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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

Institutional research culture a precondition for research capacity building and excellence
2004-11-16

A lecture presented by Dr. Andrew M. Kaniki at the University of the Free State Recognition Function for research excellence

16 November 2004
The Vice Chancellor, Prof. Frederick Fourie
Deputy Vice Chancellors, Deans
Awardees
Colleagues and ladies and gentlemen

It is a great pleasure to be here at the University of the Free State. I am particularly honoured to have been invited to present this lecture at the First Annual Recognition Function for Research Excellence to honour researchers who have excelled in their respective fields of expertise. I would like to sincerely thank the office of the Director of Research and Development (Professor Swanepol), and in particular Mr. Aldo Stroebel for facilitating the invitation to this celebration.

I would like to congratulate you (the UFS) for institutionalizing “celebration of research excellence”, which as I will argue in this lecture is one of the key characteristics of institutional research culture that supports research capacity building and sustains research excellence.

Allow me to also take this opportunity to congratulate the University of the Free State for clocking 100 years of existence.

Ahmed Bawa and Johan Mouton (2000) in their chapter entitled Research, in the book: Transformation in higher education: global pressures and local realities in South Africa (ed. N. Cloete et. al Pretoria: CHET. 296-333) have argued that “…the sources of productivity and competitiveness [in the knowledge society and global economy] are increasingly dependent on [quality] knowledge and information being applied to productivity”. The quality knowledge they refer to here is research output or research products and the research process, which (research) as defined by the [OECD] Frascati Manual (2002: 30) is:

“…creative work undertaken on a systematic basis in order to increase the stock of knowledge, including knowledge of man, culture and society, and the use of this stock of knowledge to devise new applications”

The South African Government has set itself the objective of transforming South Africa into a knowledge society that competes effectively in the global system. A knowledge society requires appropriate numbers of educated and skilled people to create quality new knowledge and to translate the knowledge in innovative ways. To this end a number of policies and strategies like the Human Resource Development [HRD] Strategy for South Africa, the National Plan for Higher Education (NPHE) and the South Africa’s Research and Development [R&D] Strategy, have highlighted human resource development and the concomitant scarce skills development as critical for wealth creation in the context of globalization. The key mission of the HRD Strategy for instance is:

To maximize the potential of the people of South Africa, through the acquisition of knowledge and skills, to work productively and competitively in order to achieve a rising quality of life for all, and to set in place an operational plan, together with the necessary institutional arrangements, to achieve this.

The R&D Strategy emphasizes that maximum effort must be exerted to train the necessary numbers of our people in all fields required for development, running and management of modern economies. Higher education institutions like the University of the Free State have a key role to play in this process, because whatever form or shape a university takes, it is expected to conduct research (quality research); teach (quality teaching – and good graduates); and contribute to the development of its community! Thus the NPHE states that the role of higher education in a knowledge-driven world is threefold:

Human resource development;

High-level skills training and

Production, acquisition and application of knowledge.

Quality research output or knowledge which as argued is critical in determining the degree of competitiveness of a country in the knowledge economy is dependent upon quality research (process). Both the process of producing quality research and its utilization cannot and does not happen in a vacuum. It requires an environment that facilitates the production of new knowledge, its utilization and renewal. It requires skilled persons that can produce new knowledge and facilitate the production of new skills for quality knowledge production. Such an environment or in essence a university must have the culture that supports research activity. Institution research culture (that is a conducive and enabling institutional research culture) is a precondition to research capacity building. Without an institutional research culture that facilitates the development and nurturing of new young researchers it is difficult, if not impossible for a university to effectively and efficiently generate new and more quality researchers. Institutional research culture is also necessary to sustain quality research and quality research output or research excellence. It facilitates the development and sustenance of the institutional and people capacities required to do research produce quality research and generally attain research excellence!

We do recognize that the patterns of information and knowledge seeking, and knowledge generation vary among field or disciplines. For example, we know that in the humanities knowledge workers often work individually, and not as collaboratively as do those of the sciences, they all however, require supportive environments – institutional research culture to achieve and sustain research excellence. An institution does not simply attain a supportive research culture, but as Patricia Clements (English Department, University of Alberta, Edmonton) in her presentation Growing a research culture argues, research culture has to be grown [and maintained]. It unifies all natural and engineering scientists; medical researchers, humanists, and social scientists.

I therefore am of the view that Institutional Research Culture is critical to research capacity building and research excellence. I therefore want to spend a few minutes looking at the characteristics of research culture. To be effective, institutional research culture has grown and sustained not only at the institutional level, but also at the faculty, school and departmental levels of any university.

