Diagnosed with Fibroids: My story and learnings
2020 was quite a year, eh? The final months unravelled like a booby-trapped Matryoshka doll for me. Every day revealed an unexpected aspect of reproductive health. The emotional and physical impact of fibroids felt like falling asleep, slow at first, then all at once. As if my body became hijacked over night.
I’m sharing my rearview mirror, my hindsight, to raise awareness on a topic I wish more people talked about. Reproductive health.
Over the years I’ve found women’s reproductive health to be such a vague topic. It has a palpable unease, a stigma. And yet, fibroids have been the gynaecological disease with the largest burden during the pandemic. It effects up to 80% of women during their lifetime, but the current treatments and research under serves the population effected for such a common condition.
Now, I’m doing my best to learn more about it. To contribute to the conversation. My knowledge prior to my fibroids diagnosis was very limited. I’d never even heard of them.
Here’s my story. Here are my learnings.
Diagnosis
As the sun set in November, I got an unwanted wake up call from the left side of my abdomen. Stabs of alarming pain radiating out like a sundial. I’d intermittently felt a similar sensation in New Zealand visiting family. Now in Lisbon, with my boyfriend, the pain had evolved into an almost tolerable 5 out of 10.
I chalked this painful encore act up to exercise. A wee strain. “That side always flared up”, I inwardly murmured. “She’ll be alright”. A Kiwi expression meaning whatever is wrong will right itself with time.
By the time Monday arrived, I could clutch the outline of an egg-sized mass protruding out of my abdomen. I couldn’t sit at my chair for work. I could not even bend down. A lego figure had more range of movement than me. And the pain, a 7 out of 10. This was definitely more than a wee strain.
The first doctor I saw insisted I was pregnant. 4 months. My uterus was huge. He kept asking me over and over again with metronomic repetition if I had been throwing up, or if my clothes were fitting tighter than normal.
And every time I would reply — “no, the timeline doesn’t match up”, “but, I am still having periods”, “no, I am not experiencing nausea or weight gain”. Sharing knowledge of my own body, my lived experiences, turned into a tennis match with the patriarchy. It was as if no other diagnosis could exist.
The pain however we agreed was not in an ideal place. Could be a sign of miscarriage, and potentially life-threatening. “Get to the hospital quickly for a scan,” he said.
6 anxious hours later. Between a succession of doctors, 1 pregnancy test, and an ultrasound, my first one — I received my fibroids diagnosis.
The ultrasound revealed a fruit basket of benign tumours in my uterus. Six in total. One orange, two lemons, two strawberries and one cherry sized fibroid.
They were nestled in the front and back of my uterus’ wall. Causing the stabbing pain and uterine enlargement. I didn’t need a medical degree to understand my case was severe for someone my age.
Fibroids could range from a tiny pea to a gigantic watermelon, with unpredictable growth patterns. The record holder for a surgically removed fibroid is 28kg. But, whatever their size they are hard AF. They have the density of a golf ball. Astoundingly, nobody knows what causes them yet.
As the dimensions were rattled off in a windowless room, I felt the sting of bad luck weighing heavily. I’d visited the gynaecologist not so long ago in New Zealand. A routine check usually picks them up, and yet they had remained silent unwanted houseguests.
As I shifted uncomfortably around the cold plastic of the hospital chair, I could feel my orange sized golf ball pressing against the elastic of my skirt. An unnerving scene from Alien played in my head. Oh, f*ck.
Symptoms, unmet needs and weighing up treatment options
Nabokov once metaphorically described the transition from one language to another as the slow journey at night. Moving from one village to another with only a candle for illumination. This describes my journey with fibroids, too. Between diagnosis and treatment, I was stumbling in the dark for medical advice and options.
This all would have been daunting under normal circumstances. But being in a foreign country, different medical system, away from my support network, no health insurance, and in a pandemic. Well, it felt pretty darn stressful to navigate alongside new symptoms.
