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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

Dr Francois Deacon appears in international film, Last of the Longnecks, due to research on giraffes
2017-04-04

Description: Giraffe research read more  Tags: Giraffe research read more

Dr Francois Deacon was invited by the producer of Last
of the Longnecks
to be part of a panel handling a question-
and-answer-session about the film.
Photo: Supplied

A great honour was bestowed on a researcher at the University of the Free State (UFS) when he was invited to the preview of the documentary film, Last of the Longnecks. Dr Francois Deacon, lecturer and researcher in the Department of Animal, Wildlife and Grassland Sciences at the UFS, who also has a role in the film, attended the preview at the Carnegie Institution for Science’s Smithsonian National Museum in Washington DC, in the US, in March this year. The preview formed part of the DC Environmental Film Festival.

The Environmental Film Festival in the US capital is the world’s leading showcase of films with an environmental theme and which aims to improve the public’s understanding of the environment through the power of film. During the festival, the largest such festival in the US, more than 150 films were shown to an audience of 30 000 plus. 

Dr Deacon was invited by the producer of Last of the Longnecks to be part of a panel handling a question-and-answer-session about the film directly after the show. He described it as the greatest moment of his life. 

Role in the film Last of the Longnecks

“My role in the film was as the researcher studying giraffes in their natural habitat in order to understand them better, so that we may better protect them, and be able to provide better education on the problem in Africa,” says Dr Deacon. 

“Together with Prof Nico Smit, also from the UFS Department of Animal, Wildlife and Grassland Sciences, Hennie Butler from the Department of Zoology, and Martin Haupt from Africa Wildlife Tracking, we were the first researchers in the world to equip giraffes with GPS collars and to conduct research on this initiative,” he says. This ground-breaking research has attracted international media attention to Dr Deacon and Prof Smit. 

“Satellite tracking is proving to be extremely valuable in the wildlife environment. The unit is based on a mobile global two-way communication platform, utilising two-way data satellite communication, complete with GPS systems.

“It allows us to track animals day and night, while we monitor their movements remotely from a computer over a period of a few years. These systems make the efficient control and monitoring of wildlife in all weather conditions and in near-to-real time possible. We can even communicate with the animals, calling up their positions or changing the tracking schedules,” says Dr Deacon.

The collars, which have been designed to follow giraffes, enable researchers to obtain and apply highly accurate data in order to conduct research. Data can be analysed to determine territory, distribution or habitat preference for any particular species.

Over a period of three years (2014-2016), the Last of the Longnecks team from Iniosante LLC captured on film how Dr Deacon and his team used the GPS collars in Africa to collect data and conduct research on the animals.

“With our research, which aims to understand why giraffes are becoming extinct in Africa, we are looking at the animal in its habitat but not only the animal on its own. If the habitat of these animals is lost, they will be lost as well. Therefore, our focus is on conservation and better understanding the habitat. The giraffe is only a tool to better understand the habitat problem,” says Dr Deacon. 

Since the beginning of his research Dr Deacon and his team have had six new collar designs, with animals in four different reserves being equipped with the collars. The collars use the best technology available in the world and make it possible to determine how giraffes communicate over long distances, and how their sleep patterns function. Physiological and biological focus is placed on the giraffe’s stress levels, natural hormone cycles, and milk quality in cows. 

Description: Giraffe 2017 Tags: Giraffe 2017

Photo: Supplied

Experience at the film festival

“Absolutely amazing. Totally beyond our frame of reference as South Africans.” This is how Dr Deacon describes his experience of the three days in Washington DC during the film festival.

“It was an absolute honour to be part of the global preview of the film and to be able to work with Ashley Davison, the director of the film, and his team. I am just a rural farm boy who dreams big, and now this dream is known worldwide!” he says. 

The film, which will be launched in April, will be screened in South Africa on the National Geographic channel in May 2017. Meanwhile, the film will also be shown at eight other film festivals in the US. 

Work will start on a follow-up documentary in October and Dr Deacon is excited about the prospect. A mobile X-ray machine will be available from October. Internal sonars could also be performed on each of the animals. Researchers from around the world will form part of the team which will be led and co-ordinated by Dr Deacon and his co-workers at the UFS.

Former articles: 

18 Nov 2016: http://www.ufs.ac.za/templates/news-archive-item?news=7964 
23 August 2016: http://www.ufs.ac.za/templates/news-archive-item?news=7856 
9 March 2016:Giraffe research broadcast on National Geographic channel
18 Sept 2015 Researchers reach out across continents in giraffe research
29 May 2015: Researchers international leaders in satellite tracking in the wildlife environment

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