a decade to diagnosis: why women with endometriosis continue to suffer for far too long
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it can take as long as a decade to get diagnosed with endometriosis, with wait times to see specialists or get diagnostic tests spanning two years or more.
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the one in 10 women and girls of reproductive age who develop endometriosis, a chronic, painful disease affecting the female reproductive system, will have to wait five to 10 years, on average, just to get a diagnosis.
the condition causes adhesions on pelvic organs, scar tissue and inflammation, all of which lead to severe pain and a poor quality of life for those who have it.
the barriers to care fall in several camps: the health-care system overall, the lack of knowledge and awareness surrounding endometriosis and the long-standing bias toward women who present with pain and other conditions.
the long-standing dismissal of women
women have been dismissed all throughout history when it comes to medical complaints, and while that is an entirely different conversation altogether, endometriosis diagnostic delays occur partly because of that continued bias.
women are often told that it’s normal to have pain during a period, even if that pain is extreme, and they just have to live with it. the dismissal has become so widespread that women themselves begin to believe it.
“a lot of women are dismissing their (own) symptoms because they’ve been told by previous providers, ‘okay, this is just something you have to deal with. you have period pain. that’s just something you have to deal with as a woman,’” said nurse practitioner rachel faubert. “it really creates that barrier for women to really speak up about the issues that they’re having because they have been brushed under the rug so many times.”
the issue with this is that endometriosis can escalate and worsen over time. symptoms get worse, the tissue can grow further into the abdominal cavity and affect other organs, and it can even lead to infertility.
even as that pain worsens, “we are told that having pain is normal as a woman,” said nanette sene, ceo and co-founder of juno technologies, a tech start-up developing a lasting, drug-free option for menstrual pain relief.
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this normalization of women’s pain only further perpetuates the idea that, regardless of how severe something is, no one’s really taking the time to listen, so they’re on their own.
“it has that internal, well, this is just something i have to work through. i have to suffer through on my own,” said faubert. “it’s honestly like medical gaslighting in a way that, again, women across the board, women’s health issues are, i don’t want to say used to, because i don’t want anyone to be used to that. however, there really is such a lack of push for women’s health issues.”
lack of interest in women’s health across the board
health-care providers may not be privy to their own biases, or they may just not have all the answers when it comes to endometriosis because of one other significant factor: research on women’s health is nowhere near where it should be. in the past, women as research subjects were left out of the equation for fears of variables that could skew data, such as the menstrual cycle.
but it’s not just that. research into women’s health topics, such as endometriosis, is also lacking.
“that’s a sector that’s very much underfunded, under-researched and under-diagnosed,” said sene. “that all ties together. if the science is not looking at it, not funding it, we don’t even put interest in it. it’s normal that we don’t see progress or changes or early diagnosis.”
because the research isn’t there, it’s not well understood by the health-care providers who are the first point of contact for women with symptoms—symptoms that can also point to other areas of the body, alongside the reproductive system.
“there’s so many symptoms that can be along with it,” said faubert. “those gastrointestinal symptoms even just generalized fatigue that’s better seen with having an iron deficiency or thyroid disorder, just like unexplained tiredness. even pain with intercourse, pain with urination and general pelvic pain that’s not related to having a period.”
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these “all-encompassing” symptoms can be a part of many disorders, some of which are highly studied and researched well beyond where endometriosis has been simply because it’s considered a woman’s disease.
the interest surrounding these diseases, curiosity that could drive change forward, is also lacking in other areas that play a role in getting eyes on the changing landscape of human health.
“as well with the press and with scientific interests, we are going to be stuck in a loop where we are not interested in a problem, we are not solving it and we are just not even diagnosing it. it’s all a big, big, loop,” said sene.
failure of the health-care system
when it comes to actual diagnostics, getting adequately tested or being able to sit down with specialists who are well-versed in endometriosis is another significant hurdle that’s often too high to jump for many women.
it can take months to get non-invasive preliminary tests, such as an ultrasound, across the country, and up to 18 months for an mri; then it can take 18 months or more to see a specialist. even then, women may walk away with a “there’s nothing here” because of how few diagnostics have been developed for endometriosis.
