On being diagnosed with endometriosis (part two)

What happened next. And a call to my fellow wellness practitioners.

Yesterday, I shared part one of my story in learning I have severe endometriosis — the diagnosis and early years of on-and-off painful periods. This is part two. Here, I’m writing about what led me to finally start thinking it could be endometriosis, how gnarly it got, the decision to have the surgery, and what happened next: the grief, the rage and the reckoning I’m making with both the medical and spiritual-wellness worlds. Thank you so much for reading.

This brings us to January 2023. I’m working with a holistic nutritionist, focusing on thyroid health and all of the lovely pre-conception inner reserve-building foods and supplements. We’re doing blood tests, pee tests, vaginal microbiome tests, the works. My recent DUTCH test shows a dominance of the 16-OH oestrogen pathway, the kind that is associated with cell growth and proliferation — the kind linked to endo. I get my period and for the first two days, there is no pain. I tag it in my tracker as a blissful bleed no pain.

And then on cycle day 3, it hits. There is a rectal pain like nothing I have experienced before. Where previously any cramping has been mostly uterine or lower back, this one is, and there is no other way to say this, as if there is a large knife stuck in my arse.

I tell my nutritionist. And for the first time in my life, a professional looks back at me and says, Claire, have you ever thought about endometriosis?

And I say: Hmmm, have I ever thought about endometriosis?

I mean, my sister has it. My friends Lisa and Holly have it, many of my clients have had it, but… I don’t think my pain is as bad as theirs seems to be? (Oh, the comparison of pain! The minimising! The inner gaslighting!)

But something lands, and in February 2023 I pay for a private ultrasound to rule out fibroids which comes back clear. I’m given the contacts of two specialists in London who I could get a referral to see, but it would be a two year waiting list on the NHS for non-urgent cases, and anywhere from £5000 upwards to have the surgery done privately. With the only definitive diagnostic tool being surgery, it’s not a priority — as in, it’s quite the jump to go from, maybe I have endo? to getting cut open under general anaesthetic.

My nutritionist asks me what having a diagnosis would mean for me, and at the time, I think: not much. I’d continue as is, resting and managing the symptoms like the fucking pain witch I have become, eating well, resting, nervous system care, self-massage, cycle syncing, emotional release exercises, etc. etc. etc.!

And so I do. But this time… the pain does not respond.

In fact, it gets worse. It’s March and I’m in Mexico and bleeding and my belly is so bloated, I take photos, because it’s never looked like this before.

Endo Belly. 1. The first "wtf is my belly doing?" shot in March 2023. 2. April 2025, one month before before surgery. 3. & 4. Days after surgery.

My digestion gets really weird and I tell friends it’s like there’s just not enough room in my abdomen for all of my organs. I write: my hormones feel fine, this is… structural. Ovulation starts to hurt, but the pain isn’t in my ovaries, it’s in my hips. I journal that maybe it’s endo but maybe it’s sciatica?

Wee-ing in the days after period becomes painful, poo-ing on my period becomes painful, and then one day towards the end of 2023 I find myself on my toilet unable to get off it; I can’t breathe, I can barely make a sound to call my husband for help. It is in my sternum, it is in my thighs, and friends I am not speaking poetically: the pain stretches from my knees to my chest, tearing me in my half at my navel as I gasp for air.

And I think to myself: this is my body telling me I need to leave my marriage.

Like, sure. That much was true. I did need to leave my marriage! But I can’t help but look back and think, oh honey. Because I really thought/hoped that leaving would end the pain, you know? And so did other dear well-meaning people in my life. That is some people’s story with pain. But it wasn’t mine.

January 2024. While visiting Australia post-separation, I see my GP and finally centre the pain. She refers me to a specialist and within two weeks I see him — he does another ultrasound and tells me it’s likely endometriosis, but of course only a laparoscopy can confirm it definitively. The surgery would be free on Medicare and available within six weeks! Compared to my U.K. options, it feels like a miracle.

I schedule the laparoscopy for May, thinking even with a return flight, it’ll be faster and cheaper than doing it in England. But as the date approaches, my symptoms ease once more. I have a few pain-free bleeds. The idea of flying home for surgery starts to feel… tiring. So I postpone. I’m living in Oxford now and I get a private quote for the procedure there just in case — it’s £9,990 upfront. I decline.

2024 sees the cramping continue to oscillate, though thankfully even when I do have cramps they never reach the 10/10 levels of pain I had experienced the year before. The rectal pain vanishes completely. I find using a massage gun on my thighs to be almost instant relief from any pelvic discomfort.

But what begins to remain consistent is the bloating, or what is commonly referred to as “endo belly”. Where previously the days after my period would see my belly flatten out, now my belly expands from cycle days 4 or 5 onwards, and I look a few months pregnant until after ovulation.

September 2024. I go to Guatemala and spend a week training in Mayan abdominal massage, and there is so much grief in my body. One of the teachers places her hands on my belly and says, there is something here that should not be here. Another says, this feels like the womb of a woman who cannot have children. I’m annoyed by this unsolicited feedback from these elders, but something in it rings true.

December 2024. Excitedly, my partner and I start having baby making sex and calling in the next member of our family! I’m scared and excited that it might happen right away or not happen at all. We don’t get pregnant.

February 2025. Back in Australia, I see my OBGYN again and get a new surgery date for May. I tell a few people about my decision and I’m met with support as well a few well-intentioned, Oh, let me just introduce you to my naturopath first and Why don’t you wait another year and see how things go? and Hmmm have you ever tried castor oil packs?

And so, this brings me to today.

I went into surgery asking for what I needed: relief from pain that had, at times, been disabling; clarity about what was happening in my body; and support for my fertility.

