Endo Isn’t The End
By Amelia | @milljpet | August 14, 2019
I had been suffering with pain since I was thirteen but didn’t think much of the fainting episodes and vomiting, I assumed that was what periods were supposed to feel like. I would pass large clots but not tell anyone out of fear. I remember one day when I was 15, I was shopping in Target with my Mum. Whilst she was trying on clothes, I stepped out of the change room and collapsed onto the floor. My body was trying to pass a clot the size of a golf ball. I was in so much pain but just lay there thinking it was normal.
At age 19, I started experiencing extreme pain on my left side. When I visited a gp, he did not support conducting an ultrasound for something ‘minor’ and sent me on my way without intervention. The pain dissipated and later returned when I was 22. Pain so extreme in my entire abdomen that doctors thought my appendix had burst. I was placed in hospital and received an emergency operation to find that my appendix was in-tact and healthy, but my pelvis was full of free-flowing blood from a burst ovarian cyst.
When the awful pain from my operation didn’t disappear, I was referred to a public hospital with a specialty in women’s health, where I was told I might just be overly sensitive by two medical specialists.
After crying in a consultation, a empathetic doctor placed me on a diagnostic operation waiting list. After a year, I received a laparoscopy which found I did indeed have Endometriosis, the cause of my grief for 9 years.
During my operation, I had an iud inserted to stop my heavy bleeding. This did not work unfortunately and my pain and bleeding continued. It began to affect my work, studies and relationships with friends and my partner.
Fast forward to today, I am a 25 year old woman in pain everyday, on some of the highest medical intervention possible for Endometriosis. I have been asked countless amount of times by medical professionals when I expect to have children, something which is very anxiety inducing for me. Many doctors seem to believe that a hysterectomy or pregnancy will be the answer to prayers for endo sufferers, but this is not scientifically the case as Endometriosis can continue to spread.
I have since been diagnosed with a ‘sister disease’ to Endometriosis, called Adenomyosis and also have PCOS and a uterine prolapse requiring treatment. I continue to experience a public health system where I am not necessarily a priority. I now have Endometriosis attached to my bowel which now affects my digestion very badly, with rectal bleeding frequently. I struggle to maintain casual work and university studies because of pain and fatigue and often have to use a walking stick for mobility. Intimacy is extremely painful and difficult which has also lead to emotional struggles and a lowered self esteem.
Through all of this, I have learnt to respect my body. It may be dysfunctional but it is still worthy of care and love. My health is in a constant state of flux and that’s okay, I know now to expect change and honour the process. I believe I was only given these challenges because I am capable and strong enough to cope with them. I have chosen to study a Bachelor of Social Work with the hopes that I will be able to work with people struggling with chronic pain and illness. My wish is that I can help make their journey more comfortable than mine was. I want people to feel like they are valid and heard even when they can’t always speak for themselves 💗
Amelia (she/her) is a woman from Melbourne, Australia. She is 25 years old and has a diagnosis of Endometriosis, Adenomyosis, PCOS, Uterine Prolapse and Idiopathic Thrombocytopenic Purpura. She is a mobility aid user. Amelia attempts to balance causal work and university studies whilst living out of home. She enjoys travel, casually modelling as a plus size model, blogging and singing in a band. Since her diagnoses, Amelia chooses to eat intuitively and participate in light movement in the form of dance. She utilises CBD alongside other treatments and medications to cope with chronic pelvic pain and fatigue.
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