My eyes flitter open, and drift shut. Voices and words move near me, running interference on the beeps and boops surrounding my body. They are saying things to me but I am too deep down the rabbit hole of anaesthesia to respond.
“Lisa … how are you, my dear?” One voice seems to have fallen down the hole with me. It is kind and warm. How curious.
“I think she’s talking to you,” a creature in my head whispers, “you need to climb out.” I open my eyes and attach the kind and warm voice to the blurry vision of a woman, a nurse.
A different voice sounds now, this one deeper and colder. “How’re you doing, Lisa?” And like that first rush on a rollercoaster, I am bolted into consciousness and met with a severe, punishing pain stretched across my belly and pelvis. Who parked a bus on my body?
RM Block
“I’m in a lot of pain, it really hurts,” I whimper, embarrassed to sound so weak, my throat raw from intubation. A man in blue scrubs responds in a Georgia drawl: “You just had surgery. It’s going to hurt.” He’s the anaesthesiologist I met briefly before I went under. He’d run his checks and administered one of those warm, fuzzy drugs to relax me before holding my life in his hands in the operating room I’ve just come from. I will be charged handsomely for his services.
[ Endometriosis in Ireland: What is it, and how is it treated?Opens in new window ]
In the US, where I’m currently lying, beeping and booping, there are two specialities that bill separately from a hospital surgery: anaesthesia and pathology. The former sometimes charge by the minute in the operating room. “Oh don’t worry, honey, we’ll round it down if it goes over the hour,” an administrator had explained on the phone when I’d called to inquire about billing. When I rang the pathology department, I was told it would be $176 for testing one evicted ovary, or $305 for the two. That’s a bargain, right?
“We’re going to see about making you more comfortable,” the anaesthesiologist says, but I slip back down the rabbit hole, seeking the comfort of unconsciousness.
I come to in a different room. It has a window and I’m relieved to see natural light. A young nurse sets up a morphine pump on a tall metal frame beside my bed. I am in a hospital in Atlanta, thousands of kilometres from home in Dublin. It is my second time in this hospital in two years. On my first visit, I left minus my uterus, cervix, Fallopian tubes and a whole heap of endometriosis. A disease so horrible and painful, it has upended my life. This time, I am discarding my ovaries and whatever flesh they’re stuck to.
Lying in this hospital bed, catatonic with drugs and pain, I am now empty of the internal organs that make me female. My world has got smaller and smaller over the last four years as the pain has intensified, and now in this hospital room in Atlanta, my world is just me, my machines, and Elizabeth.
Elizabeth is my dear friend from Texas, who I met in New York when we both lived there. She has flown to be with me for the surgery. This is the second time she has done this: dropped everything and flown to take care of her Irish friend. Elizabeth is a nurse practitioner, and when I told her in 2021 that I was going alone to the US for endometriosis excision surgery and a hysterectomy for adenomyosis (the evil twin disease of endo), her response was: “No, M’am, not on my watch.”
This whole fiasco started in October 2019 with a period so heavy, I turned a hotel bathroom into an abattoir. They’d been heavy since my first, at age 14, and painful. But this one was bad. So bad, I decided to go to the doctor. I was told it was stress, that there was nothing wrong.
I have been told these two sentences so many times in my life, particularly the latter, I have lost count. That visit to the doctor was a different version of the same experience I have repeated over the course of my lifetime. Something feels wrong, something is wrong, I go to the doctor, and no cause is found. I get sent home believing the thing that is wrong is, in fact, me. And that I shouldn’t believe my own intuition. I doubt myself, think I’m broken, and move on, until the next experience occurs. Rinse and repeat.
[ Endometriosis in Ireland: What is it, and how is it treated?Opens in new window ]
In my teens, my periods were so heavy I routinely bled through clothes. I was perpetually anaemic, my iron levels chronically low. When I played my beloved basketball, I had to wear two or three pairs of underwear with multiple pads, cycling shorts, and thank the heavens my gear was black. At 18 I developed knee pain so bad in both legs my father coined them the Million Pound Knees because they cost him so much in medical bills. It effectively ended my basketball playing and I was told I would never run again. Did you know leg pain is a common symptom of endometriosis? I didn’t.
This continued into my 20s, 30s and early 40s. There were other symptoms, like “flooding”, which is exactly what it sounds like. You stand, and gush blood. I ruined more clothes, car seats and upholstery than I care to remember. At gigs, in pubs, in clubs, the whole body pain from standing would get so bad, I’d drink heavily to numb it. Alcohol is probably the worst thing you can give endometriosis, due to its inflammatory nature. The day after, my hangovers were so severe, and the pain in my legs so bad, I sometimes found it difficult to walk. I laughed it off with my friends. I was just a weakling who couldn’t hack the pace.
