International Women’s Day is marked every year on the 8th March to celebrate the social, economic, cultural and political achievements of women. It also brings attention to critical issues facing women such as gender equality, reproductive rights or gender-based violence. The theme for 2022 is Break The Bias and today I would like to celebrate a special woman who has been breaking the bias since she was diagnosed with endometriosis in 2008. First, by working tirelessly to raise awareness for a chronic disease that is so misunderstood even though, according to WHO, it affects 10% of women. And second, even with this diagnosis, participating in several gruelling races including Comrades 2019 (90km), Two Oceans 2019 (56km), Sanlam Cape Town Marathon and Kosmos3in1 (73km). Through all her challenges, she has shown incredible strength and resilience. She’s pushed through the lowest of lows whilst still finding time to empower women around her. She tries to stay positive but is not scared to talk openly about her struggles. From South Africa, her name is Khanyisa, and she is my Woman of the Year.
Let’s start with a question I think many people are confused about. What is endometriosis? Endometriosis can be difficult to explain, my own doctor referred me to Google when I first got diagnosed. But the medical definition of Endometriosis is “tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis.”
What are some of the signs and symptoms? Symptoms differ from person to person. My main symptoms were irregular and very painful periods. Other symptoms include:
- Excessive bleeding
- Pain with bowel movements or urination
- Pain with intercourse
- Fatigue, diarrhea, constipation, bloating or nausea, especially during menstrual periods.
It was actually through your social media platform that I learnt just how misunderstood endometriosis is and that it is often misdiagnosed. What did it take for you to get a correct diagnosis? Statistically, it takes an average of 10 years for a person to get diagnosed correctly for endometriosis. I personally went through 8 years of being told it was either IBS, appendicitis, fibroids, or being told “it’s just period pains, get over it”. I was practically either at a GP or an emergency room monthly with excruciating pain. When I moved to Joburg I found a new GP. After she noticed that I was at her practice almost every month for pain management, she said it’s not normal and she thinks I might have something called endometriosis and referred me to a gynaecologist. That was the first time I heard the term.
What is the treatment for endometriosis? And is there a cure? Unfortunately, there is no cure for endometriosis. I tried everything from contraceptives, fertility treatment and had five laparoscopic surgeries (between 2008 and 2014) with different gynaecologists who used laser to burn off the endometriosis, but it always grew back within months after surgery! I found relief when I was finally referred to an endometriosis specialist in 2015. It turns out I had stage 4 deep-infiltrated endometriosis on my bowel and rectum, hence the laser surgeries were not effective. The specialist performed what is called excision surgery. Excision surgery is whereby the surgeons can excise the entire endometriosis lesion — including its root, which makes this type of surgery more effective than laser. Most gynaecologists are not equipped to perform excision hence going to an endometriosis specialist is best.
What have been your greatest challenges living with endometriosis? Just being in pain, constantly! I must plan my life around endometriosis, so on the days I feel great I make sure I get a lot done. But that doesn’t always work because endometriosis is so unpredictable, I can wake up feeling fine then be in excruciating pain by midday. This in turn makes me unreliable as I may need to cancel any plans I might have.
What are the biggest misconceptions people have of endometriosis? Or even the most annoying things people say? The list is endless! I think because most people link endometriosis to periods it gets looked down on like its not such a bad thing. But it was listed as the most painful thing a human can experience after a heart attack. Another common question I get is “why not just remove your womb?” The problem with that is I have endometriosis in other areas like the rectum and bowel, so removing my womb is not a solution. And my favourite is being told to “just have a baby, it will cure you”. Firstly, thanks to endometriosis I can’t have a baby and secondly I know many fellow endo sisters with babies who are still suffering from pain.
What are some of the things you are doing to increase awareness of endometriosis? I raise awareness at every chance I get. I run and hike in a yellow tutu so that I can start a conversation about Endo during an event. During endo awareness month (March) I use my social media platforms to share as many facts about endometriosis as possible. Annually I partake in a race called RAC Tough One where I organize as many people as possible to run in a yellow tutu. That race has been so successful such that now most runners refer to it as the ‘’Endo Race”.
That’s amazing – let’s talk more about your running. When and how did you start? I started running in 2010 as a means to lose weight ha ha! I then got hooked on it and the next thing I know I’m training for my first marathon! I don’t remember how the idea to run in a yellow tutu came about but I know I needed a way to raise awareness while running. My running journey got halted in 2011 when I was hit by a drunk driver while training for my first marathon. I broke my leg in 3 different places and I honestly thought the universe must hate me! Imagine a broken leg on top of dealing with endometriosis! I was out of running for 4 years. I fell into depression. In 2016 I decided to take my life back so on the same month I decided to have the metal plates in my leg removed AND I had my biggest endometriosis surgery (the excision) done. It was a drastic decision; I was out for 3 months but it’s what I needed to do to get my life back.
Wow, I cannot even begin to imagine what those years must have been like for you… How has running helped you in your endo journey? Running is my therapy. I was diagnosed with Endometriosis related depression. I use running to deal with depression. I may be feeling like death, but I know even the shortest and slowest run will put me in a better space mentally.
And what has running taught you about yourself? Training for Comrades was the most challenging experience ever! I had to constantly dig deep, and I was tempted to quit a few times. I had weeks where I could not train because endometriosis was acting up so bad. We would be 2km into a run with my training partner and I’d feel like my insides were about to explode and we would have to stop running and walk back. Finishing Comrades showed me just how strong and resilient I am. I need to send a special shout-out to my training partner Channelle van Wyk and my biokinetic Anca Wessels. Comrades 2019 wouldn’t have happened without them.
What are some of the most memorable races you’ve done and why? Two races come to mind; Soweto Marathon because it was my first race back after the accident and Comrades 2019 because I honestly never thought I’d be able to run and finish Comrades with the combination of leg injury and endometriosis.
This being Endometriosis Awareness Month, what can people do to actively support the cause as well? As part of raising awareness, I collect sanitary pads for under privileged schoolgirls. When I hand out the pads I get to talk to young girls about endometriosis and it’s been so rewarding providing answers to a girl or young woman who thought she was alone in her pain. So what others can do is to please support my pads collection initiatives. I’m also in the process of setting up a non-profit organization. A consultation with an endo specialist starts from R2000 cash and this is not affordable for everyone. I want to use the non-profit to raise funds for women who cannot afford these fees.
Thank you Khanyisa for sharing your story and for so graciously agreeing to do this on my platform. I am so proud to call you my Woman of the Year. I’m in awe of all you have done to promote awareness for endometriosis even as you navigate its physical and mental challenges. For anyone, who would like to connect with Khanyisa or to make a donation to this important cause, this is her Instagram.
I’m joining Kooky Runner and Zenaida on their link up, Tuesday Topics. I’m also joining the Runner’s Roundup with Mile By Mile, Coach Debbie Runs, Confessions of a Mother Runner, Runs with Pugs, and Laura Norris Running. Be sure to read their blogs and catch up with other runners from around the world.