Why a Decade-Long Search for a Diagnosis has Made Me Question Everything
March 31, 2016
by Emma M.
What does a diagnosis of endometriosis really mean for women? Recent figures suggest that 10 percent of women are living with both endometriosis and chronic pelvic pain, and point to the failure of the medical industry to regard women’s reproductive health concerns with the same compassion, expertise, and treatment afforded to men. In Canada, the legacy of the forced sterilization of Indigenous women, the ongoing repressive climate towards sexual and reproductive health, and the lack of medical professionals literate in trans health issues all contribute to an environment where potential bias, negligence, misdiagnosis, hostility, and misogyny characterize addressing health concerns associated with female assigned reproductive systems. The doctor-patient relationship, already coded by an institutional power imbalance, becomes even more difficult to navigate when implicated with a medical practitioner’s perceptions of and patient experiences of race, class, embodiment, gender presentation, sexuality, mental health, sexual trauma, and inherited legacies of institutional and intimate abuse.
To be a patient is to be vulnerable, it is to be subjected, and it is to be submissive. My own experiences of being, among other things, white and educated, working class and bisexual, have labelled me in critical ways as I navigate the medical establishment as a patient seeking diagnosis for endometriosis. I have been living with chronic pain related to my reproductive health for almost fifteen years, and chronic anxiety inherited from this culture my whole life. When it comes to reproductive health issues, those of us who possess female reproductive organs cannot escape the inscription of being seen as female as our bodies are opened up, prodded, and internally investigated by every specialist we encounter.
To other young people with endometriosis-like pain: I write to warn you that our bodies may not be met with care or concern when we most need it; in our sometimes desperate search for compassionate treatment by the medical system, we may be putting our health at a greater risk. In my decade-long attempt to find a diagnosis for endometriosis, I have been subjected to: invasive and unnecessarily painful diagnostic tests; hormonal treatments that caused psychological distress and painful physical side effects; repeated anxiety and shame caused by digging into my medical and psychiatric history; loss of work hours, physical strength, and overall health; and a frustrated sense that my own knowledge about my pain and my body is unintelligible to many medical professionals.
I have been chasing a diagnosis of endometriosis for over a decade. I first encountered the disease as a vague but potential diagnosis for my painful menstrual cycle symptoms in my early twenties. I say potential, because after each conversation with my very considerate, empathetic, queer positive, and feminist GP, we would both conclude that the two options available to me for diagnosis—not for treatment—were hormonal birth control or laparoscopic investigative surgery. Neither option ever seemed worth the trouble, as the disease is, still, without a cure, and both unnecessary surgery and hormonal birth control could cause more damage than good. However, after coping with symptoms and chronic pain for another eight years, a recent influx of pain caused me to seek more concerted help.
I requested a new gynecologist, who expressed an interest in reducing my menstrual and PMS pain. Our shared desire for a diagnosis led me down a five-month path of increased distress and illness caused by a range of traumatic diagnostic tests, including: half a dozen trans-vaginal ultrasounds; multiple blood tests; a hysteroscopy where local anesthetic was withheld; the flushing of my fallopian tubes; hormone therapy yo-yoing; the excruciating pain associated with the insertion, rejection, migration, and removal of a Mirena IUD; and finally, because she was out of diagnostic options, a referral to an endometriosis specialist. I thought that after all of those preliminary tests, I would finally find an answer and treatment with the specialist; I was terribly wrong.
Failing to see any “evidence” of endometriosis during the uncomfortable pelvic exam this specialist performed, his prognosis was two-fold: he insisted that anxiety was causing my pain receptors to be out of whack, arguing that my first priority was to treat my actual “disease”—what he described as my anxiety—through his referral to a psychiatrist. His second recommendation was a three-month course of Lupron Depot, effectively inducing menopause by depriving my body of estrogen to determine whether an excess of estrogen caused my symptoms. He then recommended the reinsertion of an IUD, despite my insistence that it had wreaked havoc on my uterus a month prior. Distressed and confused, I did a quick Google search while I waited for my prescription. It yielded a terrifying warning: Lupron was originally patented as a prostate cancer drug in the 1980s, should never be prescribed for undiagnosed vaginal bleeding, and has a horrible record of inducing health issues and causing death to women prescribed it for endometriosis. Minutes later, I reported this to the medical intern and asserted that I would not take the Lupron, to which she responded, “Well, we can’t force you to take it. I wouldn’t say you’re kicked out of the clinic, but until you are trying to have a baby, there is nothing else we can do for you.” I left the three-hour appointment feeling manipulated and violated. It was only later that the pieces of what had happened during that appointment slowly began to come together.
Not only was this endometriosis specialist’s quasi-knowledge of my mental health a misrepresentation drawn from a brief medical questionnaire and potentially a review of files from my distant past, but his prejudices and misogyny also obscured his ability to take my physical health issues seriously. It also completely delegitimized all of the work I do, everyday, including the support systems I have built, to deal with the effects of my anxiety. He attributed my health issues to “women’s problems” and therefore to “emotional problems,” effectively diagnosing me with hysteria. Instead of listening to my knowledge of my own body, he chose to prescribe me a cocktail of two drugs designed for the treatment of cancer. He did this to check off another diagnostic box, not to provide a course of healing, to alleviate pain, or to improve my quality of life. His recommendation of Lupron is deeply disturbing, knowing that it has caused death, disability, and debilitating effects on those with symptoms of endometriosis who have been subjected to it.