In my early 20s, I developed a mystery hip pain that exists to this day. In my mid-30s, when I lived in New York, I spent two years in physio, sometimes going twice, three times a week, trying to manage it. I had fancy scans and saw expensive doctors. At no point did anyone I saw consider it might not be a musculoskeletal issue. It affected my ability to sleep, sit, stand, work, exercise, and despite all the treatment and surgeries I had, I still didn’t know what the pain was. It was with me every single day.
“It’s stress. There’s nothing wrong.” I repeat the doctor’s words in my head the month after the hotel abattoir incident. But this time, there’s dizziness and I have to lie down for days. I see another doctor and I’m sent for an ultrasound. I am in the toilet roll aisle of a big Dunnes when I get a call to tell me I have something I’ve never heard of called adenomyosis. I fumble in my bag for a pen. “It often means you also have endometriosis,” the doctor says to me, my head pressing the phone to my shoulder as I misspell the word on my hand. “I’m going to refer you to a consultant.”
Endometriosis is as common as diabetes and asthma, yet in Ireland it takes eight to 10 years on average to get diagnosed. It took me 28 years. With symptoms as wide ranging as leg and back pain, shoulder pain, fertility issues, painful bowel issues, headaches, brain fog, chronic fatigue, shortness of breath – and there’s more – the NHS has ranked it in the top 20 most painful conditions. It’s woefully under-researched, despite the fact that the disease affects one in 10 women and people assigned female at birth, according to the World Health Organisation. Within the patient community, it is widely believed to be even more common than that – we know too many women who are either fighting for a diagnosis, or who describe the symptoms and don’t yet know they have it. I once became friends with a gynaecological surgeon doing a fellowship in Ireland who told me they were seeing so many endo cases, her estimate was one in three.
When I’m cc’d on a letter that includes the sentence, ‘She thinks she’s in constant pain,’ I realise I’m in trouble
— Lisa Tierney-Keogh
Endo-metri-osis. The word bangs around my brain. I start researching and read through the symptoms. Puzzle pieces click into place as my chest tightens. “I have endometriosis,” I think to myself, silently, daring not to speak it out loud. With all the health problems I’ve endured since childhood, I’ve been branded a hypochondriac so many times, been gaslit into believing what was wrong was me, that my body was fine, but I, Lisa, was the problem.
February 2020 rolls in with news of a strange new virus in China trickling into Western media. I’m at my first appointment with the consultant I’ve been referred to. I’m told I’ll a need diagnostic laparoscopic surgery to confirm the presence of endometriosis, and whatever is found will be removed. Was this a solution to 28 years of pain?
The system, and I use that word very lightly, for diagnosing, managing, and treating endometriosis in Ireland is in its infancy, despite the prevalence of the disease. There are long waiting lists for the few gynaecological surgeons that treat it, who are themselves overstretched by the necessity to also treat general gynae patients. Lack of operating-room time severely limits the capacity of these surgeons even further.
There are currently two supra-regional endometriosis centres at Tallaght University Hospital and Cork University Maternity Hospital (CUMH), supported by five regional endometriosis hubs, but figures reported in June show that half of the staff posts in these clinics remain unfilled.
The Enhanced Endometriosis Centre at the Coombe states on its website “we only accept women with a definitive diagnosis of endometriosis”. But the only way to get a definitive diagnosis is through surgery – a diagnostic laparoscopy – with an endometriosis specialist. It’s a vicious catch-22 circle created by a Department of Health forcing physicians to work with impossible wait times and limited resources. Despite a Women’s Health Action Plan, and an increase in funding for women’s health, there remains a giant, gaping chasm into which many women are falling. If women’s health was a priority for the Irish Government, they would make it their business to staff the many unfilled positions of the very few endometriosis clinics there are in a State that continues repeatedly to fail women.
I show up at a Dublin hospital on a Monday, unsure if my surgery will go ahead with all the talk of something called a shutdown. I’m brought to an operating theatre and when I wake in the recovery room, the surgeon claims “one spot of endometriosis” has been found and burned off. My procedure is declared a success and I am sent home. But you know when you see an ant, and there’s never just one? Endo is like that.
After this surgery, the s**t hits the fan in every possible way.
