This blog post is the first in what I hope will grow into an ongoing series of Courageous Conversations had with courageous humans. I passionately believe in the power of shared stories, and I also believe that society as a whole needs to get more courageous in the topics we talk about, not only in the media and public eye, but possibly even more importantly, within the privacy (and safety) of our own homes.
A few weeks ago I had the great privilege of sitting down with a phenomenal woman to hear her story, which includes an ongoing struggle with the poorly understood condition endometriosis. This is a story about one of the most emotionally mature and insightful women I’ve ever had the pleasure of knowing. She lacks bitterness and cynicism, but rather displays a stoic resignation to essentially a lifetime of emotional turmoil and lack of support, not only within her own family, but also by a medical system that in my view failed her time and time again.
This article is not meant to be an educational piece about the specifics of endometriosis. My focus was on Jen (name changed for privacy), an inspiring woman with a fascinating story of strength, courage and resilience. My passion is about sharing the stories of women, because we all have a story to share. For more detailed information about endometriosis I would highly recommend the following resources as a starting point. The first article about the “Hysteria Myth” is particularly frightening when we consider how our medical system is so poorly equipped to deal with women’s health.
Please note the Australian Department of Health National Action Plan for endometriosis (third listed resource) was launched in July 2018….. you read correctly, less than 12 months ago. This is the first time that this debilitating condition has been officially recognised at a level that I hope leads to not only greater awareness and understanding, but action, funding, research and more effective treatment options. The first two paragraphs of the Ministerial Foreword (quoted below) are a poignant statement of the magnitude of the issue that women with endometriosis have and continue to face in seeking recognition, diagnosis and treatment for their condition.
“Just over six months ago, a group of passionate patients and parliamentarians banded together to shine a light on an issue that had been hidden for too long. They brought endometriosis to my attention as a condition that afflicts hundreds of thousands of Australian women, with often devastating consequences. I listened to the stories of women who had suffered in silence for so long, and resolved that on my watch, Australian women would no longer have to battle this in private. I issued an apology on behalf of the Australian Parliament and medical system for the historic failures that sufferers of endometriosis endured. I also announced that work would begin immediately on a National Action Plan for Endometriosis, as a first ever national approach to combat this insidious condition.”
Jen was 13 years old when she experienced her very first period.
Something that should be acknowledged as a milestone, an important transitional event for every girl becoming a woman, was an extremely traumatic event for Jen. It started with the onset of pain in the pelvic region (aka “period pain”) that continued to escalate to such severity that she was curled up in the foetal position, rocking, sweating and ultimately vomiting and fainting. The pain persisted and fluctuated for sometimes days during her period, causing subsequent exhaustion and inability to function with any normality. Jen had no idea what was going on and why this was happening to her and it was terrifying and overwhelming. This experience was consistent for Jen from then on, every single time she got her period. She would have little warning as the symptoms started and she would literally have to drop everything she was doing to try and get home to her bed. This meant a lot of missed school. Unfortunately for Jen, there was a lot of other stuff going on in her life that wasn’t conducive to a healthy and productive educational journey and sadly she had very little in the way of personal or emotional support from her family.
Jen’s mother separated from her abusive alcoholic father when she was a still a baby. Her second husband, Jen’s stepfather, was also an abusive alcoholic.
Thus, she grew up in a very unstable family environment with an emotionally unavailable mother who was struggling to cope herself and whose primary coping mechanism was avoidance. This was particularly difficult for Jen on reaching her teenage years, with her traumatic monthly periods exacerbating an already challenging period (no pun intended 😁) in anyone’s life. Jen recalls going to a male doctor at one point with her mother and being told it was ‘just period pain’ that it was ‘normal’ and that she should ‘get pregnant’. She was provided with no further information, advice, support or referral. She recalls the doctor’s attitude as dismissive, which only served to intensify her feelings of helplessness and isolation with regards to her condition.
