Notes on Women in Pain
A story of neglect in medicine, and the emperor of all maladies.
Warning: This post contains themes that may be upsetting. It’s going to be very heavy. Very personal. I had to get this written down, so something can take some of this weight off the heart.
This post is not going to be my typical just-the-facts-ma’am kind of thing. This is deeply personal and deeply serious. I normally try to keep control of my emotions in my writing, especially anger. Not this time. I cannot remain silent on this. I will not be complicit in the mistreatment of Women by the medical establishment.
Hell hath no fury like the children of suffering parents.
Especially when that suffering could have, and should have, been prevented.
Here goes.
Pain.
All-consuming.
Stops the mind from turning.
Tick. Tock. Tick. Tock.
You sit, watching the clock on the wall, hearing it tick over continuously. Hoping that it will stop eventually. Stop, and let you think.
Let you live.
Mum has developed a super-human ability to withstand pain. Years ago, she called me up one day to tell me that she had fallen over and sprained her arm, and had put it in a sling. That was all. She said it had been hurting “a bit”, but she didn’t think it was broken.
I urged her to get it checked out by the doctor.
“It’s just a sprain, they’ll just send me home and tell me to do what I’m already doing.”
Honestly, she wasn’t wrong. They almost certainly would have.
It took 2 weeks of relentless pain before I finally convinced her to at least seek an x-ray at the hospital. When she did, doctors found a large portion of the bone in her arm was shattered, in fragmentary pieces. The ER physician brought several colleagues in to meet her because they could hardly believe she had been walking around for 2 weeks with a shattered arm bone.
That was classic Mum stuff. Putting aside her own suffering, marching on regardless. Loathe to ever complain “too much.”
Women’s symptomatology is often different for many things when compared to men. Some of this is simply because their physiology is different. Some of it is because their neurology as well can be different.
Sometimes it’s because their lived experiences make them feel the need to temper things, not to make it seem too serious, in order to avoid the perception of being “over-dramatic.”
For years, she has had to take variable amounts of a Paracetomol/Codeine combination, the weakest of all opioids on the market. She has fused ribs, sprengels shoulder, fibromyalgia, and osteoarthritis, so obviously it’s not all “in the mind.”
She also watched her own younger sister - who was a doctor herself - develop a crippling addiction to Oxycodeine, and eventually commit suicide.
Because of that, she has always been self-limiting when it comes to anything which can treat pain, especially opioids. Sometimes, however, there is just no other option. You can’t just suffer all the time. Something’s got to give, eventually.
So, when she tells me the pain she’s in is serious, there is no doubt in my mind that it is beyond the cautionary point.
Something is wrong.
For those of us that are listening, we can hear the drumbeat of patriarchy slowly being drowned out by all the other voices it had once suppressed throughout the world of human endeavours.
This drumbeat, however, still echoes loudly in the great halls and corridors of the House of Medicine.
It thunders above the sound of women in agony.
In order just to exist in this reality, women have had to find ways to adapt to pain because no one will help them, far more often than Men do. Men’s pain is often treated.
Women’s pain? “It must be psychological.”
I come from a family of pain-suffering people. My dad endured an extreme form of Crohns disease for 40 years before it eventually killed him. In and out of hospital he went, as the surgeons knife cut away more and more of his dying colon, the victim of friendly fire under bombardment from his own immune system.
Previously healthy, normal cells, were forced to commit suicide by the chemical signals raining down upon them from a microbial defence system gone completely mad. Often hooked up on a morphine drip to ease the severe suffering, he wasted away gradually. One of the last times I saw him alive - again in hospital - he hardly looked it; yet he managed to live on for another half-dozen years after that.
When I saw him in his coffin for his funeral, his frozen, embalmed face was exactly the same as the one I saw in that hospital bed all those years before. Gaunt, grey/white. Empty. Pained. Practically dead.
My mum, born in the breach, shoulder dislocated at birth and ribs fused and deformed, she lived her whole life where one arm could not be raised above her head; yet she still managed to join the Royal Australian Army Reserves, teaching drill to her platoon made mostly of men 3 times her size (and she was damn good at it).
She served her country in the public service, attending to the needs of Australians overseas who found themselves in the worst kinds of trouble far from home. She often needed to be the first on the scene of an airplane crash if any Australians had been on board, so that she could have remains identified.
When we returned to Australia following a chloroquine-resistant infection of Cerebral Malaria, she was in chronic pain from then on; she also had acute PTSD from experiencing the burned wreckages of airplanes and charred bodies in morgues that she had to deal with, along with major clinical depression and cyclothymic ups and downs.
