe that’s just something that women go through,” Lakshmi said.
The journey to find a diagnosis and support was chartering into the unknown, as Lakshmi was unaware of the testing that needed to be done after her visit to a GP. The tests, she says, were quite involved and there were also many tests that needed to be done between the initial visit to the GP and the final surgery.
“I can see that maybe some women would be put off by the many tests. You are sitting on a toilet and everyone is watching you to test the flow and volume of urine passed,” Lakshmi says.
“I had no idea what the journey was going to be. I was just following the doctors’ instructions.”
Regardless of the discomfort of the testing, Lakshmi says she would still tell women who are experiencing symptoms that there is a better quality of life once you do go through it all.
She says people can still have a good quality of life if help is sought. People don’t need to spend time planning their days around where the toilets are, or not going out at all for fear of not being close to a toilet.
Don't limit your lifestyle. I think subconsciously you do that and you kind of accept it. You subconsciously think 'I'm not going to go for a walk in the park because there's no public toilet available.’
Lakshmi says these women are simply missing out on a lot in life.
“I have seen older women just staying around the house near the toilet because that’s where they feel safe. It is unfortunate that help wasn't sought earlier.”
“I have learned that help is available, there is an opportunity to improve the situation and have a 100% improvement in your life.”
Particularly for those from culturally and linguistically diverse backgrounds, Lakshmi says they don’t have to put up with incontinence and the problems that it causes and that it is important that you give yourself time to look after yourself and get some help with that.
“It might take a while to normalise incontinence in a conversation in the Indian community. There are many stigmas. Even talking about menopause will take a while for that to be an open issue. I think incontinence falls in the same bucket. We can work towards it,” she says.
Her main message is quite simply, that you don’t have to suffer in silence.
“Don't limit your lifestyle. I think subconsciously you do that and you kind of accept it. You subconsciously think 'I'm not going to go for a walk in the park because there's no public toilet available.’ You don't realise that your life is getting smaller. Life should be much better than that. You don't need to put up with substandard health.”
Cultural sensitivities need to be addressed and communities need education. Work needs to be done on both ends: current health services need to
PELVIC ORGAN PROLAPSE
Pelvic organ prolapse (POP), occurs when one of the pelvic organs sags and may bulge or protrude into the vagina. There are many different types of prolapse and it is important to have any prolapse properly assessed.
understand cultural sensitivities, and culturally and linguistically diverse communities need to try to remove any stigma, any shame, any misinformation and so on.
“I think it requires an education campaign to spread the message," says Lakshmi. “It should say, ‘don't suffer with this in silence. Seek help. Get quality back in your life.”
In the meantime, Lakshmi says she plans to continue working in advisory roles. She would like to use her experiences in life and health to shape policies. This is where she sees herself in the future. “I always want to contribute to my community work. I don’t ever see myself stopping or retiring.”
While having remained anonymous in the story Lakshmi* is open to having private conversations with people seeking support or help. Please contact media@continence.org.au
In many cases, incontinence can be treated, better managed or even cured. Call the National Continence Helpline on 1800 33 00 66 for free and confidential advice about incontinence. Our Nurse Continence Specialists are available to talk Monday to Friday, 8am - 8pm excluding national public holidays.
