Attempting to manage an incurable chronic illness such as endometriosis feels like pushing a boulder uphill. As there is no cure, people like me who suffer from the disease are constantly trying to find as many ways as possible to manage our daily pain. We want to make endometriosis our invisible ‘friend’ that we can manage, to ensure it does not impact upon our career, home life, friendships, and physical and mental wellbeing. We want to be free from chronic pain, we want to stay out of hospital, and we want to function like everyone else. But unfortunately, for many, reaching the state of ‘managing’ our endometriosis or ‘friendo-metriosis’, as I have decided to name it, is not possible. For many, endometriosis remains our biggest foe and one of our greatest challenges. With misinformed specialists, dismissive and misogynistic doctors, and judgmental people in our personal and professional lives, it is no wonder this incurable disease is a daily struggle for so many.
So, what is Endometriosis?
Endometriosis is a chronic, systemic, inflammatory disease in which tissue similar to the lining of the uterus grows in other parts of the body. As an example, endometriosis has been found on the bowel, ovaries, pelvic wall, bladder, pelvic nerves, lungs, and has even been found in the brain. Endometriosis has often been labelled as a ‘women’s issue’ or a gynaecological disease, however, endometriosis is a whole-body disease that causes a myriad of horrendous and debilitating symptoms. Furthermore, endometriosis does not only affect women – it affects all people with uteruses.
Countless people suffer from endometriosis in Australia, and it is estimated that 190 million people worldwide suffer from the disease (World Health Organisation, 2021). I am of the firm belief that this number is inaccurate and maintain that there are, in fact, more than 190 million sufferers worldwide, considering it takes an average of 6.5 years to be diagnosed with the disease (Endometriosis Australia, 2022).
Endometriosis symptoms can vary from individual to individual, but range from debilitating menstrual cycles; irregular menstrual cycles; heavy bleeding and the passing of blood clots; painful urination; pain during penetrative sex; painful bowel movements; rectal bleeding; lower back pain; leg pain; nausea; fatigue; abdominal bloating; pelvic floor spasms; constipation; diarrhea; IBS; anxiety; depression, and the list goes on. The only way to adequately diagnose endometriosis is through laparoscopic surgery, which, despite what medical professionals assert, is a highly invasive surgery. Additionally, there is only one gold standard method to remove endometriosis, which is called excision. Excision occurs where the endometriosis lesion is cut out from the root, and not merely burnt at the surface (which is known as ablation). Despite excision being the gold standard treatment, there are very few surgeons worldwide who are trained to perform this surgery, meaning many sufferers undergo multiple inadequate surgeries that do not address the disease. Currently, there is no cure for endometriosis, and many who suffer from the disease face gaslighting from the medical profession and from the general public. Society is founded on a lack of understanding about the disease itself and has a lack of empathy and compassion. Endometriosis is listed in the top 20 most painful conditions a person can experience, yet, so many sufferers are treated as if they are drug-seeking, doctor-shopping, hysterical hypochondriacs, and this narrative needs to change.
My name is Sofia, and I am an Endo Warrior. During the past year, I have been diagnosed with endometriosis, chronic pelvic pain, chronic fatigue syndrome and fibromyalgia. In the past 12 months, I have undergone seven surgeries related to my endometriosis and have spent over 114 days in hospital with countless trips to emergency. During this period, I have had over 60 blood tests, 30 emergency trips, 25 hospital admissions, 7 general anaesthetics, 6 ruptured ovarian cysts, 4 pelvic CT scans, 3 ketamine infusions, 3 ICU admissions, 3 colonoscopies, multiple cannula insertions, multiple speculum exams and too many specialist appointments and pelvic ultrasounds to bother counting. My endometriosis went undiagnosed for 8 years, despite my complaints of extreme pelvic and abdominal pain commencing when I was 13. I was misdiagnosed with irritable bowel syndrome for years, until I was finally validated. But, by that point – the damage was done. My endometriosis had already infiltrated my bowels, pouch of Douglas, ovaries, and uterosacral ligaments.
