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23 March 2022 | Story Geraldine Meyers-Mashamba | Photo Supplied
Geraldine Meyers
Geraldine Meyers-Mashamba is Head of Quality Management on the University of the Free State (UFS) South Campus and Treasurer of the UFS Women’s Forum. She is also an endometriosis warrior who now wants to create awareness about this invisible illness.

Opinion article by Mrs Geraldine Meyers-Mashamba, Head of Quality Management (UFS South Campus) and Treasurer of the UFS Women’s Forum.
Endometriosis and/or its accompanying symptoms are perceived by many as an invisible illness; it is often dismissed, misunderstood, and considered exaggerated. Shockingly, very few young people have heard of endometriosis, and what is worse is that millions of women globally suffer from endometriosis, but they are not aware that they have the condition and oftentimes go undiagnosed for many years. 

With March being Endometriosis Awareness Month, I thought it fit to share my experience with peers. Why me, you might ask? Well, I have had endometriosis for the longest of times – stage three endometriosis to be exact – and it has been so much fun (no, I’m lying, it has been absolutely horrific to say the least). 

March is national Endometriosis Awareness Month, and perhaps sharing my most intimate and untold story will create awareness around this chronic disease. So, let’s talk about it. What is this ‘endometriosis’ I’m talking about?

Endometriosis defined

Endometriosis is identified as the second most common gynaecological condition, affecting one in ten females. It is classified as a chronic inflammatory disease in which the lining of the uterus, also known as the endometrium, grows in places where it really shouldn’t. You can read more about the common symptoms of endometriosis at here.

Allow me to take you through my experiences.

The meaning of life with endometriosis

Endometriosis impacts all facets of one’s life. It isn’t just a bad period; it can literally ‘blow up’ your life, causing psychological distress, physical pain, financial constraints, and it has a devastating impact on a woman’s education, professional and personal relationships, and quality of life as a whole. 

What often makes me furious, is that there has been and still is this societal acceptance that having agonising, painful periods are merely part of having a uterus, and that it is totally normal to experience so much pain, which interferes with your daily activities. It is absolutely ludicrous, but unfortunately this myth is very pervasive. 

From a very young age, I normalised the chronic pelvic pain and heavy menstrual flow I was enduring, mainly because I was not taught any different. We have been taught that heavy and painful periods are just a ‘normal part’ of growing up and being female. None of my friends had the same complaints and experience that I had, and some teachers thought that I overexaggerated the horrifically intense pain and discomfort I was feeling. In addition to the heavy period, intense back pain, headaches, and fatigue, I also constantly suffered from constipation and even iron deficiency as a result of the heavy menstrual flow. Not surprisingly, donating blood was not considered an option, as I did not have enough blood to donate. 

For more than 10 years, I was sent from pillar to post, one specialist to the next, each time with a different diagnosis and some prescribing various oral contraceptives for my ‘hormonal imbalances’. Thinking about it now, I bet you cannot name an oral contraceptive that I have not used before. After years of contraceptive use, I started getting anxious, thinking and wondering – with all these contraceptives I have consumed over the years, will I even be able to conceive one day? 

In the year 2020, I refused to continue taking oral contraceptives because of the severe side effects it had on my body. My GP referred me to a gynaecologist, who then diagnosed me with stage three endometriosis. Although a scary discovery at the time, I cannot describe how pleased I was to finally put a name to the illness that paralysed and haunted me most of my life. I felt vindicated!!!

Endometriosis is not experienced in the same way by all women, but personally it impacted me in the following ways:
Physical impact

I would experience chronic pelvic pain coupled with a heavy menstrual flow and back pains that would numb my legs, which at times only left me with about 12 pain-free days in a month (and that was only if I was lucky). The physical pain was ten times that of a normal period and left me weak and tired more times than I can count.

The fatigue was terrible, yet I struggled to sleep at night, and waking up in the morning was a mission. I usually told people that I have insomnia when I looked a bit too tired. And I painfully convinced myself that I had a very high pain threshold, which brings me to the psychological impact that endometriosis has had on my life. 

Psychological and emotional impact 

Before I could put a name to the pain, I used to think that perhaps I am being over-dramatic, perhaps I am even imagining the painful symptoms I have been experiencing; imagine trying to convince yourself that what you are feeling is not really what you are feeling! I constantly questioned myself, and kept wondering – am I normal? Having this chronic disease is emotionally vexing, and in all honesty, I still have days where I find myself hiding my pain and tears behind my smile. 

Endometriosis and its impact on relationships
It is not easy to explain to your partner, friends, and family why you are unable to sit through a social event or gathering when you have a sudden endometriosis flare-up. 

What is even worse and more humiliating, is having to sit your partner down in the initiation phase of your relationship to explain the intricacies of menstrual health, in addition to making them understand that your situation is a bit unique and requires a bit more understanding. It is absolutely nerve-wracking – for some it could mean the loss of a romantic relationship, and for others the establishment of a deeper sense of connection. 

Being the empath that I am, I constantly worry about whether or not my condition is overburdening my loved ones. For this reason, I keep quiet about my pain, I do not mention my suffering, and I hide any tears or discomfort behind a smile. Which is wrong, especially considering the amazing support system I have in place. My family and friends offered me strength when I did not have any, and I am ever grateful for the support they provide.