Symptoms that baked themselves into almost every aspect of my life
- painful abdominal contractions when eating/reduced appetite
- constipation and frequent need to use the bathroom
- unshakable pins and needles from fibroids pinching nerves
- ongoing psychological distress
- distended abdomen
- pain during intercourse
- low range of movement without discomfort/pain
FKA twigs shared “the thing that people don’t understand with fibroids is that it can just make all of your body mechanics mess up so badly.” For me, this manifested most notably in the pressure on my ribcage.
These fruit-sized gatecrashers invaded the space neighbouring organs occupied. Inching across enemy lines surreptitiously and without remorse. It hurt to breathe sometimes. I’d often cry gasping for air.
The final blow was my elevated liver enzymes. In my pre-op blood test, my liver was suddenly the level of a chronic alcoholic. We couldn’t trouble shoot why with the doctor.
This meant no pain killer except for emergencies the last month before treatment. Being able to take a shower felt like winning the lottery. My body felt like it didn’t belong to me, it felt out of control. I needed to get to grips with possible treatment options that aligned with my goals.
My goals were two fold, to preserve my uterus and fertility. Through the traditional gynaecological route, they could only offer an open myomectomy, the surgical removal of fibroids from the uterus. My fibroids were too big and numerous to do anything minimally invasive. As such, I proceeded to prepare for this surgery.
Three doctors had advised this ‘gold standard’ approach which included doing a C-section to conservatively remove 5 out of 6 fibroids, then reconstructing my uterus with a 6–8 weeks recovery time. But it unfolded after a few consults that I was a very poor surgical candidate.
Two of my fibroids were so big haemorrhage was likely. And even with this conservative approach, having enough uterus left to reconstruct afterwards would be challenging.
It eroded confidence in one of my primary goals. Children had been an afterthought most of my life, but a desired option to keep open. Now facing the prospect of being suddenly stripped of it. I felt like a torch whose batteries were running out, with no spares in the cupboard. It made me sad. It made me saccharine.
The doctor wouldn’t know until after they had opened me up which way it would go. But, hysterectomy was a likely outcome.
Hysterectomies, or the removal of the uterus, make pregnancy impossible and can also lead to other nasty side effects like blood clots, infection, pre-mature menopause and damage to surrounding areas, like the bladder and nerves. Some studies have even linked hysterectomies to an increased risk of depression.
It felt like playing Russian Roulette with my organs, maybe you’ll keep them, maybe you won’t. It was disheartening that all the gynaecologists offered no alternatives in the face of such odds. For months I felt deflated, but I was not giving up.
Last chance saloon
Untangling the next steps was the next challenge. In the background I’d been doing a hella lot of research. Life had become a maze, when I thought I found a way forward, I’d hit another big wall.
I’d been in two minds seeing an Interventional Radiologist (different to normal Radiologists) because there was a lot of controversy surrounding the procedure they offered. It’s called Uterine Fibroid Embolisation or UFE. It shrinks the tumour over time by cutting its blood supply using tiny particles to block the nutrient highway feeding them.
Convoluting this debate, were papers like these—
Depending on what you typed into Google there’s a dearth of papers to live in your own echo chamber by, and not enough funding and research done on UFE in the long term, to give it enough confidence in the Gynaecological community. While it is outside their domain and skillset, I was left with the impression that UFE’s low awareness as a treatment was as much political as it was misunderstood.
Gynaecologists might say “you’re cutting off blood supply” this isn’t optimum for future fertility. Your uterus will never be the same again.
Interventional Radiologists could reply “the uterus has back up arteries, but it [your uterus] won’t be as pliable.”
The reality was my uterus was never going to be the same again whether I had major surgery (open myomectomy to cut them out) or minimally invasive (UFE to shrink them). Fibroids had hijacked my uterus, they’d hijacked my life. It wasn’t until I read this paper that I felt a scintilla of hope. The team doing the largest study on UFE were based in Lisbon.
My first meeting with one of the Interventional Radiologists from this team was reassuring. I instantly liked how much information this doctor freely offered, and how enthusiastically he answered all my questions. He’d even visited New Zealand for his honeymoon which somehow felt like karmic brownie points.
