Making the Invisible, Visible with Emily Abdolali
By Emily Abdolali
In this blog we hear from Emily Abdolali, who experienced a myriad of painful and debilitating symptoms from the age of 12, before initially being diagnosed with PCOS. Years later, still unable to pin down a cause for her pain or heavy bleeding, and enduring many painful ruptures of ovarian cysts, Emily finally sought another opinion. This is her story of being diagnosed with PCOS, endometriosis and adenomyosis. She shares her story in the hope that it will support and empower others to share theirs, and take control of their health.
Hey! My name’s Emily, I’m 25 years old and I live in Melbourne with my girlfriend Rita. As I write this piece, I’m sitting in a hospital bed in a private hospital in Melbourne, true Endo style right?!
I was first diagnosed with PCOS back when I was 15 years old. I first got my period at age 12 and from day dot it was absolute hell. I would get horrendous cramps that would leave me in bed all day and missing school. I was clotting and bleeding so heavy that one packet of heavy flow pads would only last 2 days. My periods were also never regular, sometimes I’d bleed for 3 weeks straight and then other times I wouldn’t bleed anywhere from 2 to 5 months.
Because there was never much discussion about periods in my home or at school, I didn’t really say anything because I thought this was all completely normal and just part of being an adult, plus I was super embarrassed even just talking about periods. Ridiculous, I know.
Mum ended up coming to me because we were always running out of pads so she took me to our GP who sent me off for an internal ultrasound. I still remember Mums jaw drop when she saw all the follicles on the screen, the cysts had completely covered my ovaries. So with a referral in hand, off to the gynaecologist we went were I was diagnosed with PCOS and automatically put on the pill. Yasmin to be precise. I clearly remember there being next to no discussion of other ways to manage PCOS, that there is no cure and what symptoms came along with it but I was already starting to notice. All throughout high school I had terrible hormonal acne and I also was growing extra facial hair.
My confidence was at an all time low, I was in constant pain, I didn’t know how to get rid of the hair, I never went anywhere or saw anyone without makeup on and I was battling anxiety and depression just because of how insecure I was. My periods were controlling my life at this point.
I was set to move to a private all girls Catholic collage for the last 2 years of high school but during my orientation, I had leaked right through my dress and didn’t notice until I had groups of girls staring, whispering and laughing at me in the halls. Safe to say, I never moved schools.
Fast forward and as I got older the pain just kept getting worse. It was disrupting my ever day routines, I was taking so much time off work because the pain would have me in tears, curled up in a ball with a hot water bottle completely unable to get out of bed.
At age 21 my first ovarian cyst ruptured and I will never forget that feeling. The pain was absolutely horrific. I was vomiting, sweating, shaking and could barely stand, I actually had to call for an ambulance because I had no idea what was happening to me. Unfortunately this would keep continuing and up until today, 4 years later, I’ve had 11 ovarian cysts rupture that I have noticed due to those exact excruciating pains and symptoms I had the first time round.
Another strange symptom I started to notice was whenever my partner and I would use toys in the bedroom and had penetrative sex, my vulva and vagina would ache and burn. I would end up sitting on the toilet in tears many, many times and it got to a point where Rita, my partner, said it’s time to go to the GP and start getting some answers. My doctor really wanted me to see a gynaecologist who would perform a Laparoscopy because she had a sneaky suspicion I might have something called Endometriosis. I didn’t really know much about Endo, it was definitely not spoken about in school but I knew a couple of friends had it but that was it. So the waiting game began to see the Gynaecologist but before I even had the chance, another cyst had burst and this one was insanely painful, I had to call for an ambulance. Due to Covid-19, the paramedics confirmed with me if I had private health insurance then took me directly to the closest private hospital. It must have been my lucky night because the Gynaecologist came in straight away and after I give him a rundown of my health history and up and coming Laparoscopy, he said he was happy to do it the next day which I was obviously anxious for but so relieved that I may have some sort of answers for the last 13 odd years.
On July 10th 2020 I was diagnosed with Stage 4 Endometriosis. It was a pretty emotional moment for me because I finally could put a name to what was contributing to so much physical and emotional pain in my life. And as corny as it sounds, it was like finding the last piece of the puzzle.
Unfortunately my body didn’t stop there.
8 weeks post surgery, I was experiencing excruciating lower abdominal pain, I honestly thought I could not catch a break.
After tests, scans and ultrasounds were done, I was diagnosed with Adenomyosis, yet another chronic illness I’d heard nothing about. Turns out it’s like Endometriosis’s sister, as a friend of mine said, “It’s like having two diseases working together to attack your body” which couldn’t feel anymore real.
I now know these surgeries are going to become a fairly regular process for me.
Endo effects 1 in 10 people and it takes roughly 7-10 years for someone to actually be diagnosed which to me sounds absurd. This is something that has to change, it needs to change in the schooling system, in our conversation at home and with our friends, we need to teach our kids that painful and debilitating periods are not normal.
I decided to make an Instagram account (@endo__em) specifically for my personal journey and the online Endo family have been the most supportive and uplifting people I’ve ever come across and they’ve made this process for me that little bit easier as I learn each and everyday.
Yep, having an Invisible Illness’s suck but the more we talk about it, the more people will understand it and get the appropriate medical treatment!
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