Blog of the Society for Menstrual Cycle Research

“If Menstrual Health is the Neglected House on the Block … Then Endometriosis is the Basement”

September 12th, 2013 by Saniya Lee Ghanoui

Guest Post by Heather Guidone, CWC, Surgical Program Director, Center for Endometriosis Care

All photos courtesy of Heather Guidone.

The Center for Endometriosis Care was honored to present at the Society for Menstrual Cycle Research’s 20th Biennial Congress in early June, an event featuring the world’s leading professionals including physicians, nurses, psychologists, sociologists, anthropologists, women’s and gender studies scholars, and many others – not the least of whom was Honoree Gloria Steinem. Tasked with identifying public health challenges and barriers to including menstrual cycle disruption/disorders as key components of women’s health, and explore ways by which to overcome these critical gaps in pelvic health, we tried to drive the point home as to how largely ignored endometriosis is:

“If menstrual health is the neglected house on the block, then endometriosis is the basement.”

We explored and investigated the shortfalls in endometriosis, in that, yes, endometriosis is a disease of menstruation – but it is also true it has far deeper impact on a woman or girl’s life and places a significant public health burden on our society. Endometriosis isn’t merely about painful menses. The disease is a debilitating, costly illness linked to chronic pain, impaired fertility, and significantly reduced quality of life.

Endometriosis affects menstruators and non-menstruators alike (post hysterectomy, post menopause, etc.), and remains fraught by significant diagnostic delays, high treatment failures and consequent recurrence – all of which pose formidable challenges to practitioner and woman alike. Unfortunately, many women and girls are not taught what is ‘normal’ and what may be indicative of a problem; largely, ‘period taboos’ stifle the conversations we should be having about signs and symptoms of the disease.

Moreover, research remains sorely lacking in priority and offers little bench-to-bedside translation; there remains an acute need for coordinated investigation into pathophysiology, precision treatment, association with co-morbid conditions and prevention/cure. Women are too often told the pain is in their head; still others espouse ancient, mythical notions of hysterectomy and pregnancy as cure. None of this is true, and such sentiments are a monumental disservice to those suffering. Sadly, even well-meaning clinicians – not just lay society and the media – remain ignorant of the damaging effects the disease imposes on girl’s and women’s physical well-being, sexual function, fertility and general welfare, creating a vicious cycle of ineffective treatment.

It has been said by some that endometriosis is a disease of the ‘modern age’; that women and girls have brought the disease upon themselves by delaying childbearing in lieu of careers and academic goals. This is completely untrue, as we have seen accounts in the Ebers and Kayun Papyrus’ of what could easily be today translated as endometriosis. There are also rumored cave drawings and Egyptian hieroglyphics depicting uterine pain. As years progressed, we eventually came to a better understanding of endometriosis and the significance of pelvic pain – but this still hasn’t changed society’s view of menstruating women. Menstruation – particularly menstrual pain – remains largely belittled, marginalized, ignored, medicalized and dismissed. It may not be a menstrual hut, but we’re certainly still sending girls away today in the metaphorical sense – away from timely diagnosis and effective intervention for this disease.

Why should we care about painful menstruation? Women bleed, women hurt. Right? Wrong. This disease is not about painful periods. It’s about a debilitating illness that takes tremendous personal and societal toll:

  • Drastically reduced overall quality of life
  • Severely compromised academic/professional opportunities
  • Critically impaired sexual, mental, physical, emotional functionality
  • Negative/far-reaching impact on relationships
  • Significant loss of productivity
  • Erroneous “in your head” diagnoses may lead to emotional/psychosocial issues
  • Dependence/addiction accusations
  • Often unnecessary/ineffective/repeated medical and/or surgical treatments up to and including hysterectomy do little to help, yet contribute to vast and gratuitous healthcare expenditures

The legacy of misinformation is shared widely, from doctors to patients to media, and globally propagated over and over. The incredible bias surrounding menstruation and pelvic pain against women of all races and ages contributes to further delayed diagnoses or mistaken/dismissive diagnoses like STDs, fibroids, “NORMAL PAIN”, etc. Karen Ballard’s landmark paper from 2006 described the stigma given to girls with menstrual pain who were mistakenly believed to simply be unable to ‘handle’ a period.

Still other medical reviews dating back about 4,000 years found evidence of women being subjected to torturous treatments – leeches, bloodletting, hot douches, being hung upside down, and accused of demonic possession and killed – for their inability to overcome intense pelvic pain in their pelvic area – even famed philosopher Plato mentioned the extreme distress that women experienced. What he and others observed and perceived as ‘suffocation of the womb’ may likely have been endometriosis. [Colliver, V. 2012 October. Endometriosis Sufferers Long Blamed. San Francisco Chronicle.]

We haven’t come very far, sadly.

