Frances (Alison Oliver) in Conversations with Friends (2022). Image: Imdb.com.
‘What if I don’t feel like a woman anymore?’
It was the day before my hysterectomy and I was crying to my husband. I wanted this. And while I was as excited as one can be about major surgery, a line from Erin Brockovich played on a loop in my mind.
With tears streaming down my face, I was picturing Marg Helgenberger’s character, cancer sufferer Donna Jensen, asking the question: ‘You think if you’ve got no uterus and no breasts you’re still technically a woman?’
It’s the first time I remember hearing about a hysterectomy.
From the moment I became fully aware I had a uterus, it’s been complicated. Every time my period arrived, I was in for a world of pain. It worsened with time, and I insisted on seeing a gynaecologist when it became debilitating.
One of the most dangerous lies we’ve been fed is that periods are naturally painful. Because periods aren’t meant to be painful. Uncomfortable, yes. But painful? No. If your period sees you unable to leave your bed, attend work or school or participate in everyday life, please see your doctor. Immediately.
From the moment I became fully aware I had a uterus, it’s been complicated.
Because painful periods are accepted as normal, the average time it takes for a diagnosis of endometriosis is seven years. I was lucky. At sixteen, a gynaecologist told me the pain couldn’t possibly be that bad. It was all in my head. Part of me believed her. Perhaps I was being dramatic. So I did nothing. I did nothing until my older sister was diagnosed with endometriosis, an often painful condition in which tissue similar to the lining of the uterus grows outside the uterus. As it’s often genetic, I went back to my GP for a new referral. Six weeks after my first appointment, I was in surgery where I received my formal endo diagnosis. I was seventeen and in my final year of school.
I’m the type of person who searches for experiences like mine in pop culture. We could wax lyrical for days about why, but it boils down to feeling seen. There’s comfort in seeing a fictional character suffer through something you’re intimately acquainted with.
At the time of my diagnosis—and still now—I wondered why aren’t there more honest portrayals of menstruation issues in popular culture?
When I picked up Sally Rooney’s novel Conversations With Friends, it was almost startling to see depictions of period pain so debilitating medical care was required. Frances’ pain is life-changing:
I noticed that along with the blood were thick gray clots of what looked like skin tissue. I had never seen anything like this before and it scared me so badly that the only comforting idea I could think of was: maybe it’s not happening…I realized that it wasn’t just a feeling, something I could dismiss to myself. It was an outside reality that I couldn’t change.
It wasn’t merely ‘I need a heat pack and to eat my weight in chocolate’, it was ‘I feel like I’m dying’, which would only sound dramatic to anyone who hadn’t experienced it. For me, after years of worsening symptoms and a low quality of life, I knew it was time to make another appointment. I sat in my gynaecologist’s office, shifting on the plastic seat while he had images of the ultrasound completed in the adjoining room mere moments ago up on his computer screen. I was gearing for a rinse and repeat.
There’s comfort in seeing a fictional character suffer through something you’re intimately acquainted with.
Instead, on top of the endometriosis there was a new diagnosis: adenomyosis. Adenomyosis is a condition in which endometrial tissue exists within and grows into the uterine wall. This explains a lot. Why my period has been increasingly heavier, leaking through menstrual cups and maternity pads. Why I’m consistently anaemic. Why my hair is falling out. Why I suffer terrible headaches. Why I have shooting pain down my legs. A big, tilted uterus will do all that.
The doctor hypothesised there’d be endometriosis within the lining of my uterus. Post-surgical pathology confirmed this. We initially planned another laparoscopy and a Mirena IUD to curb the excessive bleeding.
‘What happens if this doesn’t work?’ I asked.
‘We could do an ablation, then we could discuss hormone replacement therapy, and further down the line hysterectomy.’ (Though it’s very important to note here that a hysterectomy is not a cure for endometriosis.)
I was nodding. It was a lot but I was comfortable knowing there was a plan.
‘While you’re in there, do you think you could remove my fallopian tubes? I’m done having children.’
‘If you’re sure you’re done having children, we can put hysterectomy on the table.’
After years of worsening symptoms and a low quality of life, I knew it was time to make another appointment.
