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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

Media: ANC can learn a lesson from Moshoeshoe
2006-05-20


27/05/2006 20:32 - (SA) 
ANC can learn a lesson from Moshoeshoe
ON 2004, the University of the Free State turned 100 years old. As part of its centenary celebrations, the idea of the Moshoeshoe Memorial Lecture was mooted as part of another idea: to promote the study of the meaning of Moshoeshoe.

This lecture comes at a critical point in South Africa's still-new democracy. There are indications that the value of public engagement that Moshoeshoe prized highly through his lipitso [community gatherings], and now also a prized feature in our democracy, may be under serious threat. It is for this reason that I would like to dedicate this lecture to all those in our country and elsewhere who daily or weekly, or however frequently, have had the courage to express their considered opinions on pressing matters facing our society. They may be columnists, editors, commentators, artists of all kinds, academics and writers of letters to the editor, non-violent protesters with their placards and cartoonists who put a mirror in front of our eyes.

There is a remarkable story of how Moshoeshoe dealt with Mzilikazi, the aggressor who attacked Thaba Bosiu and failed. So when Mzilikazi retreated from Thaba Bosiu with a bruised ego after failing to take over the mountain, Moshoeshoe, in an unexpected turn of events, sent him cattle to return home bruised but grateful for the generosity of a victorious target of his aggression. At least he would not starve along the way. It was a devastating act of magnanimity which signalled a phenomenal role change.

"If only you had asked," Moshoeshoe seemed to be saying, "I could have given you some cattle. Have them anyway."

It was impossible for Mzilikazi not to have felt ashamed. At the same time, he could still present himself to his people as one who was so feared that even in defeat he was given cattle. At any rate, he never returned.

I look at our situation in South Africa and find that the wisdom of Moshoeshoe's method produced one of the defining moments that led to South Africa's momentous transition to democracy. Part of Nelson Mandela's legacy is precisely this: what I have called counter-intuitive leadership and the immense possibilities it offers for re-imagining whole societies.

A number of events in the past 12 months have made me wonder whether we are faced with a new situation that may have arisen. An increasing number of highly intelligent, sensitive and highly committed South Africans across the class, racial and cultural spectrum confess to feeling uncertain and vulnerable as never before since 1994. When indomitable optimists confess to having a sense of things unhinging, the misery of anxiety spreads. It must have something to do with an accumulation of events that convey the sense of impending implosion. It is the sense that events are spiralling out of control and no one among the leadership of the country seems to have a handle on things.

I should mention the one event that has dominated the national scene continuously for many months now. It is, of course, the trying events around the recent trial and acquittal of Jacob Zuma. The aftermath continues to dominate the news and public discourse. What, really, have we learnt or are learning from it all? It is probably too early to tell. Yet the drama seems far from over, promising to keep us all without relief, and in a state of anguish. It seems poised to reveal more faultlines in our national life than answers and solutions.

We need a mechanism that will affirm the different positions of the contestants validating their honesty in a way that will give the public confidence that real solutions are possible. It is this kind of openness, which never comes easily, that leads to breakthrough solutions, of the kind Moshoeshoe's wisdom symbolises.

Who will take this courageous step? What is clear is that a complex democracy like South Africa's cannot survive a single authority. Only multiple authorities within a constitutional framework have a real chance. I want to press this matter further.

Could it be that part of the problem is that we are unable to deal with the notion of "opposition". We are horrified that any of us could become "the opposition". In reality, it is time we began to anticipate the arrival of a moment when there was no longer a single [overwhelmingly] dominant political force as is currently the case. Such is the course of change. The measure of the maturity of the current political environment will be in how it can create conditions that anticipate that moment rather than ones that seek to prevent it. This is the formidable challenge of a popular post-apartheid political movement.

Can it conceptually anticipate a future when it is no longer overwhelmingly in control, in the form in which it currently is and resist, counter-intuitively, the temptation to prevent such an eventuality? Successfully resisting such an option would enable its current vision and its ultimate legacy to our country to manifest itself in different articulations of itself, which then contend for social influence.

In this way, the vision never really dies, it simply evolves into higher, more complex forms of itself. If the resulting versions are what is called "the opposition" that should not be such a bad thing - unless we want to invent another name for it. The image of flying ants going off to start other similar settlements is not so inappropriate.

I do not wish to suggest that the nuptial flights of the alliance partners are about to occur: only that it is a mark of leadership foresight to anticipate them conceptually. Any political movement that has visions of itself as a perpetual entity should look at the compelling evidence of history. Few have survived those defining moments when they should have been more elastic, and that because they were not, did not live to see the next day.

I believe we may have reached a moment not fundamentally different from the sobering, yet uplifting and vision-making, nation-building realities that led to Kempton Park in the early 1990s. The difference between then and now is that the black majority is not facing white compatriots across the negotiating table. Rather, it is facing itself: perhaps really for the first time since 1994. It is not a time for repeating old platitudes. Could we apply to ourselves the same degree of inventiveness and rigorous negotiation we displayed up to the adoption or our Constitution?

Morena Moshoeshoe faced similarly formative challenges. He seems to have been a great listener. No problem was too insignificant that it could not be addressed. He seems to have networked actively across the spectrum of society. He seems to have kept a close eye on the world beyond Lesotho, forming strong friendships and alliances, weighing his options constantly. He seems to have had patience and forbearance. He had tons of data before him before he could propose the unexpected. He tells us across the years that moments of renewal demand no less.

  • This is an editied version of the inaugural Moshoeshoe Memorial Lecture presented by Univeristy of Cape Town vice-chancellor Professor Ndebele at the University of the Free State on Thursday. Perspectives on Leadership Challenges In South Africa

 

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