Not only that, but the sheer hostility from her male colleagues at a Woman doing such a high-powered job, and doing it better than all of them combined, was relentless. They never, ever let her rest. They never let up. Meanwhile, instead of doing their own jobs, they would play solitaire all day, and throw extreme insults, many sexual in nature, at her, or share them around the office about her, to everyone they could.
If the internal communications of those days still exist somewhere, I think they would tell a remarkable story of male hatred and rage and entitlement which saturated Australia’s public service throughout the 80s and 90s, and in all honesty, probably hasn’t changed as much as we think today either.
Regardless, she paved a pathway for women to achieve high-ranking positions, and through that, she changed the world for the better.
Those world-changing efforts left her with terrible scars. Scars that eventually sapped her strength and broke her will. PTSD, Chronic fatigue, along with chronic pain, and extreme flare-ups of her life-long depression ended the career she loved.
Then, there was the cancer.
Cancer survivors are a special breed. They live the rest of their lives under the sword of Damocles. It can reappear years down the line, having evaded detection and removal, slipping into the lymphatic system of the body and colonising organs, bones, brain. By the time it’s found, it can be far too late.
By then, it has conquered, becoming the Empire of All Maladies.
We thought we had caught this one just in time. They hit it with everything. They cut out a very large mass, they blasted the area with radiation, then they starved any remnants of the estrogen it needed to grow.
Every check-up since then has been in the clear. No cancer found.
Until now.
One woman was told she was being “dramatic” when she pleaded for a brain scan after suffering months of headaches and pounding in her ears. It turned out she had a brain tumor.
Another was ignored as she cried out in pain during a 33-hour labor. She was supposed to be getting pain medication through her epidural, but it had fallen out.
Dozens of women complained of torturous pain as their vaginal walls were punctured during an egg retrieval process. They were told their pain was normal, but, in actuality, they were getting saline instead of anesthesia.
Washington Post | From heart disease to IUDs: How doctors dismiss women’s pain
The first smell that hits the nostrils when first walking in to the Cancer Centre is the smell of disinfectant. The second is the smell of the gel lubricant they use for ultrasounds.
I’d just flown in from Melbourne. The flight was delayed, and we spent another 45 minutes on the tarmac. I was overwhelmed. The sun was setting. I had been warned that she “looked sick”. I had no idea what I was going to find.
When I finally arrive in the B-wing, mum is laid up in a fairly large room. I knock.
“Hey mum.”
She sits up. “Meebs! The pain is so much better!”
She shows me the morphine pump she has to carry around with her. It’s about time. Her voice is no longer strained, words no longer stopping and starting.
She’s as fluent and lucid as I’ve ever seen her, visibly showing only the signs of age.
“It is such a relief not to be in pain anymore.”
It is, for me as well. She doesn’t tell me all the details of what she went through, but I gather it from the discussions she has with various nurses and some of her comments, and piece it together. She had been brought to tears - something that almost never happens with her - and was on the floor, writhing in pain.
About one month before, sometime in mid-late August, she had reached a breaking point. Pain had seeped through into her consciousness and was agonising. It was everywhere. It was bad enough that it had forced her to seek help from doctors, who she worried would merely dismiss her, as they so often do.
I wasn’t so sure. I have a lot of trust in the medical system. Then again, my experience is that of a straight white male. She texted me her commentary, as I texted back encouragement.
She sat in that waiting room for hours. More hours. Pain surging, all-consuming.
It took an entire day sitting in that waiting room before someone finally came to see her, and tried Oxycodeine: failed. So they tried Endone: that failed, too. It didn’t make her pain worse. It gave only the slightest of improvements.
The doctors shrugged their shoulders. They decided that was all they could do, and would send her home with less than a small handful of Tapentadol, a synthetic form of Oxycodeine, very similar to Tramadol. It hardly even took the edge off, and lasted hardly a day. It was all she would get, though.
They told her she’d need to follow up with a GP. With her normal GP out of action for a month, she’d have to see someone new.
So, reluctantly, she went to see a new local GP, asking them to refer her to a pain specialist to get this pain under control.
Immediately unsympathetic and suspicious (pain doesn’t really exist, after all, so anyone talking about pain must be a drug addict), the GP looked at the discharge notes from the hospital.
Guess what it said?
“Opioid-Induced Hyperalgesia”.
That means: Pain caused by opiates.
Upon seeing this “diagnosis”, that was when all hope of medical care was gone. Mum was simply asking to be referred to a pain specialist.
