My Adenomyosis Story: The Pain I Was Told Was Normal

Where it began — late periods and constant bleeding

My periods started late. When they finally arrived, they did not behave the way I expected them to. Rather than coming and going, I bled almost constantly. It was relentless, and at the time nobody seemed especially concerned about why. The answer I was given was the answer so many young women are given: I was put on the pill.

And it helped. That is the honest truth of it. The bleeding settled, my cycle became something I could rely on, and life carried on. I did not question it. I had a solution that worked, and I had no reason to think there might be something underneath it that the pill was quietly covering over. I stayed on the pill for years, right up until my husband and I decided we wanted to start a family.

Becoming a mum — the first arrival

When we decided to try for a baby, I came off the pill, and it happened quickly — within about six weeks I was pregnant with our first child, a son. I felt incredibly fortunate. The pregnancy itself went well, but the birth did not go as planned. He simply would not come naturally, and in the end he was delivered by emergency caesarean.

What followed was the most frightening part. He was born with a group B strep infection — even though I had tested negative for it myself — and spent his first three days in intensive care. As a new mother, that is not how you imagine your first days with your baby. He came through it and he was perfect, and those three days left a mark on me only because of how completely I already loved him. I want to be clear about that, especially for my boys should they ever read this one day: the fear was only ever the size of the love. He came home to us, he thrived, and he remains one of the very greatest joys of my life.

Once we were home and settled, I went back on the pill for around eighteen months. When we felt ready to try for another baby, I came off it again. And here is something I want to be clear about, because it matters to the rest of this story: at this point in my life, I did not have painful periods. Not at all. Whatever was beginning to take shape in my body was not yet announcing itself in the way it eventually would.

The losses nobody investigated

About three months after we started trying again, I fell pregnant. At thirteen weeks, I miscarried. Because it was my first loss, there was no investigation — that was simply how things were done. You were expected to grieve quietly and try again.

So we did. Two months later, I was pregnant once more. This time I miscarried at nine weeks. And again, there was no investigation, because at that time the NHS did not begin looking into recurrent miscarriage until a woman had experienced three in a row. Two losses, back to back, and still the answer was to wait and see if it happened a third time before anyone would ask why.

I want to pause here, because this part of the guidance has since changed. The UK has moved towards what is called a graded model of care: women are now offered information and support after one miscarriage, an appointment at a miscarriage clinic for initial investigations after two, and a full set of investigations after three. The definition has also been widened to include losses that are not consecutive. None of that was available to me at the time — but I mention it so that anyone reading this who is going through the same thing knows that the door to answers can open earlier now than it did for me. If you have had two losses, you are entitled to ask.

Two miscarriages, and not one person asked why. I was told to try again, as though grief and uncertainty were simply part of the deal. It would be years before I learned there might have been a reason all along.

Completing our family

We tried again, and this time the pregnancy held. Our second son was born by elective caesarean — a planned operation, chosen because of everything that had happened with my first birth. He arrived safely and well, and our family felt complete. After two losses, holding a healthy baby in my arms felt like nothing short of a miracle, and I have never once taken it for granted. I know how fortunate I am. I have two healthy boys, and after everything it took to bring them here, they are — without any question — the thing in my life I am most grateful for. If they are reading this one day: you were wanted more than words can hold, and every part of it was worth it.

My husband then had a vasectomy, and around six months later I came off the pill for what I assumed would be the last time. I had no reason to expect what came next.

When the pain began

It was after I came off the pill that the painful periods started. Not gradually at first — they simply began, where before there had been nothing. And like so many women, I did what we are all taught to do: I accepted it. I told myself this was just what periods were, that I had been lucky for years and now I was experiencing what everyone else apparently put up with. Painful periods are so normalised that it never occurred to me they might be a signal of something.

What I did not appreciate at the time was that the pain was not staying the same. Every month, it was a little worse than the month before. It crept up on me so slowly that I kept recalibrating what I considered normal, adjusting my own baseline without ever stepping back to see the overall direction it was heading.

Years of just coping

For around six years, I simply coped. I was working full time, raising two boys, running a household — and quietly, every month, dealing with a pain that was steadily growing. Eventually I went to the doctor, and the suggestion was to go back on the pill.

But something in me resisted. I had spent years on the pill, and I had a strong feeling that putting myself back on it would only mask whatever was actually going on — that it would hide the symptom without ever telling me the cause. I tried it for a few months, but I came off it again because I was uneasy about what it might be doing and what it might be concealing. So I went back to managing on my own: painkillers and a heat pad, three days a month, gritting my teeth and getting on with it.

