Before My Hysterectomy: The Fear, the Wait, and How JINC Began

Getting my date — and starting to plan

After everything it had taken to be heard — the years of pain, the dismissals, the long road to a diagnosis I have written about separately in my adenomyosis story — I finally had a date for my hysterectomy. Because of the waiting lists in my area, I was referred to a private hospital, which meant things could move more quickly.

I am self-employed, so there was no HR department to arrange cover and no sick pay to fall back on. Planning fell entirely to me. I arranged for my work to be wound down and completed by the weekend before the operation, so that I could go into surgery with everything tied off and nothing left hanging over me. I was organised. I was ready. Or so I thought.

The list in my head

It was during that planning that something began to nag at me. I started thinking about all the things my family would need while I was out of action — the ordinary, invisible running of a household that, I realised, lived almost entirely in my head. How the washing machine worked. When the bins went out. The bits and pieces that nobody else had ever needed to know, because I had always just done them.

At first, that was the whole of it: a practical list so that life could tick over for a few weeks while I recovered. Nothing more dramatic than how to keep the house running without me for a little while. I had no idea that the list was about to become something far bigger.

The story that changed everything

Like anyone would, I read up on the hospital and the operation before I went in. And in the course of that reading, I came across a story about a woman around my own age who had died after the same operation I was about to have.

I know now — and I knew even then, somewhere rational — that serious complications from this surgery are rare, and that I had stumbled onto the very worst possible outcome. But knowing something is rare does not stop your mind from running. I had always been vaguely aware that any surgery carries risk; you sign the forms, you nod along. But you never really let yourself believe it could be you. Reading that story made it suddenly, horribly real. For the first time, I let myself think the thought I had been carefully avoiding: what if I do not come home? What happens to them then?

I had been writing down how to use the washing machine. After reading that story, I realised I needed to write down everything — not just how to keep the house running for a few weeks, but everything my family would need if I were not here at all.

Writing everything down

That was the moment my practical little list stopped being practical and became something else entirely. I went, almost overnight, from noting down how the washing machine worked to documenting where everything was and everything my family might need if the worst happened and I was no longer here.

The passwords. The accounts. The policies and paperwork. The contacts. The hundred small things that only I knew, that would leave my husband and my boys searching in the dark at the worst possible time. Once I started, I could not stop seeing how much of it there was — and how completely it had only ever existed in my memory.

Then came the practical question: where should it all live? A spreadsheet? A Word document? A notebook they could simply pick up? I wanted it to be something they could find and hold, not a file buried on a computer that nobody could get into. And then a better thought arrived: why not make a proper book to keep it all in — something calm and clear and complete, rather than scraps and panic. So I started creating one.

The messages I needed to leave

As I worked through every aspect of our life, putting it all down, something stopped me in my tracks. I thought about my youngest son's thirteenth birthday, which was coming up the following year. And the thought landed with a weight I was not prepared for: if I am not here for it, how will he know what I wanted to say to him?

That changed the book again. It was no longer only about passwords and policies and where to find the insurance documents. It needed to hold the things that actually mattered most — the words. Messages to the people I loved. The things you assume you will always have time to say, until you are forced to consider that you might not.

I want my boys to know, if they ever read this: I was not being morbid. I was being a mother. Writing those messages was not me giving up — it was me making absolutely certain that, whatever happened, they would never have to wonder how loved they were.

How JINC began

I designed the book, and I had a single copy printed to use myself. It was only ever meant to be mine — a private answer to a private fear. But when I mentioned it, friends told me they wanted one too. They felt the same quiet weight I did, the same sense of being the only person who knew where everything was.

And that was the moment a thought I had not expected arrived: why not see if I could turn this into something real? A beautiful, guided place for anyone to put everything down, just in case. That is when JINC was born — out of fear, yes, but really out of love, and out of the refusal to leave the people I love unprepared.

Cancelled, twice

The very day I finished work — everything wound down, handed over, ready — my phone rang. My operation, due to take place three days later, had been cancelled.