But with no endo removed, there has been no pain relief. That was such a gut-punch to process: physically and psychologically recovering from the surgery knowing that nothing had changed. My last bleed was, in a word, brutal.

But for the first time ever I did not wonder what I had done “wrong”. I didn’t try to analyse or de-code the cosmic messages from my womb. I have severe endometriosis and that diagnosis in itself is a relief.

I know a diagnosis is not an end point. Of course I will continue to support my body with food, movement, supplements, managing stress, rest, acupuncture, abdominal massage, practicing cycle awareness, etc. We know these things help. They really, really help.

But they did not stop the endometriosis from growing and they likely won’t stop it from spreading either. Maybe they’ll slow it down? Maybe they already have been? Hopefully. But who knows. The painful truth is that no one can tell me why it’s in my pelvis or how to cure it.

No one knows! Medicine does not know and the wellness world does not know.

And it’s because of this lack of understanding of endometriosis/the female body that so much harmful messaging has taken hold, especially in the spiritual and wellness spaces. Because alongside all of the well-meaning “advice” I’ve received, I’ve encountered darker ideas too:

That endometriosis is a manifestation of a woman’s rejection of the Feminine.
That it comes from hating other women.
That it’s incurable only because we over-identify with the diagnosis.
That doctors are useless, so there’s no point seeing one.
That practicing menstrual cycle awareness is enough to remedy it.
That resting is enough to remedy it.
That female pain is a gift. A spiritual lesson. Something to be “sat with.”
The greater the pain, the greater the power.

Reader, I am angry.

Angry at the fact it takes so long to be diagnosed because the limited diagnostic tools available are invasive, expensive and slow. Angry at the messaging I have received, and sometimes perpetuated, that female pain must mean something spiritual, something deeper.

These factors combined are what caused me to hesitate in having the surgery in the U.K. earlier. Understandable, yes, but I can’t help but wonder how things might be different had I pursued this path sooner. On that note, I am so grateful for Australia’s healthcare system, the gift of Medicare, and how quickly my GP handled my concerns.

And I am heartbroken at the decisions I now face. Astounded that medicine can now offer me only major surgery and hormones that mimic menopause, while wellness offers me rest, castor oil packs and magical thinking. And look, I love a castor oil pack, don’t get me wrong — they’re great. But they’re not really a solution imo. And to be fair, neither is surgery necessarily! Endometriosis can be excised… and then it can return.

I am frustrated! Mostly at the part of myself that really believed I had it under control, that because I was managing my symptoms, because they weren’t constant or severe (mostly), that everything internally was okay. I have compassion for that part of myself, of course I do, but it is humbling.

My gosh it is humbling. Regardless of everything I think I know, I am a human, and as vital as it is to take care of ourselves, even the healthiest bodies are not immune to disease and decay. Bleak as this may sound, I mean it when I say I am finding such relief and surrender in this space, in this admission of not-knowing.

And for now, that’s where me and my beloved, my sacred, my particularly messy pelvis will be.

A month post-surgery. Amazed at my own resilience, tbh. Wishing it wasn’t this way but proud of myself and more committed to this menstrual cycle awareness work than ever before.

To my fellow holistic health practitioners: Pay attention when your client tells you they’re in pain/discomfort. Believe them. Encourage them to see their GP. Support them in advocating for themselves.

Know that endometriosis symptoms can be hard to pin down. They often fluctuate and overlap with other conditions, as in my case with my thyroid. The level of pelvic pain is also not a good indicator of the extent of the disease. Some women have very little endometriosis that causes severe pain, while others with more extensive endo can have very little or no pain/symptoms at all.

But the most common symptoms include:

• Pelvic pain — especially before, during or after menstruation and/or ovulation

• Pain during or after intercourse

• Lower back or sacral pain with periods

• Digestive issues such as constipation, loose stools and bloating

• Pain with bowel movements or urination — particularly around menstruation or ovulation

• Heavy bleeding

• Fatigue and/or nausea

• Fertility challenges

That said, I’ve never had heavy bleeding, nausea or pain during sex, and the rest were inconsistent, so it absolutely does not look the same for everyone.

And practitioners, we know medicine has its failings — lack of research into the female body being number one! — but we’re delusional if we think we don’t have our own blind spots, too. If we truly want a holistic approach to health, that sometimes means surgery and medication as well.

I’m so sick of hearing from women who feel shame for pursuing that kind of medical support, whether it’s for chronic pain, mental health, neurodivergence or otherwise. Or women and people with periods who feel like they’re doing wellness or spirituality or menstrual cycle awareness wrong, because their cycles are not completely symptom-free.

It’s time we support women to stop blaming themselves! It breaks my heart how many quietly carry the belief that their pain is a punishment, that they’ve somehow brought it on themselves by missing a sign or not tuning in enough.

And let me be clear: it’s easy and often trendy for folks outside the wellness world to criticise and minimise how powerful lifestyle changes can be. That’s not what this is. It’s because I believe so deeply in the power of holistic health that I’m making these critiques. We need to know the limitations/parameters of our work just as much as we know the power it offers.

If you see yourself in these symptoms: You’re not alone! And I’m here if you want to share.

• Endometriosis UK symptom checker

• Pelvic Pain Foundation of Australia

• This is a dietitian’s take on how anti-inflammatory eating can help with endo symptoms, which will continue as my first line of defence right now.

Here’s a short script you can take to your GP:

I’ve been experiencing ongoing [pelvic pain / heavy periods / bowel issues / fatigue / pain with sex / insert symptoms here], and it’s affecting my quality of life. I’m concerned that this might be endometriosis and I’d like to discuss what investigation or treatment options are available, including referral to a gynaecologist. I’m open to both medical and lifestyle approaches but I don’t want to delay care any further.

As always, your comments are invited. Thanks so much for reading.

Big love,