Fashion Quarterly’s editor-at-large, Nicole Saunders, shares her endometriosis story
13 September 2022
By Fashion Quarterly
As part of Fashion Quarterly's One in 10 project, our editor-at-large Nicole Saunders shares her own experience with endometriosis and getting a diagnosis.
I detest the word ‘normal’ — what is normal? It’s not something that’s possible to define; there is no normal, and the word needs to be erased from our vocabulary, particularly when we are talking about bodies, pain, and menstruation. It’s a word I tired of hearing over the years, yet it’s one I heard frequently as I searched for answers.
From a young age, I didn’t understand what was going on with my body, and, like many young people, I was told the pain was normal — take some Nurofen and get on with it, or if it’s really bad take the day off school and you’ll be right. So, like the majority of those living with endometriosis do, I soldiered on through my teens and into my 20s, and, as many with pelvic pain are, was advised to take the contraceptive pill by my doctor.
For years it was OK, and it did help. I skipped the sugar pills and didn’t have a period and thought that’s the end of my story. But after a while, the pain came back. And it wasn’t just pain with my period; there was pain in my ovaries, pain with bowel movements, pain with urination. And it wasn’t just when I had my period; it was most days of the month. By the time I was in my mid 30s, my pain had come to define much of my life, and although deep down I knew that something was wrong, it wasn’t until I was 34 that I heard the word ‘endometriosis’ while visiting a doctor.
There was such a big period of anguish for me. It’s something that’s hard to talk about, and it’s something that a lot of women and people with endometriosis go through — not having a diagnosis, and not knowing what’s wrong with your body and why it’s doing this to you. You get told it’s all in your head. You get told, ‘deal with the mental-health side of things’, and that takes a huge toll. You start to believe that it is all in your head or you start thinking, No one can tell me what’s wrong: it must be the worst possible thing imaginable. Your mind goes to these really dark places.
At the same time that I was trying to manage my pain and get answers, my partner and I decided we wanted to start a family. We decided to take a two-birds-with-one-stone approach and see a fertility specialist, but it was incredibly deflating. I learned that my egg reserve was so low, menopause was imminent, and IVF wasn’t likely to be successful. Starting IVF didn’t seem like a plausible solution to my chronic pain, so I sought a second and then a third opinion.
My diagnosis at 36 years of age came as a huge relief. All the pieces of the puzzle fell into place. You go through this period of self-doubt and get told, ‘listen to your body, trust your body’. The truth was, I couldn’t trust my body, because at the same time I had been told this pain was normal, and to ‘work on your anxiety or depression’. But it’s such a vicious cycle; the chronic pain feeds the anxiety and depression, and vice versa.
While I wouldn’t change my journey — my boisterous son is about to turn one in days — I do wish my younger self had the courage to talk about what she was going through. Talk with your family, talk with your friends, talk with your doctors. Our experiences are all so unique, but I believe that the more we share and the more we get the word out about endometriosis, the more progress we will make with it. We can empower one another to get answers and to manage pain.