There was no going back to work; they had already replaced me. My new date was nearly two months away, with Christmas falling in between. So I poured myself into JINC instead. And here is the honest, complicated truth of it: I had not been coping with full-time work for a long time because of the pain. So although being out of work was frightening financially, there was also relief in it. For the first time in years, on the days the pain hit hardest, I could simply stay in bed. By then I was reaching nine or ten out of ten on most days. Rest was not a luxury — it had become a necessity.

The second date came. The day before the operation, I had finally let myself accept that this time it was really going to happen. Twenty-four hours before I was due to go in, the phone rang again. Cancelled, again. I broke down. I simply did not know how I was going to keep going until whenever the next date might be. This time, at least, the wait was shorter — only three weeks.

And then it was third time lucky. It finally happened.

The surgery — and what they found

The operation went ahead at the end of February. When it was over, my surgeon told me it had gone well. He had removed exactly what we expected — the adenomyosis — but he had also found a great deal of scar tissue from my two caesareans, and, to my surprise, endometriosis, which I had never been diagnosed with before. Three conditions, quietly overlapping, that between them explained so much of what I had spent years being told was normal.

I came round from the anaesthetic in the late afternoon and was back with my husband within the hour. I did not sleep at all that first night — but I was through it. After all the waiting, the cancellations and the fear, the thing I had braced for so many times was finally behind me.

The first two weeks — kept day by day

I kept a day-by-day diary through those first two weeks, written in my own JINC journal. I will not share every line, but here is the honest shape of it.

The first few days. The pain, to my relief, was not as bad as I had feared — managed at first with co-codamol and a little morphine the first night, then co-codamol alone, then tapering off faster than I expected. I had only three small incisions. The unglamorous truth of early recovery is that a great deal of it revolves around your bowels: laxatives, waiting, and a quiet sense of triumph when things finally moved. A pregnancy pillow turned out to be the single best thing I took home — I slept far better with it than I had any right to.

Finding my feet — and overdoing it. By the fourth or fifth day I had stopped the pain medication altogether and was walking a couple of minutes around the house. Then, feeling capable, I went to the printers — half an hour in the car, a little time in the office, the drive back. I overdid it completely. The pain returned, I needed medication again, I had to sleep in the afternoon, and I was left with a headache behind my eyes. It was my first real lesson that feeling better and being better are not the same thing.

The second week. I had good days and days that knocked me straight back to bed. I managed short, very slow ten-minute walks with the dog, and felt proud of them — then went straight to bed afterwards. I was still wearing my surgical stockings, which kept rolling down, and I was getting sweats a couple of times a day as my body began its abrupt shift into surgical menopause. There was a burning, heavy feeling in my pelvis that came and went, worse after sitting up for any length of time — an hour with the kitchen designer, a little work on the laptop in bed — and I learned to read it as a signal to stop. By the end of that fortnight I had decided not to push the walks any further for another week. My body was setting the pace now, not me.

Back to work — from my bed

I returned to work in my third week after surgery. By that point I had been out of work for four months, between the cancellations and the recovery, and I simply could not be out any longer. I had taken a remote, work-from-home role, and that was the only thing that made it possible. The first few weeks were mostly learning the ropes — something I could just about manage propped up in bed, laptop balanced in front of me, resting when the burning, heavy feeling came back.

It was not a clean, triumphant return. It was managed, careful, and done largely horizontally. But it was a beginning — and recovery, I was learning, is made of beginnings like that, not finish lines.

What came after — the longer, slower, far less linear road of recovery at the three-month mark — is a story in itself, and I have written about it honestly in Hysterectomy Recovery: What Nobody Tells You. If you are somewhere in the middle of your own journey, I hope reading both halves of mine helps you feel a little less alone in it.

And JINC — the thing that grew out of my most frightened moment — is still here, and still growing. It remains the truest answer I know to a simple, uncomfortable question: if you were suddenly not here, would the people you love know where to find everything, and would they know what you wanted to say to them?

• My Adenomyosis Story
• Hysterectomy Recovery — What Nobody Tells You
• Understanding Endometriosis
• 10 Things Your Partner Should Know
• The Mental Load
• Life Admin — Why It Feels So Overwhelming