Lotte’s Story
My uterus and I are breaking up This piece is dedicated to all the amazing women who went before me, giving me hope & support, and all women who are currently struggling with similar issues. You are amazing and strong!
Dear Uterus,
I am tired of looking pregnant when I am not. I am tired of living with crippling pain. I am exhausted from losing crazy amounts of blood every month. I am done with the dizziness and the constant anxiety. Every month for several days I want to curl up into a little ball, wishing for someone to knock me out and only wake me up once it’s all over again. It’s time for us to go our separate ways. I have never been a sickly person; I have always been healthy and active. I have always lived life to the fullest, travelled all over the world looking for adventures. Until 10 years ago that is, when my first fibroid was discovered. And man, how I miss those carefree days.
Fibroid sizes are often compared to fruit sizes; over the past decade, I have collected a whole fruit bowl. Ranging from a blueberry to a lychee, from a strawberry to an orange. The biggest one I’ve had was the size of a grapefruit; people started to congratulate me on my “pregnancy”, something which has happened often over the years. But it was always a fibroid pregnancy, never was I carrying a human baby. So can we please normalize not congratulating women on their pregnancies, or even asking women when they will have babies? Not everyone wants them, not everyone can have them. Some of us don’t just experience period problems that a painkiller and some chocolate can fix. That’s unpleasant, but something I could easily live with. My challenges have been far, far worse than that for a very long time.
Years before my diagnosis, the first doctor I saw for severe pelvic and leg pain missed the possibility of fibroids and gave me birth control pills. They actually helped for some years - but then all the pain was back, tenfold. I woke one morning surrounded in so much blood that it was as if an animal had been slaughtered beside me. Thereafter, this became my new “normal” monthly period. There have been times when it has been less extreme, in between surgeries when the doctors were able to (partly) remove a fibroid. But always, the horror was waiting in the shadows. And always, it returned.
I’ve had five invasive surgeries now, each time hopeful that this would be the turning point. Things would improve. I would get better. But that wasn’t the case, quite the opposite. Recent years have been the absolute worst. After my most recent fibroid surgery my doctor informed me that no further surgeries would be possible to try and safely remove these ugly myomas, so I faced a choice. I could either surrender to a sentence of excruciating pain and debilitating blood loss every 26 days for another decade or so until nature carried me past the menopause, or I could choose a hysterectomy now, at 41 years old. I had known, intellectually, that this day might come. But still, the stark finality of the options I am faced with came as a complete shock.
To live with fibroids would mean continuing to endure the pain and indignities that have haunted me for years. Wearing adult diapers – yes, the ones you see in old age homes – for days a month. And even with these diapers, still not being able to leave the house for 30 minutes. For days I would sometimes just collapse and retreat, burned out both physically and mentally. Working from bed with my laptop, hot water bottle, painkillers, and heaps of beach towels to cover the mattress. I would say no to all sorts of invitations, or cancel last minute, because cycles are unpredictable, and I would never quite know if I could definitely make it.
During our travels, I’d often find myself confined to bed while others enjoyed a safari or a dive. Living like this is beyond draining. It really takes away your lust for life to have to powerlessly plan everything around a fluctuating moon cycle calendar. So, the only other option left is a hysterectomy. But even though my uterus has mainly brought me extreme pain and discomfort it still hurts as I prepare to say goodbye. Why is that? I met my husband later in life and although, growing up, I always assumed I would be a mother, in recent years we realised that we probably don’t want children. We love our lives; we have a beautiful garden, loving and loyal fur babies, and we get to travel whenever we want. We stay in luxury lodges, love wining and dining and we are blessed with many kind friends and loving families. The older I get, the more I enjoy other people’s kids, alongside the ability to hand them back and enjoy my book and quiet time with a good glass of wine. I am comfortable with the idea of being a fun aunt who goes on cool trips, rather than being someone’s mother. But despite all this, I found myself sobbing when the reality hit me that a hysterectomy is now the only remaining option.
Even though I don’t want to have children of my own, I am apparently still attached to the idea of having a womb. Why is that? Is it possible to grow attached to something that brings you so much suffering? I guess it is. Or perhaps it’s that tiny bit of hope left. Hope that maybe one day the fibroids would magically shrink. But believe me when I say I have tried it all. Cutting out dairy, red meat, sugar, alcohol – and for those who know me, that was tough for someone who loves and studies wine. I’ve had acupuncture, always done lots of yoga and meditation, tried all sorts of health supplements and herbal teas. And of course, the surgeries.
All those surgeries. Do I struggle with this because having a womb makes one a woman? Yet whenever I have spoken to other women who had a hysterectomy, I would describe them as feminine. In fact, they all are strong and beautiful women. Even just the word hysterectomy evokes strong emotions. It symbolizes the end of fertility yes, but why do we often consider it to be the end of femininity? This negative connotation is worrisome as a hysterectomy in my case also represents liberation from intense pain, extreme blood loss and anxiety.
Some hysterectomies even save lives. We are more than our uteruses - so why does this situation still make me burst into tears when I least expect it? Maybe it’s a process of grief. A very unexpected grief but nonetheless one that is devastatingly real. When I think about my life post-hysterectomy, I do notice a flicker of a smile appearing on my face. The prospect of grabbing life by the reins again, the thought of living life to the fullest makes me realize I need this surgery. Life is too short to be in bed crying and cursing my uterus. In fact, I’m beginning to realize that a part of me loves the idea of the upcoming hysterectomy. Not the surgery itself, obviously, but the thought of getting this hateful thing out of my body. The idea of donating my big adult diapers to an old age home.
Now that I have opened up about this, now that I have spoken to others, I’ve learned that many have, or have experienced, similar struggles. It has helped to talk, it has helped to listen. The weight of this situation genuinely feels a little lighter now that I have found my tribe and learned to open up to people who are there for me. And so, Dear Uterus, with a heavy but hopeful heart, I must bid you farewell. It’s not me. It’s you. We just weren’t meant to be. And while it breaks my heart to say goodbye, I know I’m going to be okay. More than okay, in fact: the carefree days I have craved for so long are now just around the corner. Love, Lotte