For years I talked about how I couldn’t wait to throw my uterus out. Now was my chance. So I went in search of other people’s stories. It was fruitless. For all the increased talk and visibility of fertility treatments, there is very little time spent talking about the things which can cause infertility in popular media. Like endometriosis and polycystic ovarian syndrome and a host of other things.
Menstruation and hysterectomy? Forget it. Overshare.
Outside of Erin Brockovich, the only example I could find easily was Grey’s Anatomy. Even then, for a show that’s had more than 400 episodes, outside of emergency life-saving hysterectomies, there’s only been one planned hysterectomy.
It’s season two. Derek and Addison are ‘working on their marriage’ when their best friends (who never appear again) show up in Seattle. Savannah has tested positive for BRACA1 and wants a complete hysterectomy and double mastectomy. Weiss thinks she’s overreacting. They want Addison’s opinion as an OB/GYN. There’s lots of arguing, walkouts and opinions. But it’s the response from Katherine Heigl’s Izzie which stands out most:
If there was a genetic test for testicular cancer, you think men who tested positive would have the surgery? No. You know why? It’s castration. What man would willingly get rid of the part of his anatomy that makes him a man? This woman is having herself castrated. And we book an O.R. and act like it means nothing. It’s not nothing.
Except it’s not true.
The fact I had a hysterectomy at thirty-two without a fight is rare. A search on my local mum’s Facebook group, where life showed more examples than art, returns posts from women desperately wanting a hysterectomy who are denied. Too young. Not ‘enough’ children. They might regret it. What worked in my favour was seeing the same specialist for 15 years.
And while my hysterectomy didn’t remove my ovaries (only my uterus, fallopian tubes and cervix), why would it be this ‘part’ of my anatomy that ‘makes’ me a woman?
It’s another storyline filled with grief.
The fact I had a hysterectomy at thirty-two without a fight is rare.
The most high-profile discussion of hysterectomy for quality-of-life improvement was when Lena Dunham had one in her early 30s. Even then, in the Vogue article where she shared her experience, the tone was negative: ‘Persistent endometriosis and intolerable pain led Lena Dunham to make a devastating decision: to have a hysterectomy at 31.’
But our stories aren’t the same, Lena and me. The similarities? Both our hysterectomies happened to improve our quality of life. The difference? Hers had grief attached to it:
It’s been a few months now. Despite some small complications (please remember to drink lots of water; that’s my only advice) I am healing like a champ…My mind, my spirit, are another story. Because I had to work so hard to have my pain acknowledged, there was no time to feel fear or grief. To say goodbye. I made a choice that never was a choice for me, yet mourning feels like a luxury I don’t have.
My hysterectomy wasn’t devastating for me. I wasn’t sad, I wasn’t mourning. I was relieved. I felt liberated. Something I rarely see openly discussed.
Finally.
I had been in pain for a solid twenty years of my life and I’m only in my early thirties.
My experience wasn’t steeped in grief like Lena.
It was easy for me to say goodbye to a uterus I resented having. It already gave me two beautiful children and I was ready to terminate its employment for services rendered. In no set of circumstances will I want more children. No, not even if my husband dies or we get divorced. And yes, people asked me to make sure.
I was relieved. I felt liberated. Something I rarely see openly discussed.
Outside of my pre-surgery tears, I haven’t once cried over what I ‘lost’. Because I gained so much more. I didn’t fully comprehend just how much pain I had been living with until I didn’t have to anymore. I still feel like the same person, only minus the chronic pain I experienced three to four weeks out of the month, and with a slightly jiggly tummy where an extra-large uterus used to live.
We can’t always expect to see accurate representations of everything we experience. But I still wish I had found a representation of how I felt about my hysterectomy: relief. In Conversations with Friends, Frances is resigned as she grapples with her endo diagnosis:
I realised my life would be full of mundane physical suffering, and that there was nothing special about it. Suffering wouldn’t make me special, and pretending not to suffer wouldn’t make me special. Talking about it, or even writing about it, would not transform the suffering into something useful.
I disagree. (And I’m sure Sally Rooney does too, having put such an honest depiction to the page.) There’s a tremendous amount to be gained from sharing the physical realities experienced by a large chunk of the human population. At the very least, it helps us to feel less alone.
