Sage-Maree's Endometriosis Story
By Sage-Maree Mandich
March is Endometriosis Awareness Month, and at QENDO we are #explainingendo by sharing your stories, practical articles for your endo toolkit, and inspiring women who will empower you to live your best life, even with endo. Sage-Maree shares her journey to diagnosis and ongoing management of her endometriosis to help others realise that painful periods are not normal.
CW: this post makes mention of pregnancy loss
I started my periods at the age of 10, they were heavy, and difficult to deal with, but hey I was a kid?
By the time high school came around, I started having more and more difficultly with them, they were heavier and the pain was so bad, that mum would let me stay home from school for the week.
She decided to take me to a gynaecologist, who said to me “you need to lose weight”. I was 13 and 39kg!
When I was 14, I started to have extreme pain in the lower right of my pelvis in between periods, we went to doctors, hospital and they all said “it’s in your head, take these anti depressants and you’ll be right”. When I was 16, the pain was so bad, we went to hospital, they admitted me and were going to take my appendix out, as they thought that was what was wrong. But they quickly turned around and said, no you’re ok, and I actually ended up being banned from that hospital.
The fight continued until one day, my mum noticed i was in so much pain I couldn’t breathe, she took me to a different hospital, they admitted me straight away, and again they said they were going to take my appendix out. They did this, my appendix was close to bursting.
A year later I was still having pains, but I was told, it’s only adhesions. When I was 19, and I had married, I had the extreme pains again, my husband thought that something wasn’t right, it was difficult for us to be intimate, and I unfortunately had 2 miscarriages (we weren’t actively trying for a baby). He would take me to hospital, they would do nothing, and we’d be sent home again. We finally got my doctor to send me to a gynaecologist (2 years of hospitals and dr visits later). He looked at me and said, “I think you have a condition called endometriosis, but for some reason scans aren’t showing anything, we are going to have to investigate” later he explained that he knew my mother, who also has endometriosis.
After he did the surgery in 2018, the results came back, and yes, I was diagnosed with endometriosis. They showed me the scans, and my uterus looked weird, it was also like the surface of the moon, full of craters! They explained to me, that my endometriosis was hiding inside those craters, which is why we can’t see them on the ultrasound, and the reason why, I cannot carry a child naturally. The pain didn’t go away, so we decided to do a 6 month course of Zoladex injections, to reset my hormonal system, and then to insert a mirena.
I have completed the Zoladex, and next week on the 10th is the day i get the Mirena.
I know it is not over yet, but fingers crossed that it’s heading it the right direction.
Blog notes: the gold standard for the diagnosis of endometriosis is laparoscopy. Currently those in the field suggest some features congruent with endometriosis (for example an endometrioma, deep infiltrating endometriosis, or organs adhered to other organs or the peritoneum due to adhesions) MAY be present on a scan - eg ultrasound or MRI, however the absence of these does not rule out a diagnosis of endometriosis. Any findings on a scan should be identified by an experienced women’s health radiographer in conjunction with an endometriosis specialist. It is generally accepted based on current evidence that most endometriosis does not appear on scans. This evidence is constantly being updated as we learn more about endometriosis.
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