Tuesday, August 26, 2014

The impacts of living with endometriosis

Photo courtesy of Donna Ciccia, Endometriosis Australia
Tonight, as you read this, I will be co-MCing a sold-out (tickets were free but limited) endometriosis information night organised by the Women's Centre for Health Matters at the Legislative Assembly in Canberra. At this event, co-founder Katie Williams will be delivering this speech on behalf of the Canberra Endometriosis Network. I'm pretty sure I'm going to cry.

C.S Lewis said, ‘Friendship is born at that moment when one man says to another ‘what you too? I thought no one but me…’ 

This sums up how Libby and I felt after meeting at an endometriosis information night in May 2012. She newly diagnosed, me at 25, a veteran of 7 years. We had both been living with the impacts of endometriosis since our first period. Before we met we each felt isolated. Together, we knew we were stronger and could not only face this disease, but also change the landscape for others with the same diagnosis. And so, that quote became the motto of what we wanted to achieve.

We created the Canberra Endometriosis Network not long after; initially there were just 3 of us, catching up in my lounge room. We have now proudly grown to over 120 women and have monthly meet ups at the Women’s Centre for Health Matters. We are thankful for the ongoing support of Angela, Marcia and the WCHM, especially for organising and bringing us all together here tonight. To Melissa and the Canberra Endometriosis Centre, we thank you for bringing Libby and I together in the first instance and for your ongoing support and referrals to our Network.

The Canberra Endometriosis Network supports and welcomes women at all stages of their journey with endometriosis from those in their teens and at the beginning of their journey, through to those still living with the effects of the disease post-hysterectomy. Tonight you will hear a range of experts talk about the symptoms and consequences of endometriosis from a medical point of view. But endometriosis impacts not only a woman’s physical well being; it impacts almost all aspects of her life.


The widely accepted prevalence of endometriosis is one in ten, but medical professionals acknowledge this number could in fact be much higher. This is a staggering statistic, considering most people in the general population haven’t even heard of the disease and yet with similar or lower prevalence rates we all know about diseases and conditions such as diabetes, arthritis and multiple sclerosis. [Note by Libby for the blog - all these diseases are recognised by spell-check, endometriosis isn't!!]

Endometriosis is rarely recognised, at a minimum, as a chronic health condition, we need to change that. As a society we need to stop seeing endometriosis as a ‘woman’s problem’ but rather a problem that affects all of us. We need to stop seeing it as a condition that affects her menstruation, but rather a condition that requires consideration of the whole person and a multi-disciplinary approach. We need to break down the taboo that remains because talking about endometriosis involves talking about painful sex and painful menstruation. For these reasons there remains a strongly misplaced stigma around suffering with the disease.

In part due to the lack of awareness and ongoing stigma, one of the most significant impacts of living with endometriosis is the feeling of isolation that often starts with the onset of symptoms. And it is just not awareness amongst family, friends, teachers, employers and colleagues we crave, it is awareness amongst the medical community.

The average time it takes for a woman to get an accurate diagnosis of endometriosis is 7 years. Bringing with it a range of often-contradictory emotions. From relief to grief, from empowerment to helplessness, from knowledge to confusion, finally knowing the cause of your pain has a name and yet also knowing there is no cure.

During the interim period to diagnosis, women and girls often feel or are made to feel like they are attention seeking. In some cases this continues well after diagnosis, when treatments are ineffective, do not suit a woman’s lifestyle or needs, or worse when some symptoms are not identified and treated as being linked to, or caused by, endometriosis. When this happens women start to doubt themselves and their sanity.

As you will hear tonight, part of what makes this disease hard to live with, hard to manage and hard to treat, is that symptoms do not directly correlate to the extent of the disease and endometriosis and its treatment affects individual women in individual ways. What works for one, will often not work for another. The Network recognises this and encourages women to search for and find what works for them. This can range from surgery and medication to diet, exercise and physiotherapy. There is no one size fits all approach to endometriosis.


Symptoms of endometriosis include heavy bleeding and bleeding between periods, extreme and chronic fatigue and infertility. Perhaps the most puzzling symptom is diarrhoea and constipation, and as the endo sisters in the room will know well, the medical miracle that is experiencing both those symptoms in the same toilet visit.

But the most common and debilitating symptom is pain. The pain associated with endometriosis can range from constant, daily aches through to acute sharp, stabbing pains, very few of these are ‘period pains’, often women with endometriosis experience pain throughout the month. In many women constant pain over many years can lead to pelvic floor dysfunction, which Marita will talk about later tonight.