Due to this significant lack of factual awareness, endometriosis remains an undervalued, underappreciated diagnosis. Women and girls with the disease suffer a diagnostic delay on average of 7-12 years and present to 5 or more physicians before their pain is addressed.

Additionally, the disease is constantly mislabeled as ‘routine menstrual pain’, particularly in younger women. In particular, data reflect that general practitioners’ knowledge about endometriosis is limited, with possible direct consequences on the delay of the diagnosis. In survey findings, 63% of general practitioners indicated they felt ill at ease in the diagnosis and follow-up of patients with endometriosis. One-half could not cite three main symptoms of the disease out of dysmenorrhea, dyspareunia, chronic pelvic pain, and infertility. Only 38% of general practitioners indicated that they perform a clinical gynecologic examination for suspected endometriosis, and 28% recommended MRI to confirm the diagnosis. [Ballard K, Lane H, Hudelist G, Banerjee S, Wright J. Can specific pain symptoms help in the diagnosis of endometriosis? A cohort study of women with chronic pelvic pain. Fertil Steril. 2010;94(1):20-27; Giudice L, Evers JLH, Healy DL. Endometriosis: Science and Practice. Chichester, West Sussex: Wiley-Blackwell; 2012; Nnoaham KE, Hummelshoj L, Kennedy SH, et al. Developing symptom-based predictive models of endometriosis as a clinical screening tool: results from a multicenter study. Fertil Steril. 2012;98(3):692-701.e3; Quibel A, Puscasiu L, Marpeau L, Roman H. General practitioners and the challenge of endometriosis screening and care: results of a survey. Gynecol Obstet Fertil. Epub 19 Apr 2012. doi:10.1016/j.gyobfe.2012.02.024]

It is simply not possible to triage women with chronic pelvic pain effectively on history alone; hence, women may benefit from timely referral to specialist centers for careful clinical assessment and appropriate investigation. The gold standard of diagnosis and treatment is laparoscopic examination and excision. In that endometriosis requires a surgical diagnosis, use of biomarkers has recently been described as the highest priority in research due to the continued lack of non-invasive diagnostic means. Lack of nonsurgical markers contributes significantly to the delay in diagnosis and timely intervention, though proteomics and genomics are establishing the basis for future study related to biomarker development. Still, surgical intervention remains the standard.

Physical examination and diagnostic imaging have poor sensitivity, specificity, and predictive value in the diagnosis of endometriosis. When probed, the patient may exhibit pain. A thorough combination of history, physical examination, and laboratory and additional diagnostic studies as indicated must be done to determine the cause of pelvic pain and rule out other non-endometriosis concerns. Unfortunately, adequate testing is often withheld, especially in the younger and older patients – this echoes again the importance healthcare places on optimal fertility vs. quality of life. As a result, many women and girls are often misdiagnosed and/or directed to “manage” the pain for years through repeat, superficial surgeries in which all disease is not removed or use of painkillers and/or medical therapies like oral contraceptives and hormonal injections, but these only mask symptoms and do not treat disease in any way.

Medical suppression therapy’s primary goal is to impede the growth and activity of endometriotic lesions. However, it is largely ineffective and women often find themselves uninformed about side effects and having to choose between evils. This is not patient-centered and certainly not woman-centered healthcare, with little regard to the natural biologic processes of the menstrual cycle and which completely discounts the fact that endometriosis as a disease surpasses ‘normal’ cycles. The high rate of recurrence confirms that medications do not adequately treat the disease and may expose patients to side effects that for some are intolerable with the end result being the same: pain returns. Meds also do not improve fertility. All have similar clinical efficacy in terms of reduction in pain-related symptoms and duration of relief and again, none are curative. Some have side effects that prove to be significantly long lasting and highly negative. Often – patients are not told any of this. We need to create a far more participatory conversation in women’s health.

Patients are also often misled to believe that the only long-term solution is castration – removal of reproductive organs, hysterectomy/salpingo-oophorectomy – a dangerous myth. Though hysterectomy has its place in endometriosis treatment for select cases, the disease is not “cured” by removal of the uterus, ovaries and/or tubes and cervix. This ongoing misconception is responsible for countless, needless hysterectomies performed each year – indeed, nearly half of the 600,000 hysterectomies performed in the United States annually are the result of endometriosis. Similarly, “pregnancy” and/or “menopause” are often touted as curative, but such claims are equally untrue. Many patients will need complex, multidisciplinary surgery combined with adaptation of lifestyle changes.

Living with endometriosis truly exemplifies and embodies the social implications of negative menstrual attitudes. This disease has the propensity and potential to take away so many of a woman’s choices – when and whether to engage in a fruitful, enjoyable sex life with the partner of her choosing, when or if to pursue fertility options, whether or not to undergo invasive procedures, to choose ineffective menstrual suppression and medications which alter her cycle, and so much more. Truly, it is a public health crisis, but it is also a key women’s health initiative needing further promotion, understanding, research, and empathy.

