I’m sitting here ruminating on how to talk about how grieving childlessness morphs after a hysterectomy in a way that is engaging… I’ve always loved a challenge, but even so! I guess the first thing would be to tell you my story, so you have some idea about why I know about this topic because it’s not something that usually gets talked about, is it?
My dreams of having a family were, abruptly, ended during a 10-minute consultation in 2014. In a very blunt manner, I was told that I had stage four endometriosis and, that as a consequence, I wouldn’t be able to have children. Bang! That was that then, and so started my own drawn out grieving process.
As much as I would love to tell you that was the end of the story, we both know differently. Not content with having just one fertility-wrecking condition, my body then went on to develop adenomyosis. For those that have never heard of this condition (and you won’t be alone, I’d never heard of it either), it’s basically endometriosis within the muscular lining of the womb.
Yep, it’s as painful as it sounds, with near-constant backache and hip pain, that doesn’t let up no matter what position you try to adopt. It didn’t seem to be touched by painkillers either, with pain levels ranging from 3/10 to 12/10. It was a constant, daily challenge. So, the running I love was shelved, as was the living a normal life and my sense of humour…all gone.
But that’s nothing to the conversation I had in terms of the ‘solutions’ for this condition. I could
(a) do nothing (b) take tablets to induce a chemical menopause (c) have an endometrial ablation (burn away the lining of the womb) or (d) have a hysterectomy. It’s no exaggeration to say I felt like a contestant on Bullseye that could potentially win a speedboat, “Yeah but Jim, I live in land-locked Derbyshire…” – definitely a lose/lose!
Initially, I had the ablation which brought me 15 months of pain-free bliss but then, like the proverbial fart in the lift that keeps doing the rounds, the adenomyosis came back – only far worse this time. And so in November 2017, I had to say goodbye to my womb. A very different grieving process.
Now, I know I’m not alone in needing to have a hysterectomy and nor am I the youngest person to have needed one (honestly, my heart broke when I saw the Hysterectomy Association’s statistics showing that teenagers have needed to have this operation).
But what I did struggle with was the sheer lack of support for women having this operation, regardless of their circumstances. I mean this is a huge operation – in terms of not just a physical recovery (a year for the body to fully repair from a total abdominal hysterectomy), but also the emotional and mental recovery. It’s not the removal of an ingrowing toenail, this is the removal of the womb, potentially the ovaries and fallopian tubes. It’s a BIG bloody deal!
And there are a lot of us having this operation done. According to the National Women’s Health Network in the US, the second most performed operation carried out on women of reproductive age, is, yep you’ve guessed it, the hysterectomy. Research from the UK’s Hysterectomy Association shows that the US isn’t alone in performing this operation on high proportions of women, parts of Europe are proving to be no slouch. Compare the US and Germany on 0.3% of their respective populations to France, Italy and Finland on 0.2% and the UK on 1.8%.
But how many of them are in the same position in terms of not having had the family they dreamed of when they are informed they need this operation? I’ve no idea and neither does Google apparently. But, when we represent one in five women across the globe, that’s a sizeable chunk and a sizeable chunk that are left to their own devices in terms of their mental and emotional recovery. It doesn’t matter how you dice it, that’s unacceptable!
So, how does it feel to have to have a hysterectomy when that’s coupled with knowing you’ll never have the family you dreamed of? Nothing prepares you for being informed that you will need to lose your womb, regardless of the reason or your circumstances. But when you don’t have the comfort of having already had a family, it’s a kick in the misfiring privates and it punches a hole in your womanhood.
Because this isn’t just mourning the abrupt end to what should’ve been your fertile years. This is a mourning for the life that should have been yours, with a family and the health that should have been yours. This is a dawning realisation that you no longer have the part of your body that defines you as a woman.
This is the sheer crappy unfairness of it all, as you’re unceremoniously plonked into a shit-storm that has you questioning your femininity, your worth and your identity. This is your inner critic, going into overdrive as you look at all the evidence that proves how unworthy you are as you survey the physical and mental scars you’ve been left with.
Now, don’t get me wrong, I’m no Buddhist monk, and I can still feel bloody angry about this whole thing, but I can’t stay in that place. For me, while I knew I had to mourn the whole back story (and bear in mind I have been through counselling for the back story), I had to spend time with each aspect of this depression and that started with saying goodbye to my womb, including apologising and asking forgiveness for the damage I’d inflicted on it. Now that’s not to say I had any choice in these operations, I didn’t. But the map of scars across my abdomen shows the amount of abuse it had to contend with, before our physical divorce from each other.
This process of forgiveness also meant me re-owning my body and accepting that I would forever wear a battle scar to show where my womb stormed out of my life. And the first thing I did to start this process – I grabbed a bottle of coconut oil and started massaging that area. Not only does this help with the scarring, but it also means you have to acknowledge that area of your body. Don’t shut it out or off, because that denies your womanhood. Only then, could I start to process how I felt about my womanhood, now that Womb had left the building.
I had to shift from thinking of all of the things I’m not (according to society) and reassess what I think womanhood means to me. In essence, redefining and empowering myself, one small step at a time.
I’m not your girly-girl — never have been and never will be. I can’t abide pink, I love beer and watching darts. I’m not interested in make-up. And conversations about painting nails or eyebrow shaping put me into a coma. But rather than see myself as failing to measure up on the female scale, I simply think of myself as a warrior — one who’s battled her own demons to become a wise woman with a story to tell and support to offer others.