Following this appointment Jen recalls her mother shutting down any further conversations about her symptoms and pain. There was no opportunity for dialogue about this, or any other issues Jen may have been experiencing. Jen is a highly intelligent, articulate woman who is also surprisingly emotionally open given her upbringing. She says for her, speaking out when something was wrong or when she didn’t agree with something, was her way of coping throughout her childhood. As a result, she was seen as a ‘difficult’ and ‘argumentative’ child and feels she was often the scapegoat for the ongoing issues between her stepfather and her mother. Although not clinically diagnosed, Jen describes being extremely depressed throughout her final years of high school with her average school attendance dropping to about 20% due to her physical and mental health issues. Family instability culminated in her being put on the stand in court one day, confused and intimidated, to testify against her stepfather. Throughout this turmoil, Jen recalls her periods consistently making her extremely ill. However, doing anything about it was simply not a priority. Her only management strategies were retreating to bed, self-medicating with pain relief, anti-inflammatories and hot packs.
Jen moved out of her family home at her earliest opportunity.
During her late teens and early twenties she recalls her symptoms worsening and lasting longer. She developed chronic gastritis as a result of the high levels of pain meds she was taking. She had no appetite and was chronically underweight and undernourished. Although she was working and trying to sustain a job, her immune system was compromised and she was sick a lot. Her mental health was suffering and she was self-harming. She recalls a doctor’s visit and a referral for an endoscopy, which she never got around to organising.
Despite everything, Jen had always valued education and had always fostered a desire to study teaching at University.
Finding herself unable to sustain a job and pay rent, Jen’s only option in her early twenties was to move back in with her mother and brother where she went back to studying for her tertiary entrance examination. She took and passed her University entry level test and says this gave her a boost of confidence “I wasn’t in good shape at the time, as luck would have it my period came on that day….but I passed. So, I figured if I could pass in that state, maybe I would be ok at Uni”. From there she attempted to start Uni, however, ultimately had to defer after ending up being admitted to the Psych Unit for management and monitoring for a week.
Two significant life events happened in Jen’s mid twenties.
Number one she managed to track down her biological father and made the decision to move to the UK to meet and get to know him. Secondly, she met and fell in love with a woman she met in Perth who was from Norway. Her reunion with her father was bittersweet. Although, not particularly ‘bad’ in any way, he was caught up in the drama of a recent split from his wife and children and not particularly interested or invested in fostering a relationship with Jen. This was devastating for Jen as she had pinned hopes on the reunion, but also because she acknowledged to herself for the first time that she really didn’t have anyone in the world she could trust or rely on.
So she moved to Norway to be with the girl she had met in Perth.
She lived there for two years, working in a salmon factory. Whilst there, she was frequently hospitalised for colds, flus and chest infections as a result of her impaired immune system. She was also suffering with significant dental issues as a result of the chronic vomiting associated with her ‘period pain’. She recalls at one point ‘passing something’ like a flat cartilaginous shoe lace during her period, so was admitted and reviewed by male gynaecologists who didn’t speak English. They wrote “PCOS” on a post-it note and sent her on her way, again with no further advice, treatment or follow up plan. For the record, Jen does not have Polycystic Ovary Syndrome (PCOS).
Jen and her partner decided to move back to Australia, where unfortunately Jen’s partner’s mental health began to decline rapidly, resulting in admission to a Psych Unit and subsequent psychological follow up appointments.
It was at one of Jen’s partners appointments that a doctor made a passing comment that perhaps Jen had ‘endometriosis’. This was the first time in her life, in her late twenties, that Jen had ever heard the term. This was at a time where Jen’s periods were frequently resulting in Emergency Department (ED) visits, where she says due to her appearance (underweight) and poorly understood symptoms she was ‘treated like a drug addict’. She said it took for her to reach the point of vomiting for anyone to take her seriously. Then they would simply give her morphine and send her on her way.
Until one day Jen put her foot down.
Everything in her life was falling apart, her partner had up and left back to Norway and she was fed up with being dismissed and ignored by the medical system. One day in ED she simply said “Im not leaving until you do something, refer me to someone who can help me find out what is going on”. So she was referred to a specialist women’s hospital where she had her first ever Pap Smear. The result showed abnormal cells so she then underwent a biopsy which was extremely painful and resulted in prolonged bleeding. She was then put on a year long waitlist for a laparoscopy. Still at this point, Jen did not have a diagnosis or any kind of formal management plan for her symptoms.