My pain increases. Sensationally. As the pandemic rages on, so too do all of my symptoms and now I can’t walk for more than 15 minutes. I can’t sit and I can barely sleep with the pain. I become a shell of myself. I cry all the damn time because my body hurts so much. Nobody can understand it, how I can be this bad despite my surgery and all the doctors I’m seeing. I see that word floating in the air again: hypochondriac. I see it in the eyes of loved ones who don’t understand the extent of how bad women’s healthcare in Ireland is.
I develop a lovely new doubling over kind of pain. A mixture of feeling like I’m in early stage labour while being stabbed with a hot poker. I call the surgeon to describe the pain, giving all the descriptors: sharp, burning, dull, aching. I’m told to see my pain consultant. They are growing increasingly frustrated with me and when I’m cc’d on a letter that includes the sentence, “she thinks she’s in constant pain”, I realise I’m in trouble.
I call the office, begging for ideas, but the surgeon tells me bluntly I should see a gynaecological oncologist. “But ... I don’t have cancer,” I say, in disbelief. “Well it would be good enough,” comes the retort. Months later, I’m at yet another appointment, crying, when I hear “there’s no reason for you to be in this much pain”. An alarm bell goes off in my head, and I realise I’m not going to get the care I need in Ireland. So I start to look abroad for answers, and that’s when I learn about all the other women who are leaving the country for surgery. So many of them, tired of waiting and waiting, of being told their case is too complex, of living in pain with no help or cavalry on the horizon.
In June 2021, after an extraordinary battle with the Department of Health and their Covid travel restrictions, against the wishes of my family and friends, I travel alone to Atlanta, Georgia for surgery. After decades of not being believed, I place trust in my intuition, and follow my gut.
It turns out to be a good call. Not only does my US surgeon discover more than one spot of endometriosis, he finds lots of it, in all kinds of places. He detaches my bowel from my uterus, which had glued together. He removes adhesions, lesions, my appendix, cervix, Fallopian tubes, and uterus. Elizabeth minds me in those first few days after my surgery, feeds me, makes me drink, forces me to walk, wipes my tears, and even insists on monitoring my bowels. “Imagine a plate of spaghetti,” she says in her gorgeous Texas accent, “and pushing it from one side of the plate to the other ... that’s what just happened to your guts, girl.”
Living with Endometriosis
On day 10 post-op, I fly home from Atlanta to Dublin by myself, unable to walk more than a few steps. There is nobody who can or will bring me home. So I do it alone. It is a harrowing, horrible journey.
I get support when I’m home. I try my best to take it easy, but I’ve lost so much of my life at this point, I desperately want it back. Months go by and people tell me I look better every time I see them. I was told it would take six months to recover, but the women who know say it will be a year. At least. So I don’t know that the pains that have started aren’t a normal part of the healing. Sharp, stabbing pains for days, followed by an excruciating feeling of eruption and then crippling exhaustion. My ovaries are growing and popping large cysts but it takes another two years of this madness before any doctor in Ireland will concede that maybe yes, maybe there’s something else going on.
One particularly wild, cyst-popping day, I am sent to the emergency department of a Dublin hospital to rule out a stomach explosion or some such emergency. A doctor prods at my belly. “It’s an ovarian cyst,” I say. I am ignored. “All I need is an ultrasound,” I say. I am ignored. I wait 10 hours for pain relief and receive it only after an ultrasound confirms what I’ve been saying. Because as a woman, you need proof, receipts. You need evidence of your own suffering. Your word, your intuition that something is wrong is not enough.
As I lie in the ED cubicle that day, staring at the ceiling light, I think of my daughter at home, and about how I am going to explain my absence. I have shielded her from as much of my illness as I can but it’s taking its toll. This latest hospital visit needs an explanation. “What if I name my ovaries?” I think. “Something unusual that’ll make her smile.” It comes to me in a flash. Enid and Eunice. Every time a cyst pops, and I am sick or in pain, I’ll tell my daughter that Enid and Eunice are acting the maggot again. And she’ll smile. I take tiny mercies where I can get them.
In September 2023, the pain is so bad I can’t physically take it any more. Something is wrong in my body. I know it in my aching bones. I briefly consider surgery in Ireland, given how arduous the journey home from the US had been after my last. But when I am told I’ll need a stoma for six months post-op, I stop dead in my tracks. Essentially, this is an admission that my bowel will be injured in an operation to remove my ovaries. I contact my surgeon in the US to get his opinion. It is Friday night. He writes back, immediately, all caps: DO NOT DO THIS. NO NEED FOR STOMA. PLEASE.
