On one of many interminable groundhog days during the January lockdown, I am having what I’ve come to call a ‘walkie-talkie’ with a friend. She asks me how I’ve been.
Shall I answer ‘fine’ or tell the truth and commence the lamentation of my recent ill-health? Shall I tell of the surgery that dares not speak its name: whisper it — a hysterectomy?
Although we haven’t known each other long, we connected as soon as we met. And so I decide to reveal my midnight ambulance dash to hospital, ensuing misdiagnosis, follow-up scans, urgent recall to hospital and impending surgery to remove my womb.
As I’m recounting, I sense something in her apart from her obvious sympathy.
‘What date are you having it?’ she asks. I tell her. ‘I’m having mine the day after.’
On one of many interminable groundhog days during the January lockdown , I am having what I’ve come to call a ‘walkie-talkie’ with a friend. She asks me how I’ve been (pictured, Olivia Lichenstein)
We’d hug each other if we inhabited the same bubble. Instead we laugh with relief at being able to share our shameful secret.
For even in this age when seemingly every personal detail is shared far and wide, a hysterectomy remains a deep embarrassment.
While privately my friend and I proclaim ourselves ‘hysterectomy buddies,’ to the outside world, we’ll admit only to being ‘surgery buddies’. It’s a source of great comfort to us that we are able to travel this path together, for this is the midlife shame no woman cares to discuss.
While menopause and miscarriage have, in recent years, inched out of the closet, hysterectomy remains firmly within it.
Around 55,000 hysterectomy operations are carried out in the UK each year. This means about one in five women will have a hysterectomy at some point and while the most common age to have one is between 40-50, they are often carried out on women outside of this age group. My friend and I are both over 55. Once you’ve had one, you realise you’ve become a member of this rather larger than imagined hysterectomy club.
Even in this age when seemingly every personal detail is shared far and wide, a hysterectomy remains a deep embarrassment
Those not in the club might wonder why a hysterectomy has such a perceived stigma. Why is it not treated as any abdominal surgery — one of those things, something painful to endure, and then rapidly move on from?
Like my brother’s surgery: three weeks before my operation, he was suddenly admitted to hospital. His intestines had twisted and he had to have 70cm removed in a life-saving, emergency operation. It was terrifying, but he was soon recovering and cheerfully talking openly and to all about his ‘gizzards’, joking that due to his new and somewhat brutal scar, his bikini-wearing days might be over.
In the face of his light-hearted approach, I initially was determined to treat my own impending ‘procedure’ as little more than a plumbing job.
After all, these parts of mine had done their job, they’d grown and produced two children. I should, I decided, thank my uterus for its splendid service, salute it, bid it farewell and move on.
But despite my best attempts to adopt a brave face, the fact remains that ageing with its accompanying loss of sexual power is hard enough to navigate as it is. The onset of menopause shrouds women in a cloak of invisibility; add to that a hysterectomy and the folds of this cloak thicken and feel ever more inescapable.
After my operation, I couldn’t help but be flooded with doubts about my femininity. Was I less of a woman now that I no longer had a womb? The first three letters of woman are the same as in womb for heaven’s sake, so what kind of a womb-an could I be without one?
Even post-menopause, the removal of our reproductive organs sounds the irreversible death knell to any hope or possibility of reproducing, making us feel that we are missing the most vital part of ourselves as women.
My journey to a hysterectomy began several years ago when, after numerous scans, I was diagnosed with a pedunculated fibroid on the outside of my uterus (a fibroid attached to the external uterine wall by a stalk). I was told that it was harmless and best left alone.
A few years later, I discovered I had diverticulitis (when the pockets of your colon wall become infected). I assumed therefore, that, despite my best efforts to manage the condition through careful diet, the increasingly agonising pain I suffered at ever more frequent intervals resulted from these inflamed pockets in my colon.
My journey to a hysterectomy began several years ago when, after numerous scans, I was diagnosed with a pedunculated fibroid on the outside of my uterus (a fibroid attached to the external uterine wall by a stalk). I was told that it was harmless and best left alone
After a particularly acute episode in December last year, I was taken by ambulance to hospital and pumped full of painkillers and antibiotics — appropriate treatment for diverticulitis.
But I remained weak and ill for weeks afterwards. While tests revealed a healthy colon, they also showed a large mass near my uterus. Initially I was relieved. Surely this was simply that pesky fibroid rearing its head once again?
However, my doctors didn’t like what they saw and were concerned by the fact that it had grown larger. I quickly — and terrifyingly — found myself in the gynaecology-oncology ward at Queen Charlotte’s Hospital in London. The speed with which the NHS moved in the midst of a pandemic was exemplary and, unable to rule out the possibility of malignancy, an operation date was quickly set.
As H-day approached, I sought to contain my mounting terror through frenetic activity. I filled in applications for courses I was interested in taking on top of my usual film directing work and exercised daily to get myself as fit as possible.
The 24 hours pre-op found me maniacally waxing my legs and dyeing my hair and eyebrows. I wanted to look my best for the operating table; after all, what if I died with hairy legs and unkempt hair?
