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The meaning of life with endometriosis

23 March 2022 | Story Geraldine Meyers-Mashamba | Photo Supplied

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 awards degrees at autumn graduation ceremony

2009-04-28

The University of the Free State’s (UFS) autumn diploma and graduation ceremony took place this week in the Arena on the South Campus in Bloemfontein (formerly known as the Vista Campus). This arrangement has been made because of the large-scale renovations to the Callie Human Centre on the Main Campus.

Friday, 24 April 2009
Faculties of Health Sciences, Law and Theology Diploma ceremony

Law student’s achievement excels 80%
Four Law students obtained the LLB degree at this year’s autumn graduation ceremony of the University of the Free State (UFS) summa cum laude and were awarded the Moritz Bobbert Medal. They are from the left: Lezelle Olivier (80%), Albert Nell (91%) and Amanda du Toit (83%). LiFeng Chien were absent during the photo.

UFS awards degrees at autumn graduation ceremony
Today 331 students and five doctorates in the Faculties of Health Sciences, Law and Theology received their qualifications at this year’s autumn graduation ceremony of the University of the Free State (UFS). Michael Molahloe (left) and Mamokete Ntholeng both received their LL.B. degrees in the Faculty of Law.
Photo: Leonie Bolleurs

This year’s autumn graduation ceremony of the University of the Free State (UFS) was held on the South Campus. From the group of students that received their qualification from the Faculty of Law, is from the left: Janine Jonson, Anneska van der Spoel, Andrea Coetzer, and Jo-Mari Visser.
Photo: Leonie Bolleurs

Students in Nursing receive their degree
A group of students from the Faculty of Health Sciences received their B.Soc.Sc. degree at this year’s autumn graduation ceremony of the University of the Free State (UFS). At the occasion were, from the left: Ruth Beukes, Basetsana Panana, and Dipontsheng Tsolo.
Photo: Leonie Bolleurs

UFS Faculty of Health Sciences awards degrees
Liezl Swanepoel (left) and Heide van der Merwe received their BSocSC degrees at the University of the Free State’s (UFS) autumn graduation ceremony.
Photo: Leonie Bolleurs

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Thursday, 23 April 2009
Faculty of Natural and Agricultural Sciences & Chancellor’s Dinner

UFS awards unique doctorate
Dr Rodney Douglas, who had never obtained any formal undergraduate qualification, this week received a Ph.D. in Geography and Geology during the autumn graduation ceremony of the University of the Free State (UFS). The name of his thesis is “A new perspective on the geohydrological and surface processes controlling the depositional environment at the Florisbad archaeozoological site”. He had four papers published in journals that were related to his thesis. He obtained his South African Museums Association Diploma in Biology in 1988 and his M.Sc. in Environmental Biology at the University of Natal, Durban in 1992. He was accepted as a Master's degree student at that university based on research that he had conducted on, amongst others, the diets of reptiles. He has been working at the Department of Herpetology at the National Museum, Bloemfontein since 1984, where he holds the post of Principal Museum Scientist and Head of Department.
Photo: Leonie Bolleurs

Chancellor’s Dinner: UFS honours doctoral students
Last night, the University of the Free State (UFS) honoured students who had received their Ph.D. degrees at the autumn graduation ceremony this past week, at the Chancellor’s Dinner. A total of 25 doctorates were awarded during the respective ceremonies. Attending the occasion were, from the left: Dr Annemarie Kühn, Ph.D. in Chemistry, Prof. Jeanet Conradie, Department of Chemistry at the UFS and Dr Kühn’s promoter, Prof. Teuns Verschoor, Acting Rector of the UFS, Prof. Corene de Wet, Department of Comparative Education and Education Management at the UFS, and Dr Mafu Rakometsi, Chief Executive Officer of Umalusi and former head of the Free State Department of Education who received a Ph.D. in History. Prof. De Wet is Dr Rakometsi's co-promoter and the late Prof. Leo Barnard, former Head of the Department of History at the UFS, who passed away at the beginning of April 2009, was his promoter.
Photo: Leonie Bolleurs

Mrs Annemarie Kilian, Mr Willem Kilian (BSc. Hons) and Prof Stephanus Kilian
Photo: Mangaliso Radebe

Mr Jaco van der Merwe, Mr Renico Pretorius and Mr Rion Terblanche (all BSc. Quantity Survying)
Photo: Mangaliso Radebe

Ms Mamakoanyane Amelia Shata (BSc. Genetics and BSc. Hons. Plant Molecular Biology) and Mrs Maente Adelinah Shata.
Photo: Mangaliso Radebe

Mr Maurice Ambrose and Mr Owen Monk (both BSc. Quantity Survying).
Photo: Mangaliso Radebe

Ms Tobeka Mehlomekhulu (Lecturer: Department of Geography), Mr Neo Mokgosi (BSc. Hons. Genetics) and Ms Nwabisa Mehlomekhulu (BSc. Hons. Food Science).
Photo: Mangaliso Radebe

Mr John Mdane, Mr Fana Mdane (BSc. Information Technology) and Mrs Agnes Mdane
Photo: Mangaliso Radebe

Mr Kevin Vermaak (BSc. Hons. Geohydrology) and Ms Michelle Steenkamp (BSc. Hons. Geology).
Photo: Mangaliso Radebe

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21 April 2009
Faculty of Economic and Management Sciences

