On being diagnosed with endometriosis (part one)

How on earth did I get here?

Friends, this is the most vulnerable I’ve felt pressing publish in a long time.

As you can tell from the title, I’m sharing the story of my recent endometriosis diagnosis — what led me to finally book the surgery, what they found and why I didn’t see it coming, even after more than a decade of working in menstrual cycle awareness.

If this is your first time here — hi, I’m Claire. I’m a women’s coach, author and menstrual cycle awareness teacher. The female body is at the centre of my work, which makes this post feel both deeply personal and professionally important.

I have a lot to say and this won’t be the only time I write about it. Today, I’m focusing on the path that led me to surgery. If you’re navigating chronic pain, considering surgery or trying to make sense of your symptoms, I hope this helps. Please share it with anyone who might benefit.

Part two is where I’ll share what happened after I got medical support and how I’ve been processing the diagnosis, including the anger I’ve felt toward both the medical and spiritual-wellness worlds when it comes to the female body. Strap in.

Last month I had laparoscopic surgery to potentially diagnose and treat endometriosis. Going in, I had two fears: that nothing at all would be found or that they’d find something fatal.

My journal entry from the night before reads:

What if they find no endometriosis at all? Maybe my symptoms aren’t that bad and I’m being weak/dramatic. Or maybe it’s something more sinister — like bowel cancer. I don’t actually think it is, but there is something going on with my bowel.

Fear was doing what it does best, implying it could go only one of two ways: it’s either everything is wrong or nothing is wrong. My rational mind countered: relax Claire, it’s most likely a little bit of endo.

What I didn’t expect to hear was: severe endometriosis, stage four.

What I didn’t expect was for the nurse to bend over my bed as I was waking up from the anaesthetic and whisper, Oh honey, you’ve been in pain for a long time, haven’t you?

What I didn’t expect was to be told that my internal organs are stuck together.

My bowel fused to my uterus.

My ovaries hidden, tubes obscured by adhesions.

My surgeon to describe it as a particularly messy pelvis.

Severe stage four endometriosis. And inoperable.

Yeah. Inoperable. My surgeon went in, removed a cyst and a small polyp in my uterus, and then he came back out. To go any further, he’d need a colorectal surgeon with him because there’s a chance that in order to unstick my organs, I would need to have a bowel resection — part of my bowel removed.

I took this photo in my childhood bedroom post-surgery: for posterity and as a reclamation.

Alongside my fears, I’d set three intentions for the surgery: Relief. Clarity. Fertility. In my journal the night before, I wrote:

I want to feel at home in my body again. It’s become a stiff, swollen, tired body — I want to feel vital, energised, and to have the desire and capacity to really move, sweat, build strength and flexibility again. I want to release my pelvic bowel from this pain. And clarity, on WTF is going on. To know what it is, for a clearer path forward, for treatment and peace of mind, to inform decisions, to release the energy taken up by the not-knowing. And for our baby, to make the baby room ready for bub. To clear out anything getting in the way of blocking implantation and their sweet arrival.

Now, just over a month post-surgery, I’m sitting in the aftermath. June was a wild month of grief, anger, exhaustion, and some pretty big medical decisions. I have been, how shall we say… processing. And wondering, how on earth did I get here?

As I always say to my clients: let’s go back to menarche. I didn’t just wake up with severe endometriosis — as my surgeon says, I’ve likely had some form of it my entire reproductive life (!!!).

And so. We look back.

I didn’t experience painful periods as a teenager, but I also only had about a year of cycling naturally before going on the pill at 16. That decision was about managing hormonal acne, though preventing pregnancy became an obvious benefit later on.

I stayed on the pill for a decade. No issues, no pain, but also no periods: when you’re on hormonal birth control, taking the week of sugar pills results in less of a “period” and more of a “withdrawal bleed”. When I came off the pill in 2012, at age 26, it took a full year for my period to return. That’s called post-pill amenorrhea and it led me down a research rabbit hole that eventually led me to my career today. During that year, I underwent blood tests and ultrasounds and received a PCOS diagnosis which I never felt was correct and was retracted by another doctor several years later.

I’ve written extensively about the genesis of my work in menstrual cycle awareness, and you can read more about those post-pill adventures here.

So, when did the pain start?

One thing about documenting my cycles privately and publicly for so many years is that there’s a lot of data to look back on!

Let’s use a timeline:

January 2014. My periods return after amenorrhea. Pain is so awful I throw up. The next few are similar. But then… it improves. I assume my hormones are balancing, especially with all of the cycle-syncing, nutrition, acupuncture and holistic health I am eagerly diving into.

2015 - 2016. Very occasional menstrual cramping, but not consistently and nothing beyond what paracetamol can relieve.