I kept it largely to myself for another couple of years. That is the part I find hardest to look back on now — how much I carried silently, how normal I had made it seem to everyone around me, including myself. It was only when the painkillers and the heat treatment simply stopped working that I finally went back and pushed for something more.

The diagnosis — a word I had never heard

That was the point at which my doctor agreed to a scan to investigate properly. And that is when I was told I had adenomyosis — a word I had never heard in my life.

For anyone in the same position: adenomyosis is a condition in which the tissue that normally lines the womb grows into the muscular wall of the womb itself. It causes heavy, painful periods and chronic pelvic pain, and it is significantly underdiagnosed — many women spend years being told their symptoms are normal before anyone names it. You can read a fuller explanation in my companion post, What Is Adenomyosis.

At the time, though, I was given very little. I was told I had it, and that it could be treated with the pill, or a coil, or — if it became bad enough — a hysterectomy. That was more or less the extent of the explanation. No real sense of what it was, why it had happened, or what living with it might mean. So I did what I had always done. I ploughed on, this time with stronger painkillers for the three days each month I most needed them, all the while quietly worried about becoming dependent on them.

The connection nobody had mentioned

For years I coped that way. And then the pain changed again. It was no longer confined to my period. It became something I felt almost every day of the week — sometimes just a background presence, sometimes so extreme that I would be crying and bent over, unable to function at all. I had reached a point where I simply could not carry on as I was, so I went back to the doctor and was sent for another scan to see whether things had worsened.

It was during that internal scan that something happened which has stayed with me. The person carrying out the scan asked, almost in passing, whether I had ever had caesarean sections. I said yes — two. And in that moment, for the first time, a thought landed that had never once occurred to me in all those years: could my caesareans have had something to do with this?

I want to be careful here, because the science is not settled. Some research has looked at whether uterine surgery — including caesareans and procedures like a D&C — might play a part in adenomyosis developing, but the evidence is mixed and far from conclusive. I am not a doctor, and I cannot tell you that my caesareans caused my adenomyosis. What I can tell you is that in all the years of appointments, scans and conversations, not one medical professional had ever raised the possibility with me. It took an offhand question during a scan for me to even begin joining the dots about my own body.

My results came back, and the message was much the same as before: it confirms you definitely have adenomyosis. And that, once again, was it. So I went back — again — and this time I asked directly. What are my options? Because I cannot live like this. I have no quality of life.

The decision — choosing a hysterectomy

That was the conversation in which we finally discussed a hysterectomy properly. I was in my mid-forties. Our family was complete. I had spent the better part of a decade managing a pain that had grown from an inconvenience into something that was stealing my days from me. Weighed against all of that, the decision, when it finally came, did not feel like a drastic last resort. It felt like the first real chance at getting my life back.

So I chose to go ahead with the surgery. If you want to read what came next — the operation itself and the long, honest reality of recovery — I have written about it separately in Hysterectomy Recovery: What Nobody Tells You.

What I know now — for anyone earlier in this journey

There is one more piece to this story, and it is the part that still makes me catch my breath a little. After my diagnosis, I joined some Facebook groups for women living with adenomyosis. It was there — not from any doctor — that I learned my two miscarriages may well have been linked to the adenomyosis all along.

The research on this is still developing, but there is growing evidence that adenomyosis is associated with a higher risk of miscarriage, including recurrent loss. The UK pregnancy charity Tommy's is actively researching exactly this link. I cannot know for certain whether it explains my losses. But to discover, years later and from other women rather than from a clinician, that there may have been a thread connecting my miscarriages to a condition I was never even told I had — that is a hard thing to sit with.

So here is what I would want anyone earlier in this journey to take from my story.

Painful periods are common, but they are not something you simply have to endure. Pain that stops you functioning, that grows month on month, that needs stronger and stronger painkillers — that is your body telling you something. You are allowed to take it seriously even if others do not.

The pill is not the only answer, and you are allowed to ask what is underneath. It may genuinely help, and for many women it does. But if you feel, as I did, that it is masking something rather than explaining it, you are entitled to ask for investigation rather than just management.

Ask for the scan. Adenomyosis is diagnosed through imaging — usually a transvaginal ultrasound, sometimes an MRI. If your pain is not being taken seriously, asking specifically for a scan to investigate can be the thing that finally moves you forward.

