Hello loves, how are you today?

If you’re new here, I’m Lorraine, and today’s episode is a bit different. It’s personal. Last week marked four years since my hysterectomy, and I want to talk about it. Not because I think everyone needs to know my medical history, but because I think there are conversations we don’t have enough about chronic illness – about grief, about choice, about what it means when your body makes decisions for you.

Let me take you back. I’d known since my early thirties – so well over ten years – that I probably couldn’t have children. Gynaecological complications, issues that just kept compounding. It wasn’t a surprise, but knowing something intellectually and having that door definitively close are very different things.

By the time I was approaching my hysterectomy, I had what I called my tumour belly – growths that had grown so large I looked heavily pregnant. The backache was relentless. My ME symptoms were getting worse because of it. And I had a choice, sort of: get the surgery, or keep getting bigger and watch my chronic illness spiral.
COVID delayed the surgery. So I lived with that growing belly, that increasing pain, that worsening fatigue, for longer than I should have. By the time I finally had the operation, I was 44.

The decision – and the lack of it

Here’s something people don’t always understand: this wasn’t really a choice. People have told me how brave I am, as if I heroically decided to do something difficult. But what was my alternative? Keep the growths and let them destroy my quality of life? Let my ME symptoms spiral out of control? Stay in bed wallowing in self-pity about the situation?

That’s not bravery. That’s just… dealing with what is. And I think that’s something we need to talk about more with chronic illness – so much of it isn’t about choice. It’s about accepting what your body is doing and figuring out how to live the fullest life possible within those constraints.

Yes, I could have chosen to wallow. I could have given up. But that’s not who I am, and frankly, that’s not who my ideal clients are either. We’re the women who keep going, who adapt, who refuse to let chronic illness define the limits of our lives even when it absolutely affects those lives.

The surgery and recovery

The surgery itself was necessary – urgent, even. The tumour size meant it was only going to get worse. But here’s what they don’t really prepare you for when you have ME and you’re having major surgery: the double whammy.

Post-operative fatigue is real for everyone. Your body has been through trauma, it’s healing, you need rest. But when you add ME fatigue on top of surgical recovery fatigue? It comes at you from all angles. You can’t tell which exhaustion is which. You can’t separate “normal recovery tiredness” from “chronic illness fatigue” from “hormonal chaos”. It’s all just… overwhelming.
Recovery was harder because of the ME. Everything was harder. And there was no way to know if what I was experiencing was normal or whether my body was struggling more than it should have been.

The hormonal reality

Before the hysterectomy, I could take the contraceptive pill continuously – three cycles at a time – to control my hormones and how they interacted with my ME. That was a lifeline. It meant I could predict my symptoms, manage the worst of the hormonal fluctuations, have some control.

I can’t do that anymore. And I’m not going to pretend that’s fine – it’s not. I live with it now because I have to, not because it’s ideal. I’m on HRT, which helps, but PMS is still PMS. I track my cycle obsessively now, trying to make sense of why some days my orthostatic hypotension is worse, why my mood swings, why everything feels harder. Usually, it’s hormones.
I lost a significant management tool when I had that hysterectomy. The relief of no longer bleeding, no longer dealing with all that aggravation, is real. But so is the loss of hormonal control. Both things are true.
The emotional complexity

I knew, logically, that I’d still be a complete woman after the surgery. I understood intellectually that my worth wasn’t tied to my uterus. I’d told many women this myself when I used to work in gynae oncology. But emotionally? That was different. Much harder than I expected.

The baby grief hit me afterwards, and it hit hard. Hard enough that I had nearly a year of grief counselling to process it. Because even when you’ve known for over a decade that you probably can’t have children, even when you’ve supposedly made peace with it, having that door close permanently does something to you. The finality of it was overwhelming in ways I hadn’t anticipated.

A couple of years later, I met my partner – well, met him again – and now I have three stepchildren who I love. But at the time of the surgery and in those months afterwards, I was processing that grief basically alone, without knowing that a different kind of family was waiting for me.

And here’s something that still catches me off guard: the assumptions. 

So many people, mostly women, assume that if you don’t have your own children, you must not like children. Or that you chose career over family. Or that you’re somehow less maternal, less nurturing, less… womanly.

Whereas we all some people that have grown children inside them and given birth, but that doesn’t mean they’re great mothers, that doesn’t mean that they’re maternal, that doesn’t mean that if they could go back in time and do it again that they would still have them.

The women making assumptions don’t know that it wasn’t a choice. They don’t know about the years of complications, the tumour belly, the impossible situation. And most of the time, it’s not their business. But those assumptions can still hurt.
The myths and options

I think one thing that’s not discussed enough is what your options actually are. Not everyone facing a hysterectomy knows that there are different types, different approaches, that you can sometimes keep your ovaries, that the recovery process varies enormously depending on what’s done and how.

If you’re facing this decision – or if chronic illness is forcing this decision on you – please ask all the questions, regardless of the type of operation you need to have. Understand exactly what’s being removed, why, and what the long-term implications are for your hormones, your symptoms, your overall health. Don’t just nod along because you feel overwhelmed. Part of the doctor’s knowledge is to be able to answer your questions. If you feel you can’t ask them the questions, ask for a second opinion. Take some time away to think about if you asked the right questions, or if you didn’t phrase it properly. I would often have women call me up after their appointments asking questions so I could ask the consultant those questions and get back to them. Once you’ve left the appointment it doesn’t mean that’s the end of the information for you.

Living fully without choice

Here’s what I’ve learned over these four years: chronic illness takes choices away from us. It just does. I didn’t choose to develop ME 15 odd years ago. I didn’t choose to grow these things. I didn’t choose to need a hysterectomy at 44. I didn’t choose to lose the ability to control my hormones the way I used to.

But I do choose how I respond. I choose to keep working, keep living, keep building a life that feels full even within these constraints. I choose to track my cycle so I can understand my body rather than feel confused by it. I choose to talk about this honestly so other women know they’re not alone in the grief, the relief, the complicated mess of feelings that comes with major surgery and chronic illness.

Was the hysterectomy the right choice? Yes. Absolutely. Even with all the complications, all the grief, all the losses that came with it. Because the alternative was worse. My quality of life is better now than it was with the tumour belly and the constant bleeding and the worsening symptoms.

But “right choice” doesn’t mean “easy choice” or “grief-free choice”. It just means it was the best option in a situation where I didn’t have many good options.

This is what living fully with chronic illness often looks like.

Making the best of situations you didn’t choose, grieving what you’ve lost whilst celebrating what you’ve kept, adapting constantly to a body that keeps changing the rules.

You’re not brave for dealing with it. You’re just dealing with it. And that’s enough. That’s more than enough.

Four years on, I’m still learning to live in this body. I’m still tracking cycles, managing symptoms, figuring out what works. I still have days where the grief catches me unexpectedly, and days where I feel nothing but relief that the tumour belly is gone.
Both things can be true. Multiple things can be true at once. You can grieve and be relieved. You can wish things were different and know you made the right choice. You can be angry that you didn’t have better options and grateful for the life you’re building anyway.

If you’re facing a hysterectomy, or any major medical decision because of chronic illness, or alongside chronic illness, know this: your feelings will be complicated, and that’s okay. The grief is real, even when the choice is right. And you’re not less of a woman, less brave, or less anything because your body made decisions for you.

You’re just living your life, as fully as you can, with what you’ve got. And that’s what we do here.

Thanks for listening to this very personal episode of the Life in Align podcast.

And remember, you are worth it, and you get to choose.

Have a lovely day.