Prof. Magda Fourie's daughter graduates
Nadia Fourie, daughter of Prof. Magda Fourie, former Vice-Rector: Academic Planning at the UFS and now Vice-Rector: Teaching at Stellenbosch University, received the B.Com. Law degree.
Photo: Lacea Loader

724 degrees were awarded during the ceremony of the Faculty of Economic and Management Sciences. Here are, from the left: Simon Serutla, B.Com. Accounting, Lourencia Hamuaka, B.Com. Honours in Financial Economics and Investment Management, Sunet Opperman, B. Accounting, and Yolandi Greyling, B. Accounting.
Photo: Lacea Loader

Students in the Faculty of Economic and Management Sciences graduated this week during the University of the Free State's (UFS) autumn graduation ceremony. Altogether 724 degrees were conferred. Here are, from the left: Marie-Louise Lombard, B.Com. Law, Adriaan van der Merwe, B.Com. Law and member of the Student Representative Council (Legal and Constitutional Affairs), Basanio Ncike, B.Com. Economics, and Richard Schooling, B.Com. Banking.
Photo: Lacea Loader

Center for Accounting honours top achievers
The Centre for Accounting at the University of the Free State (UFS) honoured the top ten students in the third-year B.Com. and B.Com. Hons. programmes respectively during this week's autumn graduation ceremony. Here are, from the left: Prof. Ronell Britz, Chairperson of the centre, Nils Kotze, first place in the B.Com. third-year group, and Madri Victor, first place in the B.Com. Hons. group; back: Prof. Hentie van Wyk, Programme Director: Accountant Training.
Photo: Stephen Collett

Accounting firms in Free State help with recognition of top achievers
Accounting firms in the Free State have contributed to a fund at the University of the Free State’s (UFS) Centre for Accounting to give recognition to top achievers in the third-year programme for the B.Com. and B.Com Hons. degrees respectively this week. It is evidence of the good relationship that exists between the Centre and the South African Institute for Chartered Accountants (SAICA), Free State. Here, from the left, are: Mr Pieter Clase, CoetzeeSmit Chartered Accountants, Mr Oswald Wentworth, KPMG, Mr Ettienne van Niekerk, PricewaterhouseCoopers, Herman Leach, Gobodo Inc. Chartered Accountants, and Mr Stefan Strydom, Havenga, Rossouw & Viljoen; front: Mr Ian Smit, Enslins Bloemfontein, Ms Thelma Crossman, Mazars, and Ms Daphline O'Brien, Ernst & Young.
Photo: Stephen Collett

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20 April 2009
Faculty of Education, Faculty of the Humanities.

CHESD awards 15 masters degrees
A group of 15 students received the Structured M.A. (Higher Education Studies) of the Centre for Higher Education Studies and Development (CHESD) at this year’s autumn graduation ceremony of the University of the Free State (UFS). This is the biggest group in the centre's history to be awarded master’s degrees, while four of the students received distinctions. Also of interest is that six of the 15 students already have doctoral degrees. At the occasion were, from the left: Dr Dipane Hlalele, Qwaqwa Campus, Ms Liesl Hoare, Central Univeristy of Technology, Welkom Campus (best achiever), and Dr Fanus van Tonder, Programme Director: Higher Education Studies and Research, CHESD. Ms Hoare received the Deans medal in the Faculty of the Humanities as the best master’s graduate student at the graduation ceremony. At the faculty’s prize function she also received the Kovsie-Alumni Trust award as the best M.A student in the faculty. She also received the CHESD Prize for the best achievement in the Structured M.A. (Higher Education Studies).
Photo: Leonie Bolleurs

UFS awards degrees at autumn graduation ceremony
Five hundred and eighty six degrees and nine doctorates were awarded this week during this year's autumn graduation ceremony on the South Campus of the University of the Free State (UFS) to students in the Faculty of the Humanities. At the occasion were, from the left: Nicola Bekker, Madré van der Merwe and Esté Scholtz. All three the ladies received the qualification B.A. Language Practice.
Photo: Lacea Loader

This year’s autumn graduation ceremony of the University of the Free State (UFS) is held on the South Campus in Bloemfontein. Today a group of students from the Programme: Governance and Political Transformation in the Faculty of the Humanities received their qualification. From the left, front are: Dr Tania Coetzee, Head of the Programme: Governance and Political Transformation, and Mr Itumeleng Liba, Chief Operation Officer at CENTLEC; back: Mr Kennett Sinclair, Vice-Chairperson of COPE in the Northern Cape, Ms Nicole Joannou, Goldfields Business and Catering, and Mr Tembeni Lobe from Bloemfontein.
Photo: Lacea Loader

Some of the students who received their qualifications during this week's graduation ceremony of the Faculty of the Humanities were, from the left: Shu-Jung Chan, B.Mus. Hons., Brian Gxavu, B.Mus., and Mpolokeng Lepote, B.A. Media Studies.
Photo: Lacea Loader

UFS’s CHESD awards doctoral degree
Ms Mardi Delport (middle), Assistant Director: Media and Communications at the Central University of Technology received her Doctoral degree at this year’s autumn graduation ceremony of the University of the Free State (UFS). The title of her thesis is: “An internal communication model for the Central University of Technology, Free State as a multi-campus institution”. With her are her promoter Prof. Driekie Hay (left), Vice-Rector: Academic Planning, and her co-promoter, Prof. Annette Wilkinson (right) from the Centre for Higher Education Studies and Development (CHESD) at the UFS.
Photo: Leonie Bolleurs

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