“it’s not really accessible to the public, so i can’t go and get tested for my endometriosis the same way i would get a screening or something for a broken bone,” said sene. “the standard of canada is you need an intervention with a specialist, with a gynecologist, so just having access to a gynecologist is quite a hassle … it takes a long time to get an appointment, and then, if you have to schedule a surgery or you have to schedule something that’s not just a quick meeting, a quick appointment, it’s pretty complex.”
the lack of research mentioned above also extends to how the health-care system operates, how much health-care providers learn about these topics, and how little they learn in advance of their careers. because, even now, endometriosis and other women’s health topics are “brushed over” in medical training.
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“within my schooling that i received, there’s not really much focus put on it. it’s like, okay, well, this is a potential for it, but you know what? you can just pass it off to a specialist, and they can do the diagnosis and management. when realistically, within the primary care setting, within that preventative health-care setting, we can do a lot of that,” said faubert.
what can be done? blood workups, imaging tests and other general diagnostics that could help rule out conditions that may mimic endometriosis symptoms, to actually “start the process” instead of waiting years to really understand what’s going on in a patient’s body.
the current golden standard of endometriosis diagnosis, the only option that women have that truly shows the deep tissue, is a laparoscopic surgery, but even getting to that point is a fight because “it’s not considered an urgent thing.”
“you’re on the wait list for one to two years, at minimum, for it, or at least in the area that i’m in,” said faubert, noting that if more awareness was available, it wouldn’t have to be that hard. endometriosis could very well be a clinical diagnosis.
“but if all the symptoms are there and they’re not better explained by another diagnosis that we’ve done some preliminary workup for, we can provide that diagnosis to them. research backs that up.”
consequences of delayed diagnosis
all the hurdles and hoops that women have to jump through are not only worsened because of their condition. it’s a challenge to fight for your right to diagnosis and care against stigma, bias and of course the inevitable lowered quality of life.
“i’ve seen cases where it’s so severe where they cannot go to work. they’re using up all their sick days and using their vacation time,” said faubert. “i’ve seen that they can’t even participate in their children’s extracurricular activities because they’re in so much pain and just either so tired, so drained that they just can’t participate in those milestones that their families are having or even their personal milestones.”
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it also seeps into their mental health, leading them to doubt their own experiences and force themselves to sit on the sidelines of their own life.
“we all have sick days where we’re not feeling well, and just imagine living that on a daily basis, how much that would weigh on you,” said faubert. “you just start to play that cyclical role, that almost self-deprecation, being … ‘maybe it’s just me, maybe i’m making this up, maybe it’s not as bad,’ which further reduces mental health and quality of life and puts individuals at a higher risk for depression disorders.”
in some cases, people may reach for other ways to cope as well.
“that could potentially lead to addictions that are present just to try and manage your symptoms on a day-to-day basis to be able to do basic activities,” said faubert.
there are companies out there trying to make change, such as tech startups pushing for better diagnostics. for example, some startups are trying to find blood biomarkers that could be used to diagnose endometriosis without invasive surgery, or to detect the disease using blood from a period. software companies are also harnessing technology to enable self-reporting of symptoms and diagnostics in ways that could move things forward.
women-focused health companies geared toward working with women specifically with endometriosis and other reproductive-related health issues are also popping up in efforts to open the door to women looking for a provider who will simply listen to their complaints, take them seriously and go from there toward diagnosis.
“a lot of women do have a negative experience with health care … so it’s helping to create a very positive environment and really hearing patients and what they are actually going through and just giving them validation that their symptoms are real and what they’re experiencing is real,” said faubert.
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with so many barriers in front of women when it comes to endometriosis, it’s hard to see the light at the end of the tunnel, but people in the health-care industry continue to get a little louder, working toward change.
“it’s trying to create more noise about women’s health and reproductive issues because i feel like the more noise that is created, the more likely that there is going to be further advocacy for it and that it actually will become the norm to do all these workups off the bat across the board,” said faubert, adding the noise will also help to “implement more education within practitioner schooling to really kind of push this forward because it is more common than what we know.”
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