By Imaan Moosa
Edited by Yumna Bodiat
We spoke to Sameerah Butler about what it is like to live with endometriosis.
Thirty-year-old commercial law attorney sums up endometriosis in one word: pain; causing extreme discomfort in patients.
When Sameerah Butler was 13-years-old she began experiencing symptoms of the medical condition but it was only at 19-years-old that she was diagnosed by her gynaecologist.
Endometriosis is a condition where the presence of tissue that normally lines the inside of the uterus – the endometrium - grows outside the uterus, such as the ovaries, fallopian tubes and intestines. The most common symptoms are menstrual irregularities and pain.
My understanding of endometriosis is, well… pain. Endometriosis causes a lot of pain; dull, intense, sharp, debilitating and burning pain which lasts for almost seven to 10 days. It varies from woman to woman and the symptoms and intensity of pain may also vary.”
Health practitioners and medical experts have not yet found a cure for endometriosis. However, the condition can be treated with hormones and excision surgery. Butler says she was prescribed birth control medication which helped curb symptoms such as nausea and vomiting, but it did little to decrease pain.
When Butler turned 20, she was admitted for a laparoscopic procedure to relieve the pain.
Laparoscopy is the most common procedure used to diagnose and remove mild to moderate endometriosis. The surgeon inserts a lighted viewing instrument called a laparoscope through a small incision in the abdomen under the belly button. A cannula is inserted into the opening to inflate the abdomen with carbon dioxide or nitrous oxide. This enables the surgeon to see inside of the abdomen.
Thereafter, a laparoscope is inserted with a camera on top to allow the surgeon to see the internal organs. When endometriosis or scar tissue is found, the surgeon removes it via ablation (lasering the affected endometrial tissue) or excision. Butler says the procedure takes about 45 minutes to an hour.
She has had two endometrial ablation procedures – at 20-years-old and most recently at 27-years-old.
None have proven to be effective and if anything – I honestly feel like the endometrial tissue grew back more aggressively. Yes, it grows back!
Despite the ineffectiveness of treatment, Butler says she maintains a “healthy and positive” toward her body. She feels sore a lot but she strongly opposes labelling herself as someone with a chronic illness.
Having endometriosis is challenging in more ways than one. I’ve had to take off work a lot and I am often faced with a nonchalant attitude from others when I speak about my pain, because it is (basically) ‘the same old story every month’.
There are months when I cry and pray for hours on end hoping the pain will subside. I honestly cannot put into words the torment of the physical pain that I undergo every single month.
Butler says she plans her life around her menstrual cycle, taking a day or two off work monthly.
In addition to the physical effects of pain, she feels down and agitated because she cannot understand what is going on with her body. She sometimes feels angry and defeated because “I know that there is nothing that I can do and I will have to undergo this torment month after month without any relief”.
Her support system of family and friends help her to understand that endometriosis is more than ‘period pain’. She wishes more people were educated on the topic to realise and understand the emotional effects it has on patients.
When asked about her future and the possibility of falling pregnant, she says she is not worried because she believes that “the Almighty will allow it to happen it is meant to happen and if it is meant to happen”.
Almost every woman I know who suffers with endometriosis has conceived healthy babies. I hope to be happily married with one or two kids, hopefully less ‘sore’, more relaxed and carefree.
A note from Sameerah Butler:
YOU ARE STRONG AND YOU ARE NOT ALONE! What we go through is not normal and you have to do whatever you need to do to make yourself feel happier, comfortable and less ill. If it means you need to quit your job to stay home so you can feel better, then do it! Try to manage your stress levels as best as you can. Open yourself to trying new treatments because although they may not be 100% effective, they may help to relieve some of your symptoms. Communicate effectively with those around you about the condition and the impact it may have on your physical and/or mental wellbeing. Never be afraid to express how you truly feel. Don’t allow anyone to label you as ‘sickly’. You are not sickly. Invest in a nutritionist.
More on Sameerah:
What is your profession? I have a BA (LLB) obtained from the University of Johannesburg.
Who are the women you admire and why do you admire them? My mum – the biggest role model in my life and my best friend. She is resilient, beautiful, very hard working, extremely supportive and non-judgmental. My late granny for her loving and kind heart. My cousins and best friends – for their resilience and support, and Meghan Markle because she is the epitome of grace.
What are some of your favourite hobbies, interests and/or passions? I enjoy cooking and baking. I love animals and everything related to the beauty and fashion industry. I enjoy travelling and spending as much time as possible with my family and close friends.
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