Alessandra's Endo Journey
By Alessandra Hall
Endometriosis is a battle. A battle that started in my family with my mother.
After being told her menstrual pain was psychological at the age of 24 by one of Brisbane’s leading gynaecologists, it took my mother a further 4 years before someone diagnosed her with endometriosis. A total of 14 years delay in diagnosis.
For my mother, endometriosis meant waking up in the middle of the night feeling like a knife was inside her and falling incredibly ill as her body was constantly too exhausted to fight off infections. Ultimately, her endometriosis lead to an ectopic pregnancy at the age of 36 due to the severe scarring and endometrial fibers within her fallopian tubes. This took my parents on a journey of IVF treatments which eventually allowed them to fall pregnant with myself and my younger brother.
When I was 14 I had my first period. Very quickly, what was already a daunting experience turned even worse with severe pains all over my body, bloating and headaches. In some ways I would say it was fortunate for me that my mother had experienced endometriosis because when I started to tell her about my period she immediately wanted me to see a gyno. I went to my GP to get a referral and when telling her my symptoms I was told by this doctor that it was just a ‘bad period’ but that I should go on the pill and skip all my period so I didn’t have to worry about it. After the appointment, I felt really embarrassed that I had wasted a doctor’s time telling them about my period only to find out it was no big deal.
For the next 7 years I took this advice and skipped as many periods as possible. Something I had always noticed though was that although I wasn’t bleeding, all my other symptoms had progressively gotten worse and there was more tell tale signs of endometriosis. Severe pain, headaches, flu like symptoms, irritable bowl, painful sex, bleeding during sex and bloating beyond belief.
Eventually, I had to be moved onto a stronger pill as my periods would come regardless of me trying to skip them. This new pill worked for a year until I reached the same issue again. My mother was becoming increasingly concerned urging that I go back to the GP (yet again) and request a referral for a gyno. So, that is what I did. A part of me was still fearing I was wasting more time of a doctor but I had an overriding feeling that something was wrong.
Finally, I got a referral. In my fist appointment with my gynaecologist she said she was almost certain I had endometriosis especially given the family history. What was even more assuring was that I was told if it wasn’t endometriosis it was something else because what I was experiencing was not normal. Oddly enough, hearing this was music to my ears. Finally I was receiving recognition. So, I underwent exploratory surgery to diagnose my issues and surely enough endometrial fibers were found all over my ovaries, around my fallopian tubes as well as a few other areas.
I can say I was honestly relieved to have been diagnosed because this meant I had an explanation for what I was experiencing. I can’t say that my surgery removing the fibers from these areas helped reduce my pain or bloating, in fact my periods have only become more irregular as the years have passed. As I write this, I have now had my period for 9 and a half weeks. But, my diagnosis did give me a sense of relief that I wasn’t crazy. It also spurred on my desire to research the heck out of a terrible disease that too few people know about.
A friend of mine was also diagnosed with endometriosis shortly after me and having another’s support has been phenomenal. Someone who understands what you are going through without saying “everyone gets cramps” and “its only a few days each month, you’ll be right”. This friend invited me to Endo Awareness Brisbane’s inaugural lunch and I can honestly say it was life changing. The energy of this event made me realise I could do more for the other women experiencing endometriosis. Since then, I was honoured to be asked by the founders of Endo Awareness Brisbane to join the committee. Working alongside this group of phenomenal women creating ‘Lunching to End Endo’ in 2018 has been incredible. When we sold out of tickets it really hit home that what we were doing was so important for so many people. Feeling the support of so many women and men was pretty amazing. It helps us to remember that you are not alone, and with your help we can change things not only for ourselves, but for the next generation of women with endometriosis.
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