You can ask questions your doctor has not raised. I went years without anyone mentioning a possible link between my caesareans and my condition, or between my adenomyosis and my miscarriages. You are allowed to ask "could these things be connected?" — and to keep asking until you get a proper answer.

Find your community. Some of the most useful, honest information I ever received came not from a clinic but from other women in Facebook groups who had lived it. They will not replace your doctor, but they will confirm that what you are experiencing is real, and they will tell you the things nobody else thought to.

You are not making a fuss. Pushing for answers about your own pain is not being difficult. It is healthcare. I wish I had pushed sooner, and I wish I had not spent so many years quietly deciding that this was simply my lot.

And there is one last thing I want to say, because it is the truest part of all of this. For everything I have written here — the pain, the losses, the years of being unheard — I count myself among the lucky ones. I have my two boys. So much of this story is about how hard the road was, but I would walk every step of it again, without hesitation, for them. If anything I have shared helps another woman get answers sooner, then it has done its job. But I never want it to be read as a story of regret. It is, in the end, a story about how much can be carried for the people you love most.

One small thing came out of all of this that I did not expect. Going through years of being unwell — and then surgery and recovery — made me acutely aware of how much of our family's life lived only in my head. The appointments, the history, the information that I, as the one who quietly held it all together, had never written down anywhere. I started putting it all in one place, partly for my own peace of mind. That is, in many ways, where JINC began.

Common questions

Adenomyosis, honestly answered

What is adenomyosis?

Adenomyosis is a condition in which the tissue that normally lines the womb (the endometrium) grows into the muscular wall of the womb itself. This can make the womb larger, heavier and tender, and it typically causes heavy, painful periods and chronic pelvic pain. It is closely related to endometriosis but is a distinct condition. Adenomyosis is significantly underdiagnosed — many women spend years being told their symptoms are normal before it is identified. You can read a fuller explanation in my companion post, What Is Adenomyosis, or visit Endometriosis UK.

Is daily pain — not just period pain — normal with adenomyosis?

For many women adenomyosis pain centres around their period, but it can also become more constant. In my own case the pain eventually moved from being confined to my period to being present almost every day, ranging from a background ache to episodes so severe I could not function. Pain that grows month on month, that needs stronger and stronger painkillers, or that begins to affect your daily life is worth taking seriously and investigating — it is not something you simply have to live with. If your symptoms are escalating, it is reasonable to go back and ask for a scan.

Can caesarean sections cause adenomyosis?

This is something I only began to wonder about years into my journey, when a sonographer asked whether I had had caesareans. The honest answer is that the science is not settled. Some research has explored whether uterine surgery — including caesarean sections and procedures such as a D&C — might play a role in adenomyosis developing, but the findings are mixed and no firm conclusion has been reached. It is a reasonable question to raise with your doctor, but at present it cannot be said with certainty that caesareans cause adenomyosis.

Can adenomyosis cause miscarriage?

There is growing evidence that adenomyosis is associated with a higher risk of miscarriage, including recurrent pregnancy loss, although research in this area is still developing and a great deal remains unknown. I learned about this possible link years after my own two miscarriages — and from other women rather than from a doctor. The UK pregnancy charity Tommy's is researching this connection directly. If you have experienced pregnancy loss and have adenomyosis, it is a question worth raising with your clinician.

How many miscarriages before the NHS investigates?

When I had my losses, the NHS did not begin investigating recurrent miscarriage until a woman had experienced three in a row, which is why my two miscarriages were never looked into. This guidance has since changed. The UK has moved towards a graded model of care: information and support are offered after one miscarriage, an appointment at a miscarriage clinic for initial investigations after two, and a full set of investigations after three. The definition has also been widened to include non-consecutive losses. If you have had two miscarriages, you are now entitled to ask for initial investigations.

How is adenomyosis diagnosed and treated?

Adenomyosis is usually diagnosed through imaging — most commonly a transvaginal ultrasound, and sometimes an MRI, which can show changes in the wall of the womb. Treatment depends on how severe the symptoms are and whether you have finished having children. Options range from pain relief and hormonal treatments (such as the combined pill or a hormonal coil) to, in more severe cases, a hysterectomy, which is the only definitive cure. The right path is an individual decision to make with your doctor. In my case, after years of escalating pain and having completed my family, I chose to have a hysterectomy.

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