2017. My periods become heavier and at times exhausting. I know the power of resting at menstruation and when I can stop to bleed, it really helps. My bleed becomes visionary and ecstatic; when I do have pain, it is like a portal into these realms.

2018. Blood tests flag hypothyroidism and I assume this is why I’m experiencing on-and-off pain. I have a transvaginal ultrasound on my uterus and ovaries and everything looks fine. Again, rest is my go-to and it works.

2019 - 2021 Much the same. The pain/cramping comes and goes, with long stretches of time where I experience no pain at all, not even a flicker of discomfort. Some bleeds are deeply pleasurable, some take me into an altered state of bliss, while others arrive with pelvic stabbing that lasts anywhere from less than an hour on cycle day one, to a couple of days on-and-off. I get lower back aches a day or two before I bleed, and mostly use paracetamol, a hot water bottle, and a wearable TENS device to manage it. I start getting migraines at menstruation, but they only last for a few months.

I mostly stop eating gluten and drinking coffee for my thyroid health, upping the anti-inflammatory diet and low-impact exercise, and also start taking the medication levothyroxine, all of which seem to help the period pain too. I say things like, I know that when I have a period with pain or pre-menstrual breast tenderness, that there's an imbalance in my life and body I need to address.

I write poems about the bliss of bleeding and worship at the altar of the magic of the female body, even alongside the occasional cramping and feel that I am somehow in control of it — for so many months, there is no pain at all. I capture my blood and cast spells with it, anoint myself with it, I write a book about periods and in it I remind readers: a normal period has no severe pain.

In April 2021, I write this poem:

I have decided, that for all those years
my pain was the portal in.
without it, might I have known
the bliss, visions, peace
of bleeding?
Would I have stopped, without
body-contorting cramps
dazzling, nauseous migraines, and
bleeding so heavily I could scarce stand?
truthfully — I think not.
Today, without the tiniest trace of
discomfort in my womb
it is I who must
stop, rest
and slow down to the frequency of the
kaleidoscopic light rainbows
in my bubble bath.
Leaves sweetly rustling at my window
the cascade of warm blood
between my legs,
gentle like the softest piano.
I draw my blinds, prepare rose tea
and go back to bed.

2022 starts much the same way, with very little monthly pain, but as my marriage begins to show cracks in the summer, so too does my body. More digestive upset and bloating now. In the September after a particularly stressful month, I’m in bed for a couple of days, not just because I’m bleeding and resting and visioning, but because this time I can’t get out.

Quick interjection: At no point yet in this timeline did I consider that this cramping/pain could be endometriosis. I had mentioned the occasional pain to my GP, naturopaths, and Chinese Medicine practitioners, but in my mind (and assumedly theirs) it was always in the context of my thyroid, and always something that seemed to respond very well to holistic treatments and lifestyle changes.

And yet I would understand if you were wondering, as I’ve been wondering, painfully, for the past month… how did I not see it?!

Period pain is common, but it is not normal. This is true. I’ve said it a hundred times.

But I was living and working in a paradigm that often spiritualises pain to make meaning from it. My mentors spoke of pain as a teacher, a messenger, a sacred initiator and catalyst for whole bodies of work to come through. And I adopted this idea, that my pain must mean something; that it was trying to tell me something; that it had purpose and value.

Also, the pain was so inconsistent and rarely, up until this point, interfered with my daily life. Blood would flow easily and freely and I would assume (maybe correctly, maybe not), that it was because I was doing it “right” — I internalised the idea that if I was eating well, living cyclically, listening to my womb, practising what I teach… that my body simply wouldn’t hurt.

I believe — and teach my clients and students — that menstruation is feedback from the body, so when I bled pain-free, I celebrated. And when the pain hit, I queried: did I move my body enough last cycle? Eat too much gluten? Is it my relationship? Is my womb telling me it wants a baby?

That last one I held onto for a long time, that the pain was a sacred longing and monthly reminder from my womb that it was in deep desire of a child. Perhaps there is some truth to this. I still believe in a psycho-spiritual approach to menstruation and women’s health, but here’s the reality:

Despite all my listening, all the alignment, the diet, the herbs, the hormone-balancing, the castor oil packs, the blood tests, the rituals, the resting, the acupuncture, the cycle tracking, the blood sugar balancing, the 30g of protein at breakfast-ing, the intentional living… the endometriosis was spreading across my pelvis.

My body was speaking to me, yes, but it took me a long time to hear what it was actually saying: something is wrong, Claire. You need to see a Doctor.

Next time, I’ll share what happened once I finally did that. Spoiler: things had to get pretty gnarly first.

In the meantime, I would absolutely love to hear from you on this topic. Give me your stories, comments, reflections and questions. I welcome them with open arms.

Big love,

Ps. If this piece resonates or you know someone who might find it supportive — please feel free to share it.

Pps. Part two is now live and you can read it here.