I’m now one week post undergoing a total hysterectomy surgery. I’m 38 years old. Here’s my story thus far…
As I write now, the morning after the course of opioid based pain medication I was prescribed finished, I sit in a puddle of emotions. Over the last week I’ve been in a bit of a stoned cloud of dulled senses. As I emerge from that I note the surfacing of emotions and physical sensations that have been gurgling quietly under the haze. I write these words as a process of catharsis for myself, and also to share my story.
I have found the testimonials and online forums of other women, transmen and many numerous individuals, who have been through the hysterectomy process incredibly valuable. The HysterSisters online support community in particular has been a huge source of information and comfort. Although it’s helpful to know what others have been through, each person’s experience of the hysterectomy journey is unique, and you need to live it for yourself.
Hysterectomy Support Forum | Hysterectomy Support Group
Hysterectomy support from HysterSisters - diagnosis to surgery through recovery and beyond. Covering: pre-op, post-op…
This journey is not a fun one. But as with most journeys, there are opportunities to learn and grow. I hope to reflect on and share some of these here.
So, let’s start this particular story
on the morning of Wednesday the 23rd of September. I had an appointment booked that morning with a gynae, for a routine pap smear that I was well due for, and to check up on some weird, persistent and increasingly noticeable cramps I’d been having. I was a bit nervous about the appointment, I suppose due to an anxiety about what I might discover. Anyway, about an hour before I was due to leave for the appointment, I received a call from my Dad, who informed me that my aunt, his sister, had chosen to end her own life the previous night. I choose those words very consciously. It was her choice, and her decision, to bring her own life to an end. Hearing this news, as you can imagine, is devastatingly sad, and above all a huge shock. In the immediacy of absorbing this news, and performing the practicalities of having to phone other family members to notify them, one somehow functions.
Two hours later, and I’m sitting in the gynae’s consulting room on auto-pilot. A brief sexual and reproductive health history is taken: I’m 38, I do not have children, and currently don’t plan to. My partner is booked in for a vasectomy soon. I’m in good health etc etc. Now for the physical examination and pap smear, so I undress and lie down. From one touch of my abdomen, the Doctor can feel something. I’m worried now. Ultrasound imaging confirms her initial thought — there is a very large fibroid in my uterus. My uterus, as a result, is the size of a 16 week pregnancy. Shite.
Clothes back on and I’m sitting at her desk. She explains more about uterine fibroids — very common (40–60% of women have them), generally non-cancerous, genetic etc. Many women don’t even notice them, until they become large or numerous, and cause heavy bleeding, cramps, miscarriages etc. In my case, given the size and my lack of reproductive aspirations, she suggests I have a total abdominal hysterectomy. Basically slice me open and whip it out. Fuck. So there I sit, at her desk, absorbing this second piece of huge and shocking news.
Just stop a moment and consider the word “hysterectomy”. It’s a big, fat, heavy word. Loaded with its fair share of stigma and shame, let alone terrible historical associations of removing women’s wombs to cure “hysteria”. Being told you need a hysterectomy carries a slightly different emotional weight to being told you need other surgeries, even those on the same level of invasiveness. It also carries a different social weight. Needless to say, it’s a shocking thing to hear.
Fast forward a bit. The next few days are highly saturated with strong and weighty emotions. I had pretty much resigned myself to her diagnosis and prescribed surgery. My mother, and other people around me, strongly urged me to go for a second opinion, at least a confirmatory opinion. Anyway I won’t go into the details of the following weeks — but in the end I sought four opinions. I read everything I could get my hands on, spoke to Doctor friends and many other people who had experienced uterine complications. I learned about all the options available to me — in brief: 1) embolisation, where they cut the blood supply to your fibroid off and leave it to wither and die inside you; 2) myomectomy, the removal of just the fibroid itself — in my case tricky given the size and high risk of subsequent blood loss; 3) hormonal treatments which could help shrink the fibroid, or at least slow its growth, and thus buy me some time; 4) abdominal hysterectomy — slicing my abdomen open and removing the uterus — old school, straight forward and fairly uncomplicated, however a long recovery time and potential to lose some abdominal muscle integrity; and lastly 5) laparoscopically assisted vaginal hysterectomy — key hole surgery to detach the uterus, which is then removed through the vagina.
By the end of expert consultation number four, I had come to the conclusion that the last option, laparoscopically assisted vaginal hysterectomy (LAVH), was the best one for me. Surgeon selected, date booked, and life continues.
Reflecting on my womb
Through this time, obviously with the global COVID-19 pandemic as the backdrop to it all, the journey’s focus was on deep reflection and emotional processing. Despite having essentially made the decision not to have biological children, when this decision is taken away from you, your agency in the choice removed, you feel the rug being pulled from under your feet.
For many many years of my life, in fact numerically the majority of my life, I have wanted children. From a very young age I breastfed my dolls, loved babies, and had a deep longing to one day be pregnant, to breastfeed, to carry my own child in my arms. Somewhere in my early thirties, this longing somehow evaporated. I won’t dwell too deeply on my feelings on this, but suffice to say, there was a point in my life where I wanted my womb to carry out its reproductive function.
