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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

UFS responds to concerns around high costs of higher education
2015-10-15

 

Dear Students

UFS responds to concerns around high costs of higher education

There is an understandable and shared concern among students in the country around the high costs of higher education. As you know, this also is a matter of deep concern on our campuses, which the University of the Free State (UFS) has made a priority in discussions with student leaders - and through new strategies to relieve the burden of costs on poor students and their families. In fact, in the past two weeks, the UFS leadership has again engaged students on the matter of fees in the future.

This is what we have done so far. We have maintained our position as one of the universities with the lowest tuition fees in the country. As you would have seen from recent newspaper reports on the cost of a degree at various institutions over the past five years, the UFS has had consistently low fees. This is not an accident; both the University Council and the executive leadership of the UFS is of one mind that we must offer a high quality education at minimum cost to all our students, despite the rising costs of operating a large multi-campus university with 30 000 students. Our commitment to you is to continue to keep those costs to students as low as possible, without compromising on the quality of education.

In addition, we took a decision earlier this year to become the first university to drop application fees for first-year students. We are proud of that achievement, since so many students fall at this first hurdle as they contemplate post-school education and training. We also waived registration fees for postgraduate students and now Research Master’s and PhD students can study tuition free under certain conditions. We raised more than R60 million from the private sector to enable talented students, who do not receive NSFAS funding, to complete their degree studies at the UFS. We set aside some of the university’s own funds to enable even more students to access finance for their studies. And we now have a special office set aside to counsel and assist students to apply for more than one scholarship to support their studies. The university does not follow a policy of maximizing exclusions. It has endeavoured and succeeded to turn around the majority of its potential deregistration cases. During 2015 we had 2 700 students at the risk of being de-registered, but our serious efforts resulted in only over 200 instances of exclusion we could not mitigate. As is the practice for the past few years, these students’ debt for 2015 has been reversed.

But, we do not only look for funds from outside to support our students. Last year we set up a Staff Fund to which ordinary members of the academic and support staff can contribute from their own, and sometimes very modest, salaries to enable Kovsie students to finish their degrees. We have volunteers who work on the No Student Hungry (NSH) Bursary Programme to raise funds for students who cannot afford a regular meal. We have an open line to rural and township schools to nominate poor students with good results for support by the Rector’s Fund, and some of those students are now in their final year of studies. And many of our staff support individual students in their homes and with their families, without being asked to do so. This is what we call the Human Project and it remains central to the way in which we deal with students.

We will of course continue to make representation to government, the private sector, and individuals to increase funding, especially for first-generation students, and for families where more than one student is at university. We will continue to take to the road to raise funds from companies and foundations to finance our students. We will expand on-campus opportunities for limited working hours for students who wish to earn some money to support their studies. As we have said often before, no student who passes all their courses or modules will be turned away simply because they do not have the funds to study.

The UFS discusses and agrees to fee increases with our students well in advance of the next academic year. None of these decisions are taken without the agreement of the student leadership and thus far these engagements, while tough, have always been done in good faith and with the students’ interests at heart.

It is important for you to know that, with the declining government subsidy, in real terms, and the expanding needs of our students, we will not be able to keep the university running without fees - even though this source of revenue comes mainly through scholarships and bursaries. We need to compensate staff, purchase new library books and renew journal subscriptions (which is very difficult given the low value of the Rand), upgrade computers and software, pay rates and taxes, purchase laboratory equipment, pay the water and electricity bills, expand internet services, upgrade campus security, and hire more academics to keep class sizes reasonably small. It is important for you to know that the university has managed to avoid increasing student fees as a result of much higher municipal rates. Our lecturers are not the highest paid in the country and financially we run a tight ship. We consistently achieve unqualified audits and we are known to be one of the universities that manage its NSFAS contributions with great efficiency. We do this because of our commitment to ensure that our students are able to enjoy a high quality of education on a stable campus where there is a deep respect for all campus citizens.

Despite all these efforts, the most important message we wish to communicate, is that the door remains open for continued discussion with student leaders as we continue to find ways of keeping university education open and accessible to all qualifying students. At the same time, the UFS leadership is involved in discussions with government about how to best manage the escalating cost of higher education for our dents.

Thank you for your support and understanding at this time and be assured, once again, of our commitment to students as a matter of priority to the university leadership.

Best regards

Prof Jonathan Jansen
Vice-Chancellor and Rector

University of the Free State
19 October 2015

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