And there you have it, my vision of what it means to be a woman. I’d love to still have my womb and I would love to have a family more than anything, but sometimes life’s lessons mean embracing what you have and working with that to become empowered and to embrace your individuality.
Don’t get me wrong though, I could sit here and wax lyrical about how I’ve beaten it all, but I haven’t. I’m still working through it — the grief and the triggers. I am at least on my way towards the holy grail of acceptance, but as with all journeys, there are some false starts, some false dawns and a lot of retracing steps or starting over.
For me coming to terms with having the hysterectomy as a childless, infertile woman, meant coming to terms with the whole back story; forgiving myself and my womb in order to become the woman I want to be — according to my own measures, and no-one else’s.
Sarah attended one of Gateway Women’s Reignite Weekends a few years back and has since gone on to create After the Storm, a website and online Facebook community for the childless-not-by-choice. A qualified life coach and trainee counsellor, Sarah is childless herself due to endometriosis, adenomyosis and a subsequent hysterectomy. She understands how hard it can be to pick yourself back up after finding that you won’t be having a family and so shares her story to shine a light on this issue and also to provide support. She offers coaching to help people affected by this issue to embrace their confidence again and move towards empowerment. As she says, “No one has to do this alone and it might not be the life we dreamed about, but it can still be bloody amazing!” Her regular Facebook “Lives” are amazingly frank and a real breath of fresh air. Find out more at https://sarahlawrenceonline.com/
A great piece, thank you Sarah. I was also diagnosed with stage 4 endo (by a very blunt and unpleasant consultant, nearly a decade ago) and I do have the fear of adenomyosis at the back of my mind a lot of the time. Hysterectomy still tends to be misunderstood, dismissed and belittled as a ‘women’s problem’ – I myself had no idea of the magnitude of it and the potential issues arising from it until the last few years. It’s helpful to hear stories like yours. Wishing you all the best from a fellow non-girly girl
Sarah – It’s been a long journey since we met at Jody’s Reignite Weekend at the beginning of 2015.You have been through so much since that time, but congratulations on the website and the change in career. Your article was interesting to read and I am certain will help so many people on their own journeys of pain, loss and grief. Hope to see you again soon. xx
Hey Sami – I hope you’re well. Thanks for reaching out – it would be great to hear from you again to see how you’re doing. I can’t believe the Reignite Weekend was that long ago. Where has the time gone? x
Thank you for this, you had me in floods of tears reading this. I felt so connected and relieved that you spoke about it. I too am an infertile woman with hysterectomy as the end of my journey to the hope of a baby, this was 11 years ago and I have taken help and done much work on myself; at times it feels that I am good and have dealt with emotional scars of it but then there are times that I cannot think of anything else but that not alone that I am childless not by choice but also that I lost my womb and have the scar and also have other physical problems that follow that in years ahead (now for me) as I’ve been told that as my organs have dropped over my bladder (as womb supposed to separate it) now I starting to get incontinence and sticking of organs etc. I still feel grief when I pass the hospital where my womb was taken away from me and feel I never managed to say goodbye. Recently I decided to go ahead and have a tummy tuck as doing something for me to feel more of a woman to cover the scar of hysterectomy and cut that out to replace with scar of tummy tuck to make me feel it was my choice and it is yet for me to see if this helped.
This is such a taboo to talk about and many don’t understand the emotional and physical scars behind it.
Thank you Sarah
Thank you for taking the time to comment and to share your story. That took a lot of guts and I admire your bravery.
I don’t think the hysterectomy is the ‘cure’ that it’s sold as. It leaves a whole bunch of issues in its wake, but it does at least solve health problems for some of us.
I’m sorry to hear that you’re still having physical issues after the operation. I’m not a doctor, but can only share the advice I was provided with – pelvic floor exercises (NHS has a downloadable app you can have on your phone) and visceral massage on your abdomen helps with scar tissue and sticking.
I wish you the very best of luck with the tummy tuck – I hope it gives you the comfort you need and are looking for.
All the best, Sarah
Sarah thank you for being so open about this. Having a hysterectomy or the prospect of having one is such a silent affair, in fact I find myself whispering “I may have to have a hysterectomy” when ever I talk about my situation and recent adenomyosis diagnosis. It doesn’t help when the women (usually mothers) you confide in then go crazy at the the mere suggestion of having this procedure which silences us even more. I am undergoing a procedure in the summer and if unsuccessful the next step will be to have a hysterectomy. I’ve done my grief work around this and wrote a goodbye letter to my womb but I am so grateful to hear your story and know that I am not alone on this journey
My pleasure Yvonne. I know exactly what you mean with the reactions from other women – typically utter horror. Very best of luck with the procedure. I have everything crossed that it works for you, but you are definitely not alone in this if you have to take the next step. Wishing you all the best for the future.
Great blog Sarah, it’s weird that it’s not a subject much discussed when so many women have had a hysterectomy. It’s unfortunately a part of my journey as well. I was so glad when you said it takes a year to heal. So many women really think they will be back to normal in six weeks! Thanks for taking us in your journey. Wishing you continued healing physically, mentally, and emotionally.
Hi Civilla, thank you for commenting. The devastating physical and emotional impact of hysterectomy for childless women is something I hear about in private from members all the time, but it’s something that’s rarely spoken of publically… which is why I’m so grateful to Sarah for being open about this. I really hope it helps others who are struggling with this and feeling unsupported. Hugs, Jody x