Thanks to pervasive, and fairly universal social norms, women of a certain age are expected to take up the role of motherhood. Throughout my late twenties and thirties, mostly in long term stable relationships, the questioning — “when are you going to have children?”… My persistent childless state putting me in a position of increasingly having to justify myself. This topic, of women’s decisions to not have children, has been much debated and much written about, so I won’t delve too deeply here. The one point though that stands out for me being that people who decide to have children are not made to justify that decision, they are applauded and encouraged. People who decide not to have children are constantly made to justify it, made to question and doubt themselves, consider future remorse and regret… I would say both decisions should be questioned thoroughly, arguably the decision to bear children having many more consequences, personal, societal and environmental, than the decision not to. Anyway let’s leave that there…
The Last Blood ceremony
One key step on my journey of preparation was a ceremony I decided to hold. I called it The Last Blood. Menstruation and the monthly hormonal cycle that my body has undergone since the tender age of 12 have been very important in my life. I have enthusiastically taken up the role as a campaigner for women’s menstrual health — most notably for my advocacy of menstrual cups, and spokesperson for challenging menstrual shame. (I have even ventured here academically):
"The state of mind tells me it's dirty": menstrual shame amongst women using a vaginal ring in Sub…
ABSTRACT Socio-cultural beliefs and practices surrounding menses influence women's sexual and reproductive health…
Having studied Social Anthropology, I have taken a deep interest in the ritualistic and ceremonial aspects of societies and cultures. I’m not exactly a lover of all ceremony — often too formulaic and contrived for my liking. However their role in marking life events and transitions, as opportunities to honour, respect and reflect upon change, made me feel that I would benefit from holding a ceremony. My first period, the “first blood”, was celebrated by my mother, with joyful tears and a grown up haircut marking my transition into “womanhood”. And thus I felt it poignant to honour my “last blood”.
And so, to mark this transition in my life, honour the change, and reflect upon the process, I had a very beautiful and emotional little ceremony with a small group of special people. The space was one for sharing, reflecting, crying, supporting, and loving. Simply, and without pomp or pretension. One thing that really stood out for me was the narrative shared by a few of the women present, in their 30s and 40s, who for one reason or another, do not have children. The narratives centred on the symbolism of the womb, the expected centrality of reproductive capacity in women’s lives, the social norms and pressures, the personal journeys of emotion and physicality, shared but unique. The key theme of the evening was honouring, and letting go. We wrapped up the ceremonial portion of the evening with this song mantra, which I’ve been listening to:
All of this was part of the process of processing and preparing myself..
So the weeks went by, I did as much as I can — running, surfing, climbing, working, gardening, all at full tilt. Those who know me, know that full tilt for me, is considered extreme by others. To give you an idea, here is a picture of me ‘gardening’.
I made the most of my physical strength and fitness in these few weeks, which ironically seemed near optimal. I also consulted a wonderful pelvic floor physiotherapist, learning a great deal about my pelvic floor muscles, and coming away with some breathing exercises to see me through. On my last weekend, I even opened a boulder problem and named it to honour the journey.
Fast forward again, I’m now in my hospital gown and sexy compression stockings, waiting to be taken into theatre. Over the past few days, the extreme anxiety and fear I had been feeling seems to have calmed. Impending, inevitable. The older woman in the bed across from mine in the ward offers some final reassurance that everything will be ok.
The time has come
I’m wheeled through corridors, viewing the hospital from my prone position, a perspective I’ve been fortunate enough only to ever see on screen. IV tubes attached. legs in stirrups, oxygen mask placed over my face, and I’m under…
Three hours later I wake up, shivering uncontrollably, in pain and deep discomfort. I’m taken back to the ward, dosed up to the eyeballs, and I just feel myself wracked with sobs. Flooded with strong emotion, probably some relief at it being over, shock and overwhelming sadness. I feel a hand on mine. The lady from the bed across has taken my hand in hers, gently stroking and soothing. Taking the role of the mother that cannot be there, thanks to COVID and immigration laws. My crying abates and I drift off.
What more remains to be told of this story today? Two nights in hospital, receiving wonderful high quality care, I am discharged once I can stand up unaided, walk to the loo, and urinate successfully without a catheter. It took a few false starts and blackouts for me to get here, but I’m ready to go home now. As I leave the ward I thank my guardian mother stand-in for her kindness. She replied that it was a special moment for her, having never had a daughter herself, and was grateful to have been there to do so in my mother’s absence.
And so this past week has been spent
reclining in bed, on the sofa, gently, very gently, walking. Reading, uncharacteristically dozing and napping, working from bed. Emotions have been up and down. Physically — swelling, bruising, pain, immobility, discomfort. Going to the loo is difficult, my entire abdomen and genital region is swollen and painful, I can’t stand up straight, my back aches. But I’m ok.
As I emerge from the opioid cloud, into sharp sensation,
I also feel a whole gambit of emotions. Also knowing that for the moment, while I feel incapacitated, the forced slowness is manageable. However in a week or two, as my body heals and strengthens, I know there will be challenges in controlling the frustration over not being able to resume my usual active life. The activities that bring me happiness and feed my wellbeing. My partner and I will have to ride these waves as best we can, trusting that things will get back to our chosen normal soon.
And to end with the old mantra: “I am blessed, I am grateful”
Throughout this journey, I have received the most wonderful support, from my the incredible people that surround me, near and far. I feel immensely loved.