He was even cautiously optimistic as the interior of my uterus looked healthy which is not often the case in multiple fibroids. Mine were all pushing outward. It explained why I experienced pressure and pain symptoms so severely. Not one of the three gynaecologists had observed or explained this.
We also used a questionnaire to understand the severity of my symptoms and their impact on my quality of life.
For myself, the decision was made simpler once I had assessed all my options. As a poor myomectomy candidate, this procedure meant I could keep all my organs, and a vague chance of keeping fertility options open. So I changed domain expertise. From Gynaecology to Interventional Radiology to meet my informational and therapeutic needs. Even if it meant rolling a hard six in terms of having children or not.
On the 26th of February, 2021 — I sent an eviction notice to my fibroids. I had the UFE procedure to cut off their blood supply. I’m still recovering as I write this, but as they say, turn those lemons into lemonade.
So here are my learnings to help you navigate your own fibroid journey.
Tactical learnings
- Ask these questions in your initial consult. I’ve prepared this google doc with a list of questions complied from different sources. Copy and paste to a text app on your phone. It’s hard to think of the right questions to ask when you haven’t been in this situation before. (Credit and thank you to Fibroid Foundation and WeWearWhite)
- Do you own research on the treatments. There is no one size fits all approach to fibroids. Ask your healthcare provider questions like: Can I have the new GnRH medication (elegolix, relugolix, linzagolix)? How about the Accessa treatment? Why am I a good/bad candidate for surgery? A collaborative physician should be able to answer them constructively and educate you on all options. Even refer you to a specialist that’s outside of their domain if they offer a more suitable treatment. Good doctors won’t feel threatened.
- Mine recovery insights from online communities, Instagram and Youtube videos. If you are going for a surgical procedure looks up things like ‘Myomectomy recovery story’. There are some things your doctor will share, but there’s more helpful patient-led knowledge that you won’t get in a consult. For instance, I’d never have considered purchasing a Postpartum stomach wrap for my open Myomectomy until reading about it on a blog. Helpful hashtags to follow are #askher, #shareyourstory and #wewearwhite to sift through patient stories. There’s a whole community to learn from out there.
- Blood tests and anemia. Ask the clinician taking blood to use the smallest vial possible. They’ll be understanding. Women with fibroids usually have a spate of blood tests to do, and are often anaemic. Fibroids can protrude into the uterine cavity distorting the interior. More distortion means more surface area and overall blood lost during a period. Tranexamic acid is also a good option to discuss if your energy levels are unmanageably low.
- Take a fibroid-specific quiz. Your quality of life is important. UFS-QOL is the only ‘disease specific quality of life questionnaire’ for women in existence, and you can take it online. It’s a red flag if this tool isn’t used in any of your consults. Women often adapt before realising how substantial and disruptive their symptoms are. It’s good to mentally check in with yourself. Can you comfortably leave the house for social outings? What’s your energy like? What has changed in your lifestyle and activities recently? Can you function at the level you would like to?
Behavioural learnings
- Advocate for your health. I saw 4 doctors across 3 hospitals before feeling confident and comfortable in their approach to treatment, care and knowledge. I know it’s a lot of hassle. Paperwork. Time. Needles and emotional labour. But challenge your health care provider to really collaborate on your fibroid journey and goals.
- It’s not all in our heads. A lot of women report doctors dismissing or downplaying their pain from fibroids. I experienced this too. During a consult, I felt the beginning of a UTI (urinary tract infection). I shared this with my second Gynaecologist. He showed the results of my urine test. 100% clear of infection. “It’s all in your head. You’re experiencing psychosomatic symptoms” he said. My emergency MRI shortly showed the largest fibroid weighing down like an anvil on my bladder. The pain was not all in my head, and I did not see him again. Don’t let anyone undermine your experience.
- Build your go-to crew. In your personal life, and if its psychologically safe to do so, at work as well. Navigating symptomatic fibroids is hard. Physically it’s a dynamic disease with unpredictable growth and symptoms. It can take heavy toll on many fronts. Have people you can talk openly about it.
