Words by Evelyn, 27 VIC
I was so excited by the prospect of my impending hysterectomy that a week out from the surgery I threw a “Farewell-Uterus” Party. I spent a day making a giant papier-mâché uterus piñata, covered it in pink and white frilled tissue paper, and filled it with red lollies: jaffas, raspberries, frogs, even a few jelly babies. I invited friends to bring a plate of something uterus-themed. Their creations were as outlandish as the piñata, and as varied as its contents. They signed my hysterectomy advice book as if it were a bon-voyage card.
I threw a party because I was thrilled that my years of agitation had finally reached an end. I looked forward to what I hoped would be a pain-free future, one in which I was no longer confronted by medical specialists unable to see past my relative youth as a barrier to a final treatment for the mystery disease crippling me one week in every four.
By my mid-twenties my periods were irregular and could start suddenly, sometimes within a week of the last one ending. At times the pain was so powerful it would make me sick. As each month passed, incrementally the pain worsened. I worked in a job requiring interstate travel, and I always carried an emergency change of clothes. On one awful occasion, I boarded a flight feeling fine but mid-air I felt the familiar drop in my lower abdomen and by the time we landed, blood had flooded through four layers of clothing – undies, stockings, slip, and skirt – onto the seating. I nearly fainted as I crossed the air bridge. I learned to buy dark, patterned bed sheets as I often woke in the night lying in pools of blood that resembled a crime scene. I learned to map my movements according to the proximity to a public toilet, as the excessive bleeding brought with it other, more unpleasant urgent symptoms. My relationship with my employer grew strained as I used up all my sick leave seeking a diagnosis, treatment, and being… well, sick.
Despite blood tests that showed I was clearly anaemic, for nearly five years medical specialists told me I must be exaggerating the pain and that my symptoms were gastro-intestinal related. They recommended taking iron supplements and losing weight. My queries about a hysterectomy were met with scoffs and claims that I was “too young to know I wanted”. I was 26. I told them I was sure I didn’t want children, but they insisted I might change my mind. I had significant difficulty finding a specialist whom understood the complexities of my symptoms and related reproductive diseases which exacerbated my inability to truly trust the judgements of medical professionals.
It took repeated visits to emergency and consultations with several male specialists before I was finally referred to a female surgeon with a specialty in endometriosis. Within weeks she delivered startling news: the root of my problems was a disease called adenomyosis. I was confused, “Do you mean endometriosis?” I knew what that was; lots of my friends had struggled with it, and another doctor had ruled it out for me two years earlier. “No. Adenomyosis. Like endo, but different.” I had never heard of it. Nor had any of my friends, or anyone I’ve met since.
Adenomyosis is a painful disease of the uterus, which is often mistaken, misdiagnosed or co-existing with endometriosis as it shares many similar symptoms. Adenomyosis is a debilitating disease sometimes described as the “evil twin sister” or “poor cousin” of endometriosis. I find that the best way to describe it is that it’s like endo but backwards. That is, endometriosis occurs where the lining of the uterus grows outside the uterus, while adenomyosis sees the lining growing backwards into the muscle of the uterine wall. It is a simplistic explanation for a complicated and poorly understood disease and according to Endometriosis Australia, may affect up to 35% of women.
The distinguishing symptoms are lengthened menstrual periods, heavy bleeding, and significant pain. The pain levels are not equivalent to “normal” period pain, which should be no more than mild discomfort. Keep in mind that it is the contraction of the uterus shedding its lining which causes menstrual cramping, and so the pain comes from the uterus trying to expel lining from within the muscle wall. Secondary symptoms can include anaemia, nausea, vomiting, fatigue and collapse, diarrhoea and/or constipation, and anxiety and depression.
Until recently, the only method to accurately diagnose adenomyosis was also its “gold standard” treatment: a hysterectomy. That was fine for me; I never wanted kids. It is not, however, an ideal option for most. New imaging diagnostics are becoming increasingly available and non-surgical treatments are improving. Last year the Federal Government allocated a mere $2.5 million to endometriosis research, however consideration for adenomyosis was not included. The only advocacy article I’ve been able to find online was a single blog entry dedicated to adenomyosis from Endometriosis Australia in 2016.
The uterus-pinata proved difficult to break open, and it took many hard hits to finally spill its treasure of red lollies across my kitchen floor. I never had another period, and immediately following my recovery, I bought new bedsheets. Crisp, clean white ones. I have since discovered what life can be like when not in constant pain, or constant fear of imminent pain. I have energy. I lost weight. I am happier. I haven’t changed my mind about kids.