It seems counterintuitive to say this, but when I was finally diagnosed with endometriosis, I felt such relief. Although I knew this disease would be a life sentence, I felt validated. I knew my pain was real. I knew it was not in my head. I finally had answers! In order to finally obtain a diagnosis, I had to fight with doctors, advocate for myself profusely and had to manage the mental fatigue that comes with being constantly medically gaslighted, by a profession whose sole purpose is to care for their patients. Alongside this medical gaslighting came societal gaslighting from some friends and family, who continued to insinuate that the excruciating pain I was experiencing was “all in my head” when in actual fact the pain was predominantly in my pelvis. The doubt others demonstrated towards my intense pain has caused me great distress, and there have been instances where I doubted myself and questioned whether I was just a hormonal hypochondriac. I finally snapped out of it after a while and reassured myself that I do have endometriosis, and I do not have to justify myself to anyone!
The pain I experience is stabbing, sharp, and electric. Often, my pelvis feels as though it is burning. I vomit and belch from my pain on a regular basis. I need assistance walking upstairs most of the time. I am 22 years old, and I use a shower chair. Often, my pain feels as though a puppeteer is manipulating my ovaries, attempting to rip them out of my body, along with my uterus. I am often petrified that with one wrong move, I will either collapse or have my pelvic organs effortlessly fall out of my body. My pain is relentless, exhausting, debilitating, and discombobulating. I spend most of my time attached to my TENs machine. If I don’t have a TENs machine on, I can guarantee I will be using a heat pack or hot water bottle. My ‘emotional support’ heat pack, as I like to call it.
Not only do chronic illness suffers have to deal with chronic pain, but we also have to deal with weakened immune systems and something I like to call ‘chronic illness symptom roulette,’ in which you try and ascertain whether or not the new symptom you are experiencing is a cold, Covid, your regular chronic pain, a new symptom, a side effect of a medication or a withdrawal effect of ceasing a medication. In addition to this, the medical gaslighting we face is abominable.
I am often met with ignorant phrases from some medical professionals such as:
‘You are too young to be sick.’
‘You do not look sick.’
‘Take some Panadol.’
‘I think the pain is in your head.’
‘You are too petite to be in this much pain.’
‘You seem like another hysterical young girl, maybe see a psychologist.’
I have encountered many uneducated, arrogant, dismissive, and misogynistic doctors throughout the past year, and one story, in particular, has really traumatised me.
Two weeks post my most recent surgery, I was unable to move my bowels despite multiple precautions, and as such, my already excruciating post-surgical pain skyrocketed. I was also vomiting profusely, and was worried about becoming dehydrated. I decided to go to emergency after exhausting my extensive at-home pain relief routine. When I arrived at emergency, I reported my symptoms to the doctor, who looked at me in sheer disbelief with a smirk on his face. He then proceeded to examine my visibly distended abdomen and shouted at me to stop ‘pushing my abdomen out’, insinuating that I was faking my bloat. To put this into perspective, my abdomen looked as though I had swallowed a helium balloon and I was by no means, pushing my abdomen out.
This doctor refused to give me any proper pain relief and refused to take any blood. After hours in emergency, with worsening pain, I politely asked the doctor if he could perhaps give me some fluids to help my bowels along, or if he could give me some pain relief other than Panadol, to which he responded, ‘just wait it out’. He also mentioned that he did not believe that I was allergic to the medications I had identified and insinuated I was lying about my allergies to obtain ‘better’ drugs.
This doctor also told me that I needed to understand that discomfort is a part of life and understand that there are other people out there who are suffering from ‘far worse’. He was making out as though my pain was insignificant and was suggesting that I was ‘weak’ for even attending to emergency. He was undermining my pain and making me out to be a hypochondriac who had no place being in emergency. I did not need to be lectured about accepting discomfort when I live in a constant state of discomfort, and had just undergone my seventh surgery in less than 12 months. After another hour passed and I asked again to be given some adequate pain relief, the doctor snapped at me. He told me to stop asking for pain relief because he had already given me Panadol. He made some extremely nasty comments that I do not feel comfortable repeating. However, he basically insinuated that I was a drug-seeking, doctor-shopping, self-sabotaging, anxiety-riddled 20-something-year-old who was doing nothing to help herself, despite the fact I have tried what feels like every natural and medical remedy under the sun to better my situation. He proceeded to tell me that the pain was all in my head, despite my visible bloat, and four oozing surgical scars. There was a reason for my increased pain, which this horrible doctor would have identified, had he listened to me.