- Develop a bias to action. Don’t put off treatment. A lot of women are barely functioning because their haemoglobin is so low. They’re losing the equivalent amount of blood that a gunshot victim would every month. Favour action over inaction, and look for this quality in your doctor too.
- Be kind to yourself. Remember you did not ask to have fibroids. The health system, research and practices have systematic bias and underfunding baked into their core when it comes to women’s health. Nobody knows what causes fibroids or how to prevent them. This reality is not good enough and demands urgent change. And yet, there are reasons to be optimistic…
The good news
The conversation and research around fibroids are slowly growing more sophisticated. About 80% of women will develop fibroids before age 50. And 30% of them will be symptomatic. Coupled with a cost of $6 billion to $34 billion in the U.S. alone. Preventing fibroids is a very attractive goal.
Before Kamala Harris’ VP news broke in September, she passed a bill enabling funding worth $30 million annually for 4 years to expand research on uterine fibroids. This is great news, especially since the burden and severity of this disease are prominently felt in black communities.
There’s also more inertia behind a personalised approach to treatments. Fibroids are not all the same. Uteruses are not all the same. You are an individual. You should be treated as such. Treating fibroids with one size fits all approach is slowly being phased out. Even ‘old fashioned’.
This mindset shift is key and important to how we solve this epidemic. One notable technique is 3D printing based off a patients MRI. It can empower both patients and physicians to make better informed decisions. It offers a better quality data point. To quote “a picture might be worth a thousand words, but a 3D version is worth a million words” it can revolutionise the way patients and doctors understand individual anatomy and onward treatment.
The other diagnostic tool in for an overhaul is ultrasound technology. The current constraint is that conventional ultrasounds can not predict which fibroids will become symptomatic and which ones will not. Yet, there are several studies indicating the endometrium leaves cellular clues even before healthy tissue turns into fibroids. This would revolutionise the whole end-to-end experience of fibroids. It would flip it on its head. Instead of being reactive, practitioners could be preventative. Dream scenario.
More broadly, there’s other areas ripe for change. For a long time, there’s been only one classification system for fibroids — the OG ‘FIGO’ system if you will. It’s not robust enough to comparatively talk about fibroids. There’s too much heterogeneity (fancy way of saying fibroids are like snowflakes). They just talk about the location using a 9 point system. It doesn’t take into account stiffness, calcification, necrosis, genetic origin or symptoms. There are variations within this disease. Knowing more can illuminate how we might not just tailor fibroid treatment to a person, but also tailor to treatment to that individual fibroid.
All of this to say, there are more inroads than ever before to meaningfully move the needle into more investigation, more personalised therapies and more clinical prevention. Treatments will look beyond just being proportional to severity. We may one day be able to prevent them.
As this chapter closes, I hope my journey and learnings can pay dividends to other women going through the same, or widen people’s knowledge about this disease.
We shouldn’t stay silent, or suffer in silence. And we can have better outcomes, but only if we’re discussing reproductive health openly.
A very special thank you to a wonderful tribe in my personal and professional life.
Kudos to my amazing friends Florine Christophe for contributing wonderful illustrations to this article, and Linda Lew for being editor extraordinaire. Thank you both for wading through my mind with me.
To all my family and friends, especially my mum and Theca, Hans and dad, who did what they could even across many oceans in a pandemic.
To Club Chombo (nickname for my Kiwi crew), Majd, Bojana, Claire, Simone, Renee and Rute. My cheerleaders.
My thanks extend to all my colleagues. Especially Patricia N and Lauren S, I felt you guys walking alongside me. Sometimes to laugh, sometimes to cry. And everything in between.
And to all those who reached out after finding out about my surgery post-op. I’m grateful for your well wishes. It meant a lot to read the supportive messages and to be in your constellation of thought.
And last but not least, Stefan, how would I have done this without you? I have no idea. Your support, kindness and patience leave me speechless in one of the hardest chapters of my life. Thank you from my heart.