And it can come on in an instant. We may look fine one day, one hour, one minute, and be completely struck down with debilitating pain the next.

It is the invisible and unpredictable nature of the pain associated with endometriosis that impacts many women the most. It makes planning everyday activities, having a social life, making commitments to friends, work and hobbies at times feel impossible.

It is pain that often impacts so many facets of a woman’s life and the choices she makes. For me, in my late teenage years, that meant making the decision to forgo university as I could not commit to study when I couldn’t predict what my body would do. For others, that may mean that they need to take longer to complete study, or career paths that require long hours or are physically demanding are no longer an option. Sometimes passion and drive can overcome these hurdles, but often endometriosis leaves women in a very different position to that which they imagined they would be, leaving them with grief for what might have been. Many women with endometriosis end up re-evaluating how they measure their self-worth.


Endometriosis has a significant impact on our intimate relationships. Many of us long for the day when we can have spontaneous sexual experiences with our partners without worrying about the associated pain and often bleeding that comes with it. It is also important to note that simply the act of arousal can flare symptoms such as pain.

Many women who suffer from endometriosis also experience various levels of vaginismus (sometimes making penetration impossible). In these situations it is important to acknowledge the impacts and frustrations of sexual dysfunction on both partners. Many people express themselves physically as well as emotionally so when the physical is not possible, communication can be interrupted. It is important for partners to understand that it is not a lack of attraction or desire that leads to women with endometriosis not wanting to engage in sexual activity.

Between the pain, painkillers, side effects of medication (many of which result in diminished libido), medical procedures, unpredictable bleeding, unpredictable bowel and bladder habits, sore breasts and mood swings, a woman with endometriosis may not exactly feel ‘sexy’. But it does not mean saying goodbye to intimacy in your relationship. Taking the time to simply kiss, cuddle and enjoy physical closeness can be very powerful.

It is also important to acknowledge the impact of endometriosis on fertility and the threat of infertility. Infertility is physically and emotionally draining and can also really affect a woman’s self-perception of femininity and worth. Endometriosis is a leading cause of female infertility, and yet in 2014, the primary treatment is still hormonal castration.

Once those who wish to, accomplish the hurdle of motherhood, endometriosis and its symptoms such as pain and fatigue can impact the type of mother a woman wants or desires to be.

Some women are unable to work. Some find themselves facing thousands of dollars’ worth of surgical or fertility bills. The financial impact of having endometriosis can be an overwhelming burden and trigger for stress which in turn is a trigger for pain.Compounded with all the ‘unknowns’ of the disease, you can see how a woman may feel a lack of control.

For family and friends, the disease is hard to fathom and conceptualise because most of the time, we just don’t look sick. How can you see pain? How can you see fatigue? I guarantee that most women with endometriosis wished, at some stage, that they looked the part. But beyond the often-unimpressive signs such as scars, we carry on the outside, tonight you will hear; our insides tell a very different story.

Our symptoms are not imagined, created for convenience or to excuse behaviour. They are real. Women need to be taken seriously, have their concerns addressed and have their symptoms treated appropriately.

Endometriosis is a poorly understood, often inadequately managed and life-long condition with no cure. But is not all doom and gloom. Endometriosis has brought me some positive experiences and taught me some important lessons. It has taught me that my journey is individual. That I need to be my biggest advocate and the change I wish to see with this disease. That asking for help or taking time out are not signs of weakness, but absolutely necessary. It has taught me that I need to educate others who are ignorant of this disease. It has taught me to be more empathetic for the journey of others. And perhaps most importantly it has taught me resilience, to fall down seven times and to get up eight.

More recently it has taught me of the need for support for family, friends and partners of women with this disease, something we are still working on and why it is so important and heart-warming there are so many of you here tonight .


The Canberra Endometriosis Network is a shoulder to cry on, a sister to commiserate with and a platform to help see the bigger picture. We are 120 women with one goal, to help each other in the daily journey of living with the impacts of endometriosis.

No part of this speech can be used or reproduced without permission. Permission can be obtained by emailing canberraendometriosisnetwork@gmail.com. Feel free to share and pin this post though, as the more people who read Katie's words, the better! Thank you to Change Focus Media for volunteering their time to film the speeches on the night. Because of their gracious help, a youtube link to the speech will be put here as soon as it is available.

1 comment:

  1. I don't think I was aware that you had actually started the Endo Network in Canberra- and that there are so many women who are a part of it. That is truly amazing Lib - Canberra is lucky to have you :)


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