I could not help myself, and I began to cry. Everything the doctor said to me was laced with judgment and nastiness. He did not attempt to comfort me at all once I began to cry, but rather, pulled the curtain closed, frustrated at my display of pain and emotion. After a while, the doctor rushed back into my room and stated that he should admit me to hospital for pain relief to ensure my pain is managed. I could not understand how the doctor who was refusing to treat me in emergency wanted to admit me for pain relief. The hypocrisy. There was no way I could have mentally stayed in hospital after how that doctor treated me. I cried for over 48 hours upon arriving home and ended up at a different emergency three days later with a ruptured ovarian cyst, on top of my post-operative pain.
This is only one of the many instances of medical gaslighting I have experienced and I am sure it will not be my last. These experiences are not exclusive to my journey either. Almost every person I know with endometriosis or chronic illness has faced similar treatment and it is unacceptable. The gaslighting we sustain exacerbates our symptoms and adds to our already burdensome life. When doctors do not believe me, I tend to question my own sanity and my own reality. I begin to wonder whether my symptoms are psychosomatic, even though there is a physical cause for my pain. This negatively impacts my self-esteem, and often, makes me spiral into a pit of anxiety, while simultaneously exacerbating my physical symptoms. However, not all doctors engage in this belittling and unprofessional behaviour and there are many compassionate, informative, and understanding practitioners out there. In my experience, having a doctor who makes you feel comfortable improves your symptoms and makes you feel validated and at ease. This is how one seeking medical attention should feel!
Even though I was diagnosed with Endometriosis in 2021, every time I think about the fact I have this insidious disease, I feel shocked, sad, anxious, angered, depressed, deflated, fearful, frustrated, and hopeless. Whilst it was initially liberating to finally receive a diagnosis, after years of being gaslit and told that I was just a ‘type-A personality, perfectionist, stress head’, the liberation has well and truly worn off and has morphed into sheer exhaustion. I often experience panic attacks before going to the doctors or seeing specialists due to the ignorance and judgement I have faced. The gaslighting did not end upon receiving my diagnosis. If anything, it became more prominent.
I cannot help but feel like a broken record and I know people are becoming desensitised when I tell them I’m back in hospital or that I just had surgery. I feel as though some people think I should be used to the pain by now, and therefore, able to function like everyone else. I will never be used to this pain, nor should I have to. One of the hardest realities of chronic illness is that over time, people stop caring, lose compassion and forget that you are suffering. The longer you have had an illness, the more familiar and predictable it becomes to those around you. Your pain and symptoms no longer register as something others should be concerned about, nor is your pain treated with the seriousness it so clearly deserves. Rather, your pain becomes the subject of frustration, anger and apathy. People expect you to suck it up and get over it, but with chronic illness, it is not that simple. Time does not heal. It is a constant battle of identifying triggers and attempting new therapies often without seeing any improvement.
I recently saw a quote that resonated with my chronic illness journey:
Stay sick and you are not trying hard enough.
Make improvements and you were faking your symptoms all along.
Share your reality and you are attention-seeking.
Keep the struggle to yourself and you are not really sick …
This quote elucidates the judgment chronic illness sufferers endure, on top of the excruciating existence of living in constant pain. This judgement needs to stop. Navigating chronic illnesses is not linear – it is bumpy, rough, uncomfortable, and potholed. It is hard enough having to manage symptoms and complete everyday tasks, whilst advocating for yourself and educating others without the fear of constant judgement and ridicule. I cannot help but get angry when I hear ignorant people speak of chronic illness as if it’s some sort of reality they have ever had to contemplate. My plea to those lucky enough to have their health – please be compassionate, patient and understanding of those of us who do not possess such a luxury. To anyone suffering from a chronic illness, you are not a hypochondriac, and you are not alone.
Author: Sofia is in her final year of studying a Bachelor of Business (Law) and is an advocate for those suffering from chronic illnesses. Sofia has been battling multiple chronic illnesses over the past year while attempting to work, study and speak up against medical gaslighting.
Artist: Steph Blinco is a third-year Bachelor of Fine Arts student. As a local Brisbane emerging artist, her practice makes statements about everyday life through collaged imagery. Intertwining psychedelic patterns to create collisions of colour and era, Steph draws influences from autobiographical contexts, ranging from her childhood to her experiences now as a young adult. You can find her on Instagram @stephblincoart.