Three weeks later, I am on board another flight to Atlanta. Elizabeth, unwilling to miss Part Deux, again drops everything to come and be with me at short notice. As we sit in the pre-op cubicle together, she laughs as I try to convince the staff to let me have my ovaries as a keepsake. We make each other giggle to hide the nerves and anxiety building in both of us. My ovaries have been increasingly active for a long time. In plain terms: they are growing things so much, something bad, very bad, might have grown. But we don’t talk about it. I don’t manage to persuade the hospital staff to let me bring my ovaries home, and as I’m wheeled me away from Elizabeth, she holds my hand until our fingertips leave each other.
It is from this surgery that I must climb out of the rabbit hole. It is this surgery that reveals my right ovary had glued stuck to my pelvic wall like a barnacle on a rock, preventing surrounding tissue from moving. It is this surgery that shows my left ovary adhered to a nerve, causing sharp pain every time I step. It is this surgery that puts me in menopause and the $305 pathology deal reports that nothing sinister has grown.
Elizabeth watches me like a hawk. She doesn’t like the settings of the aggressively beeping machine monitoring my heart rate and blood pressure, unhappy with how far it will let me go before a nurse is alerted. She changes them and positions her chair to watch me and the numbers on the machine more closely. My blood pressure and heart rate go down. A lot. The morphine feeding my blood pain relief puts me into respiratory depression but I don’t know this till later, when Elizabeth can bring herself to tell me.
The room is quiet when I wake during a shift change. A nurse I haven’t met checks my vitals. I introduce myself, and thank her for taking care of me. “You’re welcome,” she smiles. I can’t see her nametag and ask for her name. “I’m Enid,” she replies. I look over to Elizabeth, who sits up in disbelief. I tell Enid the story of my badly behaved ovaries, and how I’d named them to help my daughter navigate her mother’s ailing body. Enid is quiet for a moment and I feel embarrassed for telling her. Then, she looks at me, and tells me that her mother’s name is Eunice.
Recovery from this surgery is a different beast. Harder. Much harder. And lonelier. I lose my sense of self. I lose my sense of belonging in my group of friends, and in my family. There’s a strong feeling in the air that if I’ve had this many surgeries, and seen that many doctors, surely I must be better by now. The invisibility of the ravages of endometriosis and surgical menopause rage on inside my body. But on the outside, I look fine. Therefore, I must be fine. But I am not. People drop out of my life. I didn’t choose this body, but others can choose not to be around it. And they do. In sudden onset menopause, after years of “health stuff”, I navigate total bodily change, memory loss, cognition change, hormonal upheaval, mostly by myself. And I get it. It’s sad, and I get it.
It’s not linear, but healing is happening. Slowly. Surely. There are bumps. There will always be bumps. Like a recent diagnosis of Ehlers Danos Syndrome, a connective tissue disorder, which, again, explains lifelong issues and symptoms, including some of my pain. It turns out I’m not a clumsy hypochondriac, I have a condition that means my joints aren’t always stable enough to hold themselves together, and the ligaments, tendons and muscles in my body have a tendency to dislocate, strain, or just hurt like hell.
The upshot of all of this is a deep, tragic wisdom about the fragility of health. A knowing in your bones that happiness is in the small details of life: blooming daffs in spring, the smell of salty sea air on a summer day, leaves turning colours not seen before, the first crunchy frost of winter. Every season that passes is one you made it through. Maybe it was easy, maybe this one was harder, but damn it, you’re still here.
In March 2025, I succumb and add testosterone to my HRT regime. Within weeks, a spark is lit within me. My memory improves, my cognition changes, and I feel a new version of myself take hold. I grab the spark, find a match, and set it on fire.
It’s taken (and continues to take) a plethora of things to get me through these past five years. Pharmaceuticals, physio, surgeries, nerve blocks, procedures, injections, blood tests, Pilates, acupuncture, manicures, therapy, dog walks, blow-drys, reality TV, podcasts, supplements, healers, meditation. It has taken my lifetime of living in this body to learn to lean into the particles of hope floating in the air around me. To listen to whispers from magical places, like hearing the name of a nurse is Enid, and her mother’s Eunice.
When dark times visit us, we have to lean into that knowing part inside us, our gut, our source, that tells us something is wrong. We have to believe ourselves, even when no one else does. And we must never, ever give up on finding the people who will listen to your story, look back into your eyes, and tell you, “I believe you”.