I am not writing this piece in criticism of or in opposition to those who may have found treatment and pain relief in the diagnosis of endometriosis; rather, I am encouraged by these stories, some of which come from my own community and family. At the same time, I am concerned about both the growing incidence of people experiencing undiagnosed/undiagnosable chronic pelvic pain, and the history of the medical establishment’s methods of mis/diagnosing women. My main concern is that the diagnosis of “endometriosis” for many simply means more uncertainty: the name of a disease, but no clear treatment options. Currently, endometriosis appears to be a blanket diagnosis for chronic pelvic pain, with contradictory symptoms depending on who is describing it. In the same way that the birth control pill is the first go-to strategy prescribed to treat any reproductive health concern in increasingly younger women—from not getting their periods, having painful periods, having break-through bleeding, etc.—the medical discourse about endometriosis is vague, contradictory, and overwhelmingly ambiguous.
Moreover, these recent figures suggesting that approximately 10 percent of women suffer from this incurable disease should raise a multitude of red flags, some of which I will attempt to unpack here. The first is physical; is it really possible that one in ten women are experiencing the same kind of untreatable pain? Given the range of symptoms women experience that get labeled as endometriosis, a discerning reader might wonder how such complex physical symptoms are all being collated together under one condition. This diverse range of symptoms might suggest instead that some women are increasingly (if this is indeed the case) experiencing a plethora of discomfort and pain from multiple sites within their reproductive organs: the ovaries, the fallopian tubes, the uterus, the cervix, the vagina, the rectum, the colon, and the intestines. That this pain—and its attendant symptoms—is so disparate suggests that the internal conditions of female assigned reproductive systems might require distinct diagnoses and therefore dissimilar treatments.
If pain is the issue, why aren’t stronger painkillers being prescribed to women? It seems that as participants in the war on drugs, the health care system, and the pharmaceutical industrial complex have achieved a happy marriage; prohibitions on the use of narcotics for pain are bolstered by the over-prescription of patented, re-branded drugs that create new health issues in a dizzying circuit of profit for the pharmaceutical industry and medical practitioners.
I have come to believe that endometriosis is not untreatable—many people testify that they have found relief through surgical interventions, among them those geared towards assisted fertility. However, I also believe that endometriosis can be a smoke screen for the lack of knowledge of female reproductive organs expressed by the medical industrial complex—a result of a paucity of sustained research into women’s bodies. This dearth of knowledge is a symptom of a failure of the medical industry to be concerned about women’s bodies for the sake of women’s health alone. Women’s reproductive health concerns are responded to with the utmost concern when the potential for reproduction is at stake. When infertility is considered the most important symptom of the disease, the hypothetical future life of a child eclipses the quality of life of women as patients, as treatments for infertility are sought in exchange for treatments for endometriosis.
While I wasn’t able to advocate for myself in that doctor-patient dynamic weeks ago, I have tried to articulate my experience here as a warning to others. It is scary to have an illness that drains energy from your life and causes chronic symptoms of pain and fatigue, but it scarier still to seek a diagnosis within a system that sees your quality of life as secondary, your body as a testing ground, and your own embodied knowledge as insignificant. As much as I want to find relief from this chronic pain that others have called endometriosis, at this point I feel an even greater need to protect myself from the collusion between representatives of the Canadian health care system and pharmaceutical companies. Still without diagnosis or treatment, and still experiencing pain, mine is one of many cautionary tales of the dangerous power imbalances inherent in a system that claims to have women’s best interests in mind.
Emma M. is a PhD Candidate in feminist studies.
Image: Endometriosis in Wall of Fallopian Tube
Hi Emma- I would like to share with you a thought re another term – interstial cystitis ” which presents with many of your same symptoms and is wonderfully treatable with a herbal extract called Chimaphilla Umbellata. As well – there are many non invasive ways of dealing with estrogen dominance such as Estrosense or Estro smart which work to clean the liver and process and assist the body to detoxify the excessive hormone levels. You can pm me re info on fb at thegreatvine. Best of care and wellness to you. Catherine
Thank you for writing this. I have had a very similar path. Endo and Interstitial Cystitis have both been diagnosed through diagnostic surgery, but I don’t feel like either of those are helpful diagnoses for me, and my pain is still not prescribed pain meds unless I go to the ER. More pain than I can handle but apparently Ibuprofin is all I get. 10 years of pelvic pain, TONS of ER visits, tons of 7-minute Doctor interactions, TONS of transvaginal ultrasounds, and the doctors still say, hmmm…. Have you tried Ibuprofin? That or LUPRON!! Why are those my choices, that seems crazy!!
Luckily, I do feel better than I was a few years ago, but I found help through the alternative and complimentary medicine community. There is a much stronger focus on the Doctor patient relationship, and I have had a much easier time advocating for my needs. If anyone has the financial access to do so, I think a registered/ liscenced Naturopathic Doctor could be helpful.
For full disclosure, I now go to school for Naturopathic medicine because of my experiences.