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I’m sure we all heard the recent audio clip of Triple M radio host Marty Sheargold passionately claiming on-air to the nation “God, don’t ladies carry on. Jesus Christ, there is no end of it. Honestly, endometriosis, and this is controversial… It’s made up.”
Speaking from someone who suffers with this disease, I can assure you – it is not made up and it is not a “normal” period. It is an extremely common and painful condition for women who experience menstrual cycles, however, severely lacks general awareness and understanding. So, allow me to explain what this disease actually is, and how it has affected the past 10 years of my life.
Endometriosis – a painful condition where tissue similar to that of the uterus lining grows outside the uterus, often affecting all parts of the female reproductive organ as well as the pelvic floor region. Endometriosis tissue acts on its own little cycle, growing, breaking down and bleeding as the tissue would within the uterus lining.
This causes excess bleeding, cramping, potential fertility issues and a multitude of other symptoms varying on the severity of the case. There is limited treatment available and currently no cure, making this disease essentially a lifelong chronic condition.
Endometriosis has long run in my family with most women on my mother’s side being affected. From the moment I first got my period at 10 years old I was faced with cycle abnormality and an ongoing struggle I didn’t realise would affect my lifestyle long into my young adulthood and beyond.
I had been warned by my mother that due to its genetic tendencies, I would most likely have this condition, so I was somewhat prepared for the symptoms I began to experience. What I was unaware of was the stark contrast between the diseases prevalence, the diagnosis rate and its lack of general societal awareness and consideration.
I was shocked to learn that endometriosis affects 1 in 7 Australian women by the age of 49, however diagnosis is often missed or severely delayed by up to 11 years.
In my case, it took over 6 years to be officially diagnosed despite having active symptoms from an extremely young age. In this time, I also experienced first-hand the ignorance around women’s menstrual health and how it actively affects those with difficulties.
It was isolating, being the only one I knew in grade 5 with a period. Constantly bleeding through my white school uniform dress to the point where my school receptionist would always keep a draw of spare underwear, dresses and pads for me because of how often I would bleed through in class. Always having a sick note during swim lessons as I hadn’t figured out how to use tampons yet.
By far the most humiliating experience of my youth was having to advocate for myself at the age of 10 and 11 against adults that held no empathy or understanding for my situation. My year 6 male PE teacher took it upon himself to punish me for “attempting to get out of class participation” when he refused to believe I was bleeding so often.
This included making me run laps of the 25-meter swimming pool for the entirety of the 50-minute swim lesson. All the while with crippling stomach cramps and excessive bleeding.
On another occasion I was called out for my “lies” in front of my entire class as an example to the other girls to “not pull the same excuses” as I was to get out of doing basic exercise. I was mortified.
The lack of awareness was one thing to face, but what soon became the bigger battle was the limited long-term treatment available.
Coupled with the fact I was deemed too young to officially diagnose – the best advice I was given was to experiment with different forms of hormonal medication until one seemed to work the best.
And so, at the age of 11, I was put on the contraceptive pill. This worked for a while, until my medication begun to cause severe migraine episodes. Often, I would be in class and my vision would just go black. I would stumble outside pretending nothing was wrong, before throwing up in the bushes and carrying myself to the sick bay, too embarrassed and sick to go back into class.
This kept happening until my doctor informed me that this reaction I was having could lead to a stroke and I had to drop the pill immediately. At this point, I was sick of the medications and the endless side effects they came with. I braved my period again with no medication, believing that the crippling cramps and two-week-long bleeds were easier to deal with.
So, I ignored my symptoms until one month I just did not stop bleeding. Two and a half months went by without reprieve, and my iron levels plummeted.
I finally was referred to a gynaecologist at age 16 and she explained that the only path to diagnosis and further treatment for me would be laparoscopic surgery, which is often avoided for women as young as I was.
Immediately I knew it was what I needed. After 6 years of struggle with no solution in sight, the risk of the surgery was nothing in comparison. It was my best and only option.
Only under surgery did my doctor find I had moderate-to-severe stage 4 endometriosis, with legions covering my entire pelvic floor. I was cleared of the adhesions and implanted with an IUD Mirena to help keep things uncontrol as long as possible.
The recovery was painful, but eventually things settled and for the next 3 years I did not have one period bleed.
Apparently, this happens often with IUDs, and while I was confused at first it became the most freeing thing ever. I slowly forgot the pain and torture I had grown to get used to and I was happy.
But there is no cure to endometriosis. It can only be responded to as it grows, but it can never be taken out of your DNA. So eventually my periods came back – irregularly and with renewed vengeance.
I was constantly in pain with cycles again, bloated and a lot moodier than I remember being previously. It took a while for me to address this once it started again as I convinced myself it wasn’t as bad as before. After 3 years without a period, I felt a bit like an imposter complaining about bleeding again.
I realised late last year though that I was not just going to put up with the pain anymore – even if I felt disconnected from the pain I had before. This is an obstacle I’m still trying to overcome.
I now face whether I want to experiment with alternative hormonal medications again or if a second laparoscopic surgery is the answer.
Either way, it is difficult to fully grapple with the long-term obstacles that come with this disease. The fact endometriosis is so common makes it even more shocking how few realistic treatment options there are. To think that the only options are constant changes in hormonal medications and ongoing abdominal surgery is baffling.
But this reality needs to be heard, for those 10-year-old girls who are embarrassed by what they cannot control, or the women who are still battling through what they have been led to believe is a “normal” period. It is not a normal “period”. It is not “made-up”. And there needs to be a better solution.
Written by Lauren Dorr
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