At the age of 28, 15 years after her first period and symptoms, Jen underwent a laparoscopy which showed she had endometriosis which was simultaneously treated via surgical ablation. Post-operatively she was advised to have a device inserted which releases hormones into the uterus. Jen declined as her instincts told her that having an invasive device in her uterus was not the solution. So she was then advised to start on the pill (progesterone).
For 3 or 4 years following the surgery and since starting on the pill, Jen’s symptoms reduced drastically to a point that Jen considered her condition may be manageable.
With a diagnosis she has been able to research her condition and learn about other management strategies, such as how diet can impact the inflammatory component of her condition. However, she had to explicitly ask her doctor for a referral to a dietician based on her research, as at no time was this suggested or recommended for her. She has also joined a Facebook support network which has been helpful. Knowing that she is not alone and that every woman with endometriosis has suffered greatly, even those who had a stable family upbringing and lots of support, provides a level of comfort and inclusivity. She met and moved in with a stable, loving and supportive partner and went back to Uni, successfully completing her teaching degree and starting work as a teacher.
There isn’t necessarily a fairy tale ending to Jen’s story, but life is a journey not a destination and there is no cure for endometriosis.
Jen still has relapses every now and then, and still has days where she spends the day in pain and in tears. She has to live with the scars of 15 years of general poor health, poor nutrition and poor immune function as a result of a condition that was undiagnosed and poorly managed.
I wanted to hear Jen’s story, not because of her endometriosis, but because of who she is in spite of her endometriosis.
Personally, I feel the greatest adversity anyone can face is an unstable family environment growing up and a lack of family and social support. Without this stable base and sense of support, the capacity to negotiate the tough teenage years and chase your dreams into adulthood is incredibly hard work. Jen has persevered and her passion for her teaching and for her students, particularly for those students who don’t fit the mould or who are struggling, really shines through. Jen exudes a toughness, resilience, softness and vulnerability all at the same time and I think having the courage to be open with vulnerability is the one of the bravest things we can do.
To finish, I asked Jen what she hopes to see change with regards to endometriosis moving forward, and here are the main points in summary:
- Awareness and understanding in the greater community, about the condition and how it manifests, what the lived experience is actually like and the associated personal, social and economic burden
- Training and education programs for medical practitioners. Jen to this day doesn’t have a regular GP as she cannot find anyone who is willing to take on her case as they simply don’t feel they have the knowledge or skills to help her. The National Action Plan is a good start. There is now a newly created Pelvic Pain Clinic at King Edward Memorial Hospital staffed by a Pain Specialist, Women’s Health Physiotherapist and Psychologist, all with specific training in the management of endometriosis. However, like many public health clinics, there is a 6 month waitlist. To my knowledge there are no specialised private services in existence.
- Removal of the stigma associated with the symptoms of endometriosis (and any women’s health condition for that matter). We (including most women) are guilty of blaming hormones and normalising hormone related issues to the point where it is not taken seriously (the ‘hysteria myth’). Ignorance, paired with a dismissive attitude can be very damaging and contributes to poor mental health in sufferers.
- Formal recognition resulting in appropriate medical rebates. Currently none of the hormone medications are under the PBS and an ultrasound scan that has the capacity to diagnose costs $300 out of pocket.
- National Disability Insurance Scheme (NDIS) eligibility – criteria for NDIS eligibility in a nutshell is under the age of 65 with an impairment or condition that is likely to be permanent which currently applies (in theory) to endometriosis. However, there is no precedent for the recognition of endometriosis under the scheme and this would be a big step in supporting sufferers.
Do you or does someone you know and love suffer from endometriosis? I’d love to hear your story. If you’re willing to share please drop me a line at firstname.lastname@example.org I also know some fantastic Women’s Health Physiotherapists who may be able to provide support and treatment.
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