We don’t talk about menstruation in honest and candid terms or in ‘polite’ company, so patient frustration and lack of compliance, significant diagnostic delay, high treatment failures and extremely deficient health literacy among both providers and those affected continue to enshroud the disease. Likewise, endometriosis is often sidetracked by and mired in the fertility aspect – when what we should be focusing on is not procreative potential, but the impact which pain has on a woman or girl’s life and her resulting ability to make and enjoy her own choices – whether sexual or career or socially oriented. Not only do we need to find our voices, we need to change the messages being delivered.

Demand – and stand for – nothing less from your healthcare providers. Put an end to the secrecy, shame and pain: revitalize menstrual communication and key conversations with our sisters, daughters and selves. Endometriosis progress remains hindered by formidable, unmet challenges, not the least of which is the critical need to immediately remove the barriers to care brought about in large part by our culture of menstrual misinformation. In order to overcome this, there must be awareness of the issues and realistic, proactive steps that we can take. In an effort to achieve engagement among the endometriosis community, women and society at large, we need better disease recognition, understanding of its impact and gap needs – and of the high price at which menstrual silence comes.

STOP FAILING THE WOMAN WITH ENDOMETRIOSIS:

  • Alleviate the culture of menstrual misinformation through education and research
  • Reduce delays in diagnosis
  • Address menstrual etiquette/concealment factors and increase disease education, both of which contribute to poor diagnosis and abysmal care
  • Expand fundamental components of effective management and reduction of associated costs by improving access to treatments such as insurance reform, economic barriers, lack of insurance and standardization of care
  • Refer patients to tertiary specialty centers for the expert treatment of the disease to facilitate maximum outcome
  • Endometriosis must become a highly-funded research priority [Hummelshoj 2011]
  • Support a multi-disciplinary approach for improved outcome and reduced costs
  • Education must start in the school setting and across multidisciplinary healthcare provider centers i.e. clinics, Planned Parenthoods, primary care physicians, community health centers, gastroenterologists, urologists, etc. through dissemination of updated, current and authoritative data
  • Stop industry catering and return to a patient-centered approach to healthcare

The conversation about the physical, conceptual and political facets of our disease is limitless – but making a difference starts with us. In our work, in our conversations, in our presence in society at large. We’ve got to start changing things for our daughters of tomorrow if we are ever to see positive shift in the care and treatment of those with this enigmatic disease. It can begin by simply educating the masses on what is normal menses and when to seek help. But above all – “the most important thing when planning a patient’s treatment for endometriosis is to LISTEN TO HER.” [Ken Sinervo, MD, CEC Medical Director]

  

4 Responses to ““If Menstrual Health is the Neglected House on the Block … Then Endometriosis is the Basement””

  1. Laura Wershler says:

    Heather,
    I saw your presentation at the conference, and this piece reinforces the critical importance of your recommendations for moving forward with research on endometriosis and support for women living with this condition. I also appreciate that you contextualize your advocacy within the larger frame of menstrual cycle education. Thank you.

  2. Heather says:

    Dear Laura – many, many thanks for your feedback! I really appreciate it. Looking forward to opportunities to collaborate with you and the SMCR in the future. All my best, Heather

  3. Angie says:

    Dear Heather,
    Thank you so much for educating those who have the potential to help us sufferers of Endometriosis, to feel human in the care that we receive. I believe many of us suffer in silent after realizing just how misunderstood the disease is to many physicians and the public alike. You very quickly feel alone in your struggle. If you have had any kind of sexual trauma/abuse as myself you will go to great lenghts to avoid the shame cast upon you when the battery of tests, questions and even accusations are hurtled at you during ER visits and doctor visits. I have left offices and hospitals with tees welling in my eyes more times than I can count. I have been told to “just get pregnant ” to cure my disease, asked if I have Pelvic Inflammatory Disease (no) and if not then why do I have scar tissue all over my pelvic walls ( he asked me to explain what I meant When I said I have Stage 4 Endometriosis, and I explained everywhere it and the scar tissue was found in my abdomen) and most heartbreaking and difficult of all was when asked if I had been sexually abused because a research study showed that many women with chronic “mysterious” abdominal pain have a history of sexual abuse (I already explained I had Endo) . He then wrote me off with an antidepressant and painkillers. The first clinician was an OBGYN, the other two Emergency Room Doctors. I have undergone 4 laparoscopies, 2 of them emergency surgeries due to complications from scar tissue, done 2 rounds of 6 months of Lupron, been on non stop birth control pills, undergone fertility treatments and made to feel drug seeking when needing help for the severity of my pain. I had been planning to undergo a hystorectomy, at an attempt to get my quality of life reclaimed.
    Anyways, as I said THANK YOU. I will be sharing.
    Sincerely, Angela

    • Heather says:

      Many, many thanks to you, Angela, for your brave commentary. You are not alone in your battle; please know you are understood and validated. Wishing you all the very, very best.

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