What is Research Culture?

In the process of researching on institutional research culture I identified several characteristics. Many of these overlap in some way. I want to deal with some of these characteristics; some in a little more detail while others simply cursorily. In the process what we should be asking ourselves is the extent to which an institution, like the University of the Free State, and its faculties, individually and severally, is growing and or sustaining this culture.

Institutional Research Strategy: As a plan of action or guide for a course of action, the institutional research strategy must spell out research goals that a university wants to achieve. It must be a prescription of what the university needs to be done with respect to research. As a strategy it is neither an independent activity nor an end in itself, but a component part and operationalization of the university policy or mission. ( Related to this is the Establishment of Institutional research policies)

Includes and makes public the targets, e.g. achieve so many rated scientists and make sure that every year we have so many SAPSE publications. That way people keep an eye on research agendas of the university and nation.

The UFS is obviously on its way, having launched its own Research strategy (A Strategic framework for the development of research at the University of the Free Sate. August 2003). Note that this strategy refers specifically to the “Culture of research” Fig 1

A set of administrative practices to support and encourage research. Patricia Clements (English Department, University of Alberta, Edmonton) in her presentation Growing a research culture argues that that research activity and output within the her Faculty (Arts) were very low and, in spite of the numbers of staff, with no Associate Dean for Research in the Faculty as though they had accepted that research belonged to Medicine and Science and Engineering, and teaching, separated from inquiry, belonged to the Arts. With the change in the thinking about research and development of research culture, it became clear that there was a major role for research support in a faculty her size (now about 360 full time continuing academic staff). The faculty developed a support system for research and began to address the SSHRC issues.

Reduce the bureaucracy system and micromanagement of research! This however, also implies that there is capacity and policies and procedure to manage and guide research processes

Establishment of Intellectual Property regulations and assistance

Research ethics policy and safeguarding by research administration

Focused, applied and suitable nature of the delivery mode (an institution open to new methodologies for conducting research

Programmes suited both full and part-time study particularly at graduate level (Mainly at Faculty/school and department level, and depending on what’s manageable)

Hiring senior academics to engage in, teach on and supervise postgraduate students to facilitate exchange of and transfer ideas and most importantly mentorship especially in view of declining numbers of researchers in particular fields

Quality instruction and facilitation in learning about research processes

A high retention rate of students maintained by the supportive and challenging learning environment and the use of online facilities to support collaboration and in-class learning

Availability of research grants: and awareness of sourcing funds from external sources like the National Research Foundation; Water Research Commission; Medical Research Council, private philanthropies and others outside the country. For example an institution should be able to assess how much of the slice the available funds (NRF etc) its able acquire and possibly top slice from institutional budget.

Adequacy of the financial reward system to encourage university staff members to do research (General Celebration of achievement for research excellence and achievement. This ranges form Annual reports mention; celebratory dinner. At Alberta researchers were given lapels. I don’t know of any academic who do not feel a sense of achievement to get into print or recognised. Access to research facilities within and outside the institution

Provision of infrastructure to support university-based research (e.g. equipment, admin support, etc.) – but also awareness of publicly funded and available research facilities and equipment!

Internet connectivity and changes in the bandwidth of the internet to download articles

Subscription to related bodies by the library so that researcher can download articles

Facilities and resources to attend international conferences to keep one updated

Number of visiting professors/speakers targeting senior scholars and invite them to lunch to ask them to participate and to encourage their best graduate students to do so within the institution and across institutions

Research training seminars for research students including young academics

Participation of staff/students in delivering research papers to national and international conferences

Establishment of research groups to provide interaction frameworks to achieve critical mass of research-active staff

Facilitation for more research time: Targeting new scholars and giving them reduced teaching loads in their first year or two for the purpose of developing their research programs. For the purpose of helping new colleagues to see the shape of South African research support, personalizing it, and creating research community

Take research to the community and argue its necessity, and utility

And, finally celebrating excellence. We must recognize achievement - parties and public recognition for colleagues who achieve splendid things in their research.

In conclusion, I want to reemphasize that research culture has to be grown it does not simply exist in an institution. If it is grown it needs to be nourished, nurtured and sustained. An institution cannot simply leave on borrowed reputation and expect to remain research excellent. It is on this basis that instruments like the National Research Foundation rating system recognizes excellence within a given period of time and not necessarily for a life time! This it is believed encourages continued research excellence.

THANK YOU and best wishes

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