The utterly inhumane GP said “No”.
Why?
“It would be too confusing for me to receive the reports from the pain specialist since I’m not your normal doctor.”
Holy fucking quackadoodles Batman, it’s almost as if you can’t just specify in the referral letter that the reports need to be sent to multiple people! Are you for REAL?!
Now, I am loathe to proclaim bullshit from a doctor, but let me tell you, that is some rare Grade-A purified hydroponic gold-plated Bullshit. Not only from the GP who utterly abdicated their duty of care for my mum, but from the Hospital, too.
How do you diagnose Opioid-Induced Hyperalgesia? Let’s take a look, shall we?
From the 2021 paper: Wilson, Sylvia H et al. “Mechanisms, diagnosis, prevention and management of perioperative opioid-induced hyperalgesia.” Pain management vol. 11,4 (2021): 405-417. doi:10.2217/pmt-2020-0105
Opioid-induced hyperalgesia (OIH) occurs when opioid medications worsen rather than decrease pain.
Hear that? The truth shall set you free, so they say.
Had any of these doctors ever been briefed on this before slapping on the diagnosis? Do they have any idea of the implications of misdiagnosing OIH? Do they have any sense of duty of care for a patient that has come in, who is in some of the worst suffering of their lives, clearly not well enough to be sent home?
They didn’t even explain the diagnosis to her, nor explain how to treat it.
When a former cancer-patient comes in to a hospital with extreme pain, how is it ever appropriate to send them home for later GP follow up when they are still in that state? What the fuck exactly is the GP supposed to do anyway? If Endone barely takes the edge off, what are the alternatives?
This kind of pain is enough to drive any rational sane person to suicide. This is no joke. Alas, these highly-trained, highly-experienced medical professionals seemed to see it as such.
A joke.
So mum does her best to soldier on, meanwhile the pain is escalating every single day. She is writhing. She gets to hospital again, only for them to send her away once more.
Now it’s getting really, really desperate. She manages to get on the phone with the Oncology people who had been managing her post-cancer recovery. They told her they’d been requesting the Emergency Department to send her in to the Cancer Clinic for tests immediately, both times that she had been in there.
Instead, the ED sent her away both times, ignoring the oncologists.
So she finally goes in for a Bone scan, and awaits a call about the results.
Days go by.
Eventually, she’s reached total breaking point. An ambulance is called. They rush her in to Emergency again. This time, when they look at her records, there is a sudden realisation.
Her bone scan report was in.
Her spine is riddled with tumors. The pain is primarily caused by the growing tumors in the vertebrae, crushing nerve fibres along the spinal cord. It is also one of the most excruciating types of pain a human being can experience when it is untreated. She’s been suffering from this for 2 months, while asking for help and getting none.
She had been booked in for an appointment for the day after the bone scan, but no one had told her. No one had called, either to tell her about the appointment, or to check in on her when she inevitably missed it.
No text, no email, no call, nothing.
It had been yet another week, yet another unnecessary week, of desperate suffering.
Week after week after week.
Everywhere she had turned, they had dismissed her. Ignored her. Sent her away. Treated it as if it was not a real problem. Treated it as though it were not the dire emergency that it was.
There is a word for this shit that I am so very hesitant to ever use in a medical context because of the implications, but if there’s any time where the definition fits, it’s this time. It’s a word with deep roots embedded in the hard clay soil upon which the house of Medicine was built.
The worst part is, this is not even just a single incident.
When it comes to women in pain, that word is: Negligence.
I’m fed up.
Thank you for writing this. Researchers recently discovered that women burn through anesthesia faster than men- finally explaining the fact that I’ve woken up in the middle of every single medical procedure ever performed on me. I’ve had IUDs since 2005 and have gotten used to managing that particular pain after four replacements over the years- worth it to endure a minute of agony. But the last one I had done, the doctor brutalized my reproductive organs so badly for so long I was blind and screaming and felt like I was being viciously raped. I had sobbing PTSD flashbacks for months. When I asked my psychiatrist if he could recommend a therapist to deal with the trauma his response was, “IUDs are always painful; I did a rotation as a resident. Are you sure you read the consent form?” I’m sorry about your mother and I’m sorry that this is the real state of things, but I’m glad people are writing about it.
This is a difficult and emotional read on multiple levels, but thanks so much for sharing it Nicholas. The love you have for your mum shines through so much here, and it must be so hard to see her suffering like that. I really hope she can get connected to the supportive healthcare team she obviously needs. So sorry you had this experience.