It is difficult to read the stories of suffering expressed by the women featured in our blog and not become incensed. We can joke about women’s hormone health and deride the science to fringe status, but our failure to recognize, investigate and create options for women has serious consequences. In my mind, this is an avoidable ignorance.
I borrowed that phrase from a quote by Dr. Albert G. Mulley, the new Director of the Dartmouth Center for Health Care Delivery Science. The full quote “no decision should be made in the face of avoidable ignorance” speaks volumes about the state of women’s health care.
How many women have sought treatment for a dysregulated menstrual cycle, menstrual cycle related pain, or other presumably hormonally modulated events only to be sent home without so much as a lab test but with oral contraceptives? Worse yet, how many women have had an endless array of invasive procedures only to receive an uncertain diagnosis and oral contraceptives. This is avoidable ignorance.
Why don’t women get routine hormone testing for what are presumably hormone related conditions? We wouldn’t treat high blood pressure without first measuring blood pressure or diabetes without first measuring glucose. Why then would we treat presumably hormonal conditions, with hormone modifying drugs, without ever measuring hormones before or during treatment? Is the pill so successful at treating all female symptoms that no testing is ever needed? Or is there some avoidable ignorance at play? Judge for yourself.
The most common arguments against hormone testing include:
1. The clinical reference ranges for hormones are too broad to be useful
2. The test results will not modify clinical decision making, so why test
3. Hormones are too complicated and variable
4. A good clinical interview suffices
It’s not that we cannot develop more robust hormone reference ranges, more sensitive hormone testing methods, perhaps link a woman’s unique biochemistry to her clinical symptoms, we just have not. The often repeated excuse that ‘hormones are complicated, variable and too difficult to analyze’ just doesn’t hold true given the state of science and technology today, neither does the clinical interview argument. A good clinical interview is always important and maybe even a lost art in this era of high tech diagnostics, but wouldn’t it be nice if the average time to diagnose some of these conditions wasn’t 5-10 years?
This brings me back to Dr. Mulley and his discussion on ending avoidable ignorance in healthcare. The responsibility, Dr. Mulley contends, rests with the patient. As a supporter of the e-patient movement, Dr. Mulley believes patients have the responsibility to educate the physicians and other decision-makers about what’s important to them. He says “unless we know what you care about, we have no information to inform investment or disinvestment” in any particular area of health.
In this context, it becomes clear, that maybe as patients, we have failed to own up to some of our responsibilities. Menstrual cycle disorders are uncomfortable to talk about. Who really wants to talk about never ending periods or blood clots—that’s just gross. And pain, one shouldn’t whine about menstrual pain, it’s unbecoming. Then there is the brain fog, fatigue, moodiness— all part of being a woman, or at least that’s what we’re led to believe. What if this isn’t normal? What if we, as women, are relegating our health prospects to ignorance? The Susan G. Komen Foundation did not come to prominence through silence, neither did the Endometriosis Foundation of America or any of the other women’s health organizations.
It is when we begin talking to each other and to our doctors that we can make it clear that these things are important; that the paucity of women’s health options is not acceptable. We need to become experts in our own health, to discern what’s normal and what’s not. We must drive the discourse, guide the research and build understanding for ourselves and our own well-being. We can’t wait for someone else to do this for us. Ignorance can be avoided.
Problem is , when you are an informed patient and try to put your point of view across or educate the doctor, you get told “oh dont believe everything you read” or “why are you researching? You’ll only get confused”. They assume as the patient you cant possibly be right, and if you refuse the pill etc you are labelled ‘non compliant’.
You are absolutely correct, but the alternative is remaining silent. I don’t think we can remain silent anymore.
Back in 1995 I started a piece of research for a masters degree in Information Science. The subject was the information needs of a group of women patients who were facing hysterectomy. The most common complaint in that research was ‘lack of information’. Today I am re-running that original research and guess what – the most common complaint is still ‘lack of information’. Without adequate information plus the time to review it, women (and others) will continue to be unclear about the benefits they can glean from such things as hormone screening. There is a need for better informed GP’s and consultant staff who look forward to seeing enlightened and informed patients who take an interest in their own health.
It is hard enough to wait 5 years, or even a decade, for a diagnosis. It may be even harder facing multiple misdiagnoses over those years. But, I still believe that better patient-doctor communication, understanding, and listening, combined with progressively increased and improved health research, human compassion, and mutual respect, could make a world of difference in mental/physical health and the healthcare system, alike.
I totally agree with the author of this article! May I add that perhaps one factor is that we tend to unconditionally trust the doctor? Most women tend to not question what a doctor has to say. We have to become proactive patients and educate ourselves as well. Dare to ask a question. Take charge of your life. Let’s talk, compare, discover, develop and help.