Some years ago I received a phone call from an acquaintance who got straight to the point. Her daughter-in-law could not get pregnant despite insisting she had been trying for years. Surreptitious use of contraception had been ruled out and (of course) there was nothing wrong with her son. Now that the “career-mad” woman had turned the ripe old age of 30, the acquaintance had to take the matter into her own hands to ensure that a child (preferably a boy) was born to perpetuate the dynasty.
I field a lot of calls but this one dumbfounded me as my thoughts rushed to the poor young woman, being dragged from soothsayer to shaman, from oracle to naturopath to relieve a problem that her own family hinted was spurious. To exhort her to consider the young woman’s feelings would be a waste of time so instead I suggested that if she really wanted to help she should find a reputable gynaecologist. “It’s not her fault,” I emphasised.
It took two years to pin down and surgically treat a diagnosis of endometriosis and it would be four years before a boy was born and, for one hapless daughter-in-law, all was right with the world again. There are many objectionable aspects to this story but no less striking was the delay in her diagnosis even in the presence of very significant symptoms. But as the accounts from women with endometriosis submitted to the Guardian show, this experience is par for the course.
Experts say the range of problems associated with endometriosis is wide; the diagnosis is difficult to make and often requires invasive intervention in the form of a diagnostic or therapeutic laparoscopy. Surgery doesn’t always ensure freedom from symptoms. Therefore it sounds sensible to work up the patient, treat any coexisting conditions and exclude other possibilities. After all, no operation should be considered routine. Surgery for endometriosis can be prolonged. Serious complications include perforation of the bowel or bladder, uncontrolled bleeding and fatal blood clots.
Meticulous workup and prudent delay that involves the patient is one thing. It’s called shared decision making, the gold standard of clinical medicine. No doctor is omniscient; guidelines keep changing and it’s impossible to keep abreast of the mountain of knowledge. I think patients understand this. But discounting or plainly dismissing abnormal symptoms such as severe pain, crippling fatigue, heavy bleeding or painful intercourse smacks of ignorance, or worse, arrogance. It’s one thing for a doctor to say, “I don’t know,” but in the age of information there is no excuse for not following it up with, “but I will find someone who does”.
An African fertility specialist anoints endometriosis as the “working woman’s disease’’ associated with ‘type A’ personalities.” I can’t help wondering whether his suggestion to eradicate “time urgency and perfectionism” in his quest to cure endometriosis would have deprived the world of the brilliant works of endometriosis sufferers such as the two-time Man Booker prize-winning author Hilary Mantel, who presumably wrote her books with deadlines in mind and with high expectations of herself.
In her memoir, Giving up the Ghost, Mantel describes severe symptoms from age 11 and writes movingly about being written off by doctors who thought her problems lay in her mind rather than her endometrium. She calls endometriosis “unpredictable, capricious, tenacious, a destroyer of careers, families and relationships” and yet its understanding is steeped in ridicule and myth.
Good treatment can only begin when abnormal gynaecological symptoms are not misconstrued as normal, part of a woman’s cross to bear. Judging by most accounts, endometriosis is up there with the trifecta of hypochondria, irritable bowel syndrome and chronic fatigue as “women’s issues” unworthy of genuine consideration. Imagine advising a man who reports chronic and severe symptoms to quit complaining, curb his career ambitions, enrol in yoga and buy one of those mindfulness colouring books.
As a doctor and a medical student before that, I am privileged to have received thorough explanations and a considered hearing of my concerns, which aren’t comparable to the prolonged suffering of endometriosis patients. But my encounters with a dentist gave me a taste of what it must be like for patients to be thwarted in their attempts to find a doctor who will listen.
To be fair, the dentist and I never had a rapport so it wasn’t its absence that alarmed me as much as his dismissiveness towards me, as if he had concluded that I was a bad patient. My questions didn’t matter and my worries were insignificant. My appointments got shorter while the bills kept growing. He blithely gossiped with his nurse while prodding my teeth; I began leaving his office with slightly cleaner teeth and a sinking heart.
The day he humiliated me in the waiting room should have been the day I left him. But, infuriatingly, I didn’t. I realised that when it came to voting with my feet and switching providers I was no different from all the patients who report feeling stuck with their unhelpful doctor. I didn’t want to be perceived as a failed patient. I didn’t want to be labelled a difficult patient even in the privacy of my own thoughts. Finding a new dentist would mean acknowledging to myself that even with all the skills and education at my disposal I was incapable of mending a faltering relationship, as if somehow his disavowal of my needs was my problem to fix.
I eventually realised there is a fundamental difference between an occasionally grumpy provider and one who is outright dismissive. When you sense your health is being compromised it’s time to act because, once you stop trusting your doctor, even the therapeutic encounters stop feeling so. Being repeatedly dismissed by your doctor is a warning sign. I would recommend switching doctors and ask in writing for a transfer of your medical records. This is your right although some practices charge for what ought to be a free service. Some patients don’t have a choice or wish to stay for reasons of language, culture or other logistics. In that case make a time to discuss your concerns and take an advocate with you.
If there is a diagnosis you suspect that your doctor simply won’t entertain, ask politely why or why not. If you are still not convinced, ask if that doctor has done all that is within his or her capacity before getting a second opinion. Doctors are not only thankful for this but will usually facilitate it. Some experts recommend seeking a “blind” second opinion rather than allowing the first opinion to colour the second. Seek advice but also trust your instincts that something is wrong and don’t give up.
For every doctor who is obstinate, arrogant and contemptuous there are countless others who remember why they entered medicine, to help people. There are doctors who stay awake at night worrying about their patients and go to great lengths to make them better.
Expert help is available for sufferers of endometriosis. Breaking up with an unhelpful doctor is hard to do but then, the doctor-patient relationship is sometimes no different to life’s other relationships. When your health feels compromised by the person supposed to safeguard it, breaking up might be just the medicine you need.
