Nearly 10 per cent of women experience endometriosis worldwide – you’re not alone if you have this disorder! Endometriosis occurs when tissue similar to the lining of the uterus (the endometrium) grows outside the uterine cavity. The tissue growth can form on the ovaries, fallopian tubes, bowel and tissues lining the pelvis. This condition can cause chronic irritation and extreme pain, and infertility.
In a conversation with Fatima Hoosain from Upswing SA; an endo-sister and all-round stunning human being, she opens up about her real-life journey with endometriosis: “I think the best way to describe what it’s like living with endometriosis is like having bribed wire wrapped around your pelvis down around your thighs all the time. It’s extremely debilitating, and if you decide to use the treatments currently available. it’s almost like you’re just numbing everything. The barbed wire is still there, you know it’s there, you can somewhat feel it, but you’re also just numb all over.”
What are the symptoms?
Some women experience moderate to severe or mild symptoms – it is important to note that the severity of your pain does not indicate the degree or stage of the condition. Some of the symptoms experienced include, but are not limited to:
- pelvic pain, pain in the lower abdomen before and during periods
- painful periods
- heavy menstrual flows or bleeding between periods
Fatima says “nausea (and) IBS are the two I’d highlight most. The rest kind of just fell into my daily life…Other than that, it was and sometimes still is, that crippling pelvic pain.” Some women experience no symptoms at all – therefore, it is vital to have regular and honest check-ups with your GP or gynaecologist to monitor any changes and request guidance.
Is there a cure?
“…to answer bluntly – no – there is no cure for it. There are procedures and treatment plans you can follow to manage it and reduce it, but it is often referred to as chronic.” When left untreated, the symptoms of endometriosis can hinder women from leading a full life. Treatment can range from over-the-counter pain medications to a total hysterectomy (as a last resort option).
What led to your diagnosis?
Fatima shares: for me, it was very simple. Since I started menstruating, I experienced dysmenorrhea which is extreme period cramps – and I mean extreme. Before and during my periods, I could not walk because of the pain. As I got older, the build-up of endometrium tissue increased, which I later discovered wrapped around my intestines and kidneys As that tissue built up, the pain became more intense and didn’t go away after my period as it normally would for others. The inflammation got so bad that it started damaging my intestines, and my nutrition absorption was heavily compromised – it became life-threatening. I became so malnourished that it compromised my mental stability – all I wanted was for the pain to stop. Unfortunately, this led to an overdose of medication which landed me in the ICU for observation.
It was at that point when I realised I needed help.
I went to see a gynaecologist who suggested the idea of endometriosis, but they were not comfortable performing the surgery that would accurately confirm the diagnosis. Instead, I was placed on birth control pills and the inflammation was monitored. The treatment was not effective and my life force was dimming. I was so malnourished and surviving on painkillers – I could not even lift my head. My parents rushed me to the hospital to be seen by my gynaecologist. I don’t remember much of the first two days as I was too weak to stay awake and caught glimpses of the nurses put me on an IV drip to heal me back to life. After multiple scans, blood tests, consultations with specialists, the doctors concluded that I had a concerning amount of inflammation in my pelvic area and the gynaecologist finally diagnosed me with endometriosis.
Endometriosis vs Self Confidence
Of the symptoms that can be managed, chronic pain can prove to be very difficult for many women. Mental health issues are not uncommon for women doing their best to manage their endometriosis. “You discover new things about your body that you can choose to either love or reject. The way I perceive my body psychologically affects my physical health,” Fatima further adds, “Learning to understand how my body works, the functions and processes that take place for me to simply be has made me appreciate and allow my body to do what it needs to as I try my best to support it and look after it.”
Fatima also explains that through her bittersweet relationship with her period, she has prioritized her body’s needs over societal expectations, “loving myself extra during the times of pain and celebrating the cycle body goes through to cleanse itself out of the old to make space for the new.”
You are not alone – it is highly recommended to reach out to support groups online or fellow sisters working through their endometriosis journey. Fatima adds that Endo-Warriors South Africa has been a huge support structure in her life, “It has taught me how common this condition is, and I would recommend you (to) discuss your period with friends, family or anyone willing to listen. The more people (who) know about it, the easier it is for us to receive support.”
Where are you in your endo-journey?
“I’ve moved over from recovery phase into lifestyle management phase. It wasn’t an easy adjustment, emotionally, as I have to plan my work schedules around my cycle which is difficult when you have to accommodate your responsibilities. The world doesn’t stop for you, and that is something I had to accept and work with. Make lemonade out of lemons kind of thinking.” says Fatima.
Endometriosis is a chronic condition with no cure, with no scientifically proven cause (yet) – but with various treatment options available, women can own every day!
What are your thoughts on the shame associated with periods, menstrual health and female reproductive organs?
FATIMA: It’s ridiculous considering that’s the only process where 100 per cent of the population has been brought into the world. Hence, the reproductive organs should not be such a touchy subject as it is the essence of human life. If we can speak about heart failure, lung disease, kidney stones, we should be able to openly speak about the functions of the uterus, endometrium, etc. just as easily. After getting sick I have tried my best to speak as frankly as possible about my health conditions, in the same way, I would if I had experienced a heart attack. I remember during my first week back to school after being discharged from hospital – in a Biology lesson we had reached the chapter of the reproductive system. Our male Bio teacher began describing a very vague version of endometriosis to a classroom full of girls. I boldly raised my hand and mentioned that I had this health condition and would be willing to share my experiences. If any of my classmates had a similar experience or needed some clarity, I wanted to talk about it – however, I was immediately shut down and told not to be so loud to discuss such private and personal matters in public. I didn’t have the energy to fight the patriarchy that day, so I just quickly let everyone know I’d answer their questions privately if they were interested. Now that I am older, I always look for an opportunity to bring it up. More talking about menstruation, thank you!
Your take on – ‘sex education is just about teaching youth how to have sex’?
FATIMA: It’s complete bull$h!t. Firstly, so what if we’re teaching kids the steps of sex? I’m pretty sure the more that kids know, the less likely they are to experiment. When you actually read through the process, you realise the weight of responsibility it carries. Instead of letting it be this elusive, mysterious thing, speak about it openly so that kids aren’t jumping into it to satisfy their curiosity. Aside from that, sex education is not just about “how to have sex”. It is a lesson about your sexual organs, their functions, risks, and necessary practices and routine to ensure that your reproductive system is healthy. Topics in sex ed include understanding the risks of prostate cancer, what happens to your body as it shifts into adulthood through puberty, understanding how to care for your body, keep it clean and healthy – which is vital information for anyone.