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The Ethical Implications and Solutions Surrounding the Delayed Diagnosis of Endometriosis

jenro1Endometriosis is an illness that affects nearly one in ten women worldwide. It occurs when cells similar to the endometrial lining found inside the uterus begin to grow outside the uterus, on the ovaries, fallopian tubes, and other areas near the uterus. As the cells grow, patients can experience a variety of symptoms including, but not limited to, severe abdominal pain, migraines, hot flashes, and fatigue [1]. It may also cause infertility [2]. Despite endometriosis impacting so many women, the average time for a patient with endometriosis to be diagnosed after the onset of symptoms is eight to ten years [3]. A patient may see at least eight different doctors before receiving the proper diagnosis [1]. The delayed diagnosis of endometriosis is a prevalent and persistent issue that requires long-term solutions.

The ability to diagnose endometriosis must be improved, as patients may endure excessive and unnecessary years of pain, and in some cases infertility. A delayed diagnosis is rooted in endometriosis being unidentifiable in standard diagnostic tests, a hesitation by heath care providers (HCPs) in attending to a patient’s reported symptoms, and an ambiguous understanding of endometriosis [1]. Rectifying this issue requires multi-dimensional changes. HCPs must be acutely aware of the symptoms and steps to diagnose endometriosis and more inclined to follow up on a patient’s report of symptoms. Also, researchers must further investigate the causes of endometriosis. Together, these steps can allow for more prompt and effective diagnosis.

Studies have identified two main factors that contribute to a delayed diagnosis of endometriosis. One major contributor is that doctors may not investigate incidents of reported pain thoroughly enough. Endometriosis does not appear on tests such as MRIs, CAT scans, ultrasounds, endoscopies, colonoscopies, or blood work [4]. The symptoms are highly variable between patients, and many symptoms resemble those of other medical conditions. The only way to diagnose endometriosis is by obtaining a biopsy during surgery [1]. In the HCP’s office a personal testimony of medical complaints may be the only clue to an otherwise seemingly invisible disease. Symptoms without supporting data and physical findings may bring into question their validity.

Crippling pain is often a major symptom of endometriosis. Patients describe their pain as if “somebody [were] cutting my hip off with a dull blade repeatedly” or if “someone [were] taking a roller and rolling up my insides and then rubbing barbed wire though it”. Endometriosis can cause pain so severe that it makes performing tasks as basic as walking and sitting difficult. However, when reporting these symptoms to their HCPs, patients may be referred to a psychiatrist and asked if their mental health is sound. This phenomenon is known as gas-lighting, in which a person is influenced to doubt his or her own perception and sanity. Also, some doctors are hesitant to recognize the pain, as they may assume that patients are merely looking for a prescription for painkillers [1].

Overlooking a patient’s account of symptoms can inadvertently convey a message that normalizes pain. In an interview, one patient recalls how she saw over ten doctors to manage her pain. Until she met a doctor who finally listened and understood her symptoms, she went more than twenty years thinking her pain was a normal part of being a woman that she needed to accept. When patients believe that experiencing chronic pain is normal and assume that people will not listen, many will be less likely to share these details in the future, which can further delay the time to proper diagnosis [1].

The second contributing factor is the lack of awareness in the medical community surrounding the symptoms, onset, and steps towards diagnosis of endometriosis. Doctors may obtain a history of pain but still incorrectly identify the symptoms as something other than endometriosis. Misdiagnosis is a main cause of delayed treatment.

jenro2Symptoms of endometriosis can be mistaken for other medical conditions. A more thorough awareness on endometriosis could allow HCPs to better identify and diagnose the illness. HCPs beyond gynecologists (such as general practitioners, pediatricians, and gastroenterologists) should be able to identify the signs of endometriosis. The pain is often confused with irritable bowel syndrome (IBS), which is a gastrointestinal issue. Therefore, many women are often referred to gastroenterologists, who prescribe treatments for IBS that are ineffective [1]. Many women experiencing symptoms will first see their primary care doctor (this may be a pediatrician if the patient is an adolescent). Since there are over 176 million women around the world with endometriosis, these doctors will surely see patients with endometriosis during their career. With proper diagnosis, patients will not need to see as many doctors before their condition is properly identified.

Myths about endometriosis exist that also spawn misdiagnoses. One such falsity is that adolescents cannot develop endometriosis. Gynecologists are trained to associate endometriosis with pain experienced during menstruation. Therefore, this line of thinking presumes that females who have not yet begun menstruating cannot have endometriosis [1]. However, studies have shown that endometriosis is dependent on levels of estrogen [5]. Females experience a spike in estrogen at the start of breast development, which occurs about a year before the first menstruation. Therefore, endometriosis is not dependent on whether someone has had her first period [1].

More efforts in research could provide a better understanding of the causes of endometriosis. The effectiveness of diagnosis could be improved if and when this information is available to the medical community. Researchers have already made progress in discoveries noting that endometriosis is an estrogen-dependent disease, has a genetic component, and is related to the location of rapidly spreading stem cells during development. However, no one knows exactly why certain women develop it. In understanding the causes, doctors can better recognize signs and diagnose patients. For example, a patient whose mother and/or sister has endometriosis is seven times more likely to have the illness, although the specific genetic markers involved are unknown. Elucidating such markers could provide an additional diagnostic tool to utilize when discerning if a patient has endometriosis or is prone to developing it [6].

Today, the only way to diagnose endometriosis is to take a tissue sample during surgery. The identification of specific cell types associated with endometriosis culminates in a proper diagnosis [1]. Nonetheless, by the time this occurs many patients may have already spent years enduring pain that has greatly impacted their quality of life, and the illness may have already caused infertility [7]. Although the inherent nature of the disease involves symptoms that are nonspecific, the delayed time to diagnosis must be minimized to decrease suffering caused by this highly prevalent illness. Therefore, earlier detection is essential to giving patients the proper care and treatment. Adopting steps to reach a more effective diagnosis will allow doctors to more efficiently help their patients.

References:

  1. Cohn, Shannon. Endo What? Documentary Film, 2015.
  2. Buck Louis, Germaine M. “Women’s Reproductive History Before the Diagnosis.of Incident Endometriosis” in Journal of Women’s Health, 1021 – 1029.  Larchmont, N.Y.,.2016.
  3. Riazi, Hedyeh. “Clinical diagnosis of pelvic endometriosis: a scoping review” in.BMC Women’s Health, 1-12. 2015.
  4. Ghazi, Negar. “HNMR- based metabolomics approaches as non-invasive tools for.diagnosis of endometriosis” in International Journal of Reproductive Biomedicine, 1-8. Yazd, 2016.
  5. Zheng, Juan “Activin A Stimulates Aromatase via the ALK4-Smad Pathway in Endometriosis” in BioMed Research International, 1 – 10.
  6. Liu, Ji-Long.  “A PubMed-wide study of endometriosis” in Genomics, 151 – 157.  San Diego, 2016.
  7. Riazi, Hedyeh. “Perception and Experiences of Patients with Endometriosis about Pain: A Qualitative Study” in Journal of Mazandaran /University Medical Science, 57 – 69. 2015.

Image References:

  1. https://www.theguardian.com/society/ng-interactive/2015/sep/27/the-pain-is-paralysing-30-women-describe-living-with-endometriosis
  2. https://www.theguardian.com/society/ng-interactive/2015/sep/28/what-is-endometriosis-guide

Jennifer Romanello is a senior at The George Washington University and the president and founder of GW’s chapter of TTH. She will be graduating with a BS in Biological Sciences, and a minor in Applied Ethics.

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