Financial impact of endometriosis

One cannot talk about the meaning of life with endometriosis and not mention the financial impact that endometriosis can have on your life. Going undiagnosed for many years and going through various specialists to pinpoint the illness, cost my family a fortune. And when the medical aid savings run out, one has no choice but to dig deep into your pockets. The sad reality is that endometriosis is an expensive beast that one has to continue feeding. 

Essentially, endometriosis has decreased my quality of life and overall well-being. But I have managed to lead a semi-normal life with my condition by having a lot of faith and making use of basic self-management solutions, such as the use of the Mirena, which is a hormonal intrauterine device (IUD), taking hot baths to ease the pain, and using heated pads and painkillers.

And although the endometriosis will never be fully gone – since it is incurable – I have learned to live with it.

Take-home message

Endometriosis sufferers do not want your pity; they just need your understanding and compassion. The pain we experience is at times almost the same as having your internal organs wrapped in barbed wire. Can you imagine that? Currently, society and most front-line healthcare providers in many countries are not aware that distressing and life-altering pelvic pain is not normal; this leads to the normalisation and stigmatisation of symptoms and a significant delay in the diagnosis of endometriosis.

As a woman who has lived with this chronic disease – acknowledge the disease, continue to create awareness, and display empathy the next time a colleague, family member, friend, or stranger ‘complains’ about menstrual health-related issues. What appears to be ‘normal’ may just be another overlooked, dismissed, or misunderstood case of endometriosis. 

To all the endometriosis warriors, hopefully my intimate and now told story will create awareness. I urge you to keep fighting; your strength will become contagious, your stories will become inspiring, and your will to go on – even when your body is working against you – will make you victorious. Endometriosis does not define you!

News Archive

“You cannot find Ubuntu in a culture of dominance” – Dr Mamphela Ramphele during second Leah Tutu Gender Symposium
2015-02-28

 

From the left are: Samantha van Schalkwyk, Zanele Mbeki, Prof Pumla Gobodo-Madikizela and Dr Mamphela Ramphele.
Photo: Johan Roux

 

Video message from Mrs Leah Tutu

Session 1: Keynote address by Dr Mamphela Ramphele
Ndiyindoda! Yes, you are a man 

Session 2: Professor Robert Morrell from the University of Cape Town
South African Gender Studies: Setting the context

Session 3: How can we engage young men to act against violence against women?
Panel discussion by Lisa Vetten (Wits Institute for Social and Economic Research), Despina Learmonth (Psychology Department, University of Cape Town) and Wessel van den Berg (Sonke Gender Justice) 

Session 4: Professor Pumla Gobodo-Madikizela
Self-defence as a strategy for women’s resistance: Reflections on the work of Susan Brison
 

Engaging men to act against gender-based violence in the Southern African context.

This was the theme of the second International Leah Tutu Symposium, hosted by the Gender Initiative of Trauma, Forgiveness and Reconciliation Studies of the University of the Free State (UFS) on Tuesday 24 February 2015.

What does it mean to be man? How can men become active in the fight against gender-based violence? And when does one say: enough is enough? Questions like these set the tone as highly-respected individuals such as Dr Mamphela Ramphele, Prof Rob Morrell, Lisa Vetten and Andy Kawa took to the stage in the Odeion on the Bloemfontein Campus.

Leah Tutu
Unfortunately, Mrs Leah Tutu could not attend this year’s event, but she still managed to send sparks of wit and insight into the auditorium. In her video message, Mrs Tutu referred to the fact that our country has “consigned discriminatory legislation to the rubbish bin of the past”, but we continue to inhabit a divided society.

“We have a constitution and bill of rights that should have sounded the death knell for patriarchy. But women are unsafe across the land,” Mrs Tutu said. “Our freedom cost too much to be left out in the rain,” she urged.

Ndiyindoda! Yes, you are a man
In Dr Ramphele’s keynote address, “Ndiyindoda! Yes, you are a man”, she scrutinised the dominant masculinity model that has supported an alpha-male mentality for millennia. A mentality that celebrates dominance, power and control – where the winner takes it all. How then, can we expect our young boys to embrace the value system of a human rights culture?

“Gender equality is at the heart of our constitutional democratic values. Yet, our society continues to privilege and celebrate the alpha male as a masculinity model,” Dr Ramphele said. This dissonance can only produce conflict and violence.

We encourage our young men to be gentle, communicative, caring people who show their emotions. And when they do, what do we as women do? Do we encourage them?

“Or do we join those who call them wimps, moffies, sissies? How do we respond when they are ridiculed?” Dr Ramphele asked. Are we, as mothers, fathers and grandparents willing to socialise our children to acknowledge a diversity of masculinities as equally valid in our society?

The new man and the new woman of the 21st century need to be liberated from the conflict-ridden dominant masculinity model. They need to be able to shape their identity in line with a value system of human rights as enshrined in our constitution.

Perhaps Dr Ramphele’s message could be summed up by one sentence: You cannot find Ubuntu in a culture of dominance.

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