Everyone kept telling me that this was a major operation. What did that really mean? The internet provided this definition: ‘an extensive, relatively difficult surgical procedure involving vital organs or in itself hazardous to life.’
Not for the first time, I wished I hadn’t answered the siren call of Dr Google.
A hospital stay is a sombre event at the best of times. During Covid and empty of visitors, my surgery ward felt sepulchral. There were four women in the room, each of us silently marooned on our individual islands of fear and pain.
I came round from the operation to find they had taken the lot out — a total abdominal hysterectomy — including the grapefruit-sized mass that had grown on my ovary, causing it to twist and turn, giving rise to the extreme pain I’d been suffering. (It turned out that this grapefruit-mass was not actually the uterine fibroid that those many scans had seemed to suggest. The uterus and ovaries are very close to each other and apparently an enlarged ovary can sometimes masquerade as a pedunculated fibroid.)
The question now remained as to whether it was sinister or not. Having survived the operating table, I had then to survive two weeks of uncertainty while waiting for the results of the pathology.
I spent four days in hospital before gratefully returning home to the loving ministrations of my family. But once home, I was assailed by the sense of my mortality as I lay awake night after night while the powerful wings of anxious thoughts beat loudly in my head.
Finally, I saw my surgeon, Mr Saso, and he uttered the two words every patient hopes for: ‘no cancer.’
And then he said: ‘You need to put this behind you psychologically and get on with your life.’
At the time, I was so liquefied by the relief that I didn’t have cancer I wondered what he meant. After all, my death sentence had been commuted and, once again, I had the promise of life ahead of me.
Everyone kept telling me that this was a major operation. What did that really mean? The internet provided this definition: ‘an extensive, relatively difficult surgical procedure involving vital organs or in itself hazardous to life’
As the days passed, however, new feelings emerged. I wasn’t prepared for the deep loss I would feel, the sense that I’d been drugged and abducted and had my body parts stolen from me. In just a few hours of surgery, I’d gone from a fit, active woman to a frail and shrivelled creature with an 18cm scar and a numb abdomen. I felt traumatised and changed by the experience.
Mr Saso’s first name is Srdjan, pronounced ‘surgeon’ — his destiny was clearly chosen at birth.
When I spoke to him in connection with this piece, he told me that when he was training, no one addressed the issue that you might be removing something that has real emotional resonance for a woman: ‘Any discussion of the psychological effects of hysterectomy was the elephant in the room, both for the male and female students.’
From the surgeon’s perspective, post-surgery, the attitude was, ‘if it’s not cancer, off you go and get on with it. And even if it was, then, ok, we’ve cut it out, off you go.’
He went on: ‘Any big operation is difficult to deal with psychologically. Add to that the concern that it may be cancer . . . these are difficult things to deal with for any human, whether male or female.
‘Then, from a woman’s perspective we are removing something that is intrinsic to her as a woman. So when I was training, I made a promise to myself that I would address this aspect of the patient’s femininity, because it can really affect them and it’s important for them to remember that what makes you a woman is made up of so many things and not just this organ.’ Someone later asked me how I felt about a man having performed this intimate operation.
I hadn’t considered this as I was happy that the roll of the NHS dice had given me such a skilled surgeon, one, incidentally, who works at the forefront of fertility sparing surgery and uterine transplants for women who once had no hope of reproducing. I wondered how Mr Saso felt about this? Being a man, he felt, was no obstacle.
‘How would my wife or mother want to be treated? That’s how I approach this,’ he said. I thanked him for his careful stitching, which has left me with a neat scar and he laughed, saying, ‘So many women talk about the scar, when that’s the least complicated part of it all.’
It’s true, we live in a society that is obsessed with appearance, youth and beauty, so perhaps it’s no wonder that this particular surgery carries a sense of shame. Mr Saso tells me that in some cultures, hysterectomy is so taboo that women refuse to have it at all, whatever the implications for their health.
I thanked him for his careful stitching, which has left me with a neat scar and he laughed, saying, ‘So many women talk about the scar, when that’s the least complicated part of it all’
I feel lucky to have had such a fine and empathetic surgeon who treated me as he would want the women in his life to be treated and greeted me on his morning post-operative ward rounds with the words, ‘Where is my queen?’, words that made me feel I had retained my feminine power. Lucky, too, for the fact that just four months later I am standing on my head once again in my yoga classes and am as fit and well as ever I was.
But I also feel sad. I grieve for my children’s ‘first home’ and wonder what it looks like ‘in there’ now. I feel that I have parts missing in some intangible way, that I’m not quite Olivia anymore.
So many of my female friends have now confessed their hysterectomies to me and, in the light of our close relationships, I’m astonished I didn’t know of them before — although I’m still coy about my own, particularly with men.
I say that I’ve had ‘major surgery’. People don’t ask and I don’t tell; perhaps they pick up from my tone that no further questions are welcome.
But I’m a member of this club now. And, even as I write this, a part of me wonders whether I should be ‘coming out’ in the pages of a national newspaper and whether that means people will look at me differently now that they know.