There has been so much misinformation and hurt these past couple of weeks within the endometriosis community regarding a certain blog post written by a holistic health coach about what she believes to be the emotional causes of endometriosis. I feel the need to shed some light on the truth and share my thoughts on this article.
The blog post in question was initially published on the natural wellness blog MindBodyGreen, but was eventually removed due to the onslaught of complaints regarding the misinformation, offensive untruths and dismissive tone it contained. Thank you MindBodyGreen for listening to your readers and community and doing the right thing. It has not gone unnoticed or unappreciated. Unfortunately the author then posted a slightly altered version of the article on her site, again inciting the same negative response. Interestingly, she has been conspicuously absent to respond or address any of the many valid questions and concerns put forth.
Ms Griffin, as a holistic health professional, a woman who has endometriosis myself, and a passionate and vocal advocate for women’s health the article in question is a reprehensible disservice to women’s health bordering on misogyny. The article in question is a work of creative fiction based solely on speculation without a shred of scientific evidence that reduces a serious and painful disease down to modern-day hysteria. You have succeeded in blaming and shaming every single endometriosis patient as bringing this terrible physical disease on themselves. This, Ms. Griffin, is absolutely unacceptable.
Endometriosis is an exceedingly painful disease; one that can strip away women’s quality of life, career aspirations, relationships, fertility and dreams. We suffer for an average of 7-11 years before obtaining an accurate diagnosis, all the while being told by the medical establishment and the world that our pain is “normal”, psychosomatic; that we are “attention seeking”, “rejecting our femininity” or even have penis envy. We are all too familiar with the sigh, eye roll, and a prescription for ibuprofen, birth control pills and antidepressants. We’re told to “take it easy” along with a patronizing pat on the knee.
In the midst of a cyst rupture or another pain-crisis, we are forced to go to the emergency room. We are often mislabeled as “drug seekers” or prescribed unwarranted antibiotics for “pelvic inflammatory disease” for an assumed STD we do not have. On one occasion in the ER prior to my diagnosis my treating physician told me to “find a new hobby, and you will forget all about any menstrual discomfort.” This kind of visceral dismissal of gynecological pain is unfortunately the standing attitude in our society. It is easier for them to entertain the notion that we are over-dramatic or mentally ill than it is to acknowledge the presence of real physical pain resulting from a real, physical disease.
For years we suffer in silence. Often we begin to believe that there is something wrong with us as a person, not that there is a legitimate physical disease present with effective treatment that remains undiagnosed. Your article perpetuates the beliefs that prevent girls and women from accessing the timely and specialized medical care they need and deserve.
Even once we receive an accurate diagnosis (which requires surgery and ideally biopsy), we are often subjected to numerous treatments based on outdated theories of the disease with little to no success. It is not uncommon for endometriosis patients to undergo five, ten or more laparoscopic ablations with little or no relief. We are prescribed strong hormones with serious and sometimes permanently disabling side effects; which at best are only short term band-aid solutions for the pain. Infertility is very common and compounds the profound sense of loss and despair so frequently experienced within the endometriosis community.
Eventually many of us end up getting a hysterectomy, often with the removal of the tubes and ovaries at the same time; plunging us into an immediate premature surgical menopause. To add insult to injury, many continue to have debilitating pain following hysterectomy and bilateral salping-oophorectomy (removal of both fallopian tubes and ovaries) because their endometriosis was not removed. Why is it acceptable to remove organs and leave the disease in place?
Ms. Griffin states:
“It is estimated that to some extent, almost all women are born with the endometriosis lesions…”
This is in fact untrue. Endometriosis affects an estimated 10% of girls and women (and yes, even a few men and an eighteen month old girl.) This has also been well-documented in the literature. Necropsy of human female fetuses have found pathologically confirmed endometriosis in between 9-11% of the fetuses studied. It is believed that endometriosis develops between the sixth and seventh week of embryonic life, long before any potential “emotional conflicts”, abuse or traumas. Combined with the clear patterning of disease and the fact that it rarely returns when completely excised, it is very clear that Sampson’s theory of retrograde menstruation and psychological trauma/emotional instability are not the cause of endometriosis.
“The womb is the center of our creative being and the heart of our womanhood. Out of our womb we give birth to babies, businesses, ideas, and dreams. It is a sacred space in the body of a woman, and one we take for granted until that endometrial tissue starts to turn up elsewhere.”
Possessing a uterus is not what makes us women or the powerful, intelligent, creative and worthy human beings we are. It does not define our femininity. Let me be absolutely clear: women who have lost some or all of their reproductive organs for any reason or struggle with infertility are unequivocally not one bit less of a woman, less creative, less feminine, or less worthy as human beings. To suggest this is extremely offensive. I am absolutely appalled that you would make such presumptuous, baseless assumptions. Nor is endometriosis a result of taking one’s uterus for granted. Please refer to the the comments above as to the actual processes that are believed to cause the disease.
“…endometriosis lesions grow, waver, and bleed alongside the hormonal [fluctuations] of a woman’s menstrual cycle… Her body has developed antibodies against her own tissue. Essentially, her body is attacking itself from the inside.”
Endometriosis lesions do not respond predictably to hormones. In fact they can make their own hormones independent of whether or not the ovaries are functioning or even present. Nor do endometriosis lesions bleed; remember it is not identical tissue to normal endometrium. Endometriosis is not an autoimmune disease, nor is it a subconscious masochistic inner attack on one’s self. It is important to remember that autoimmunity is the immune system attacking the organism’s own normal, healthy tissue; not of elevated immune activity or inflammatory chemicals localized around abnormal tissue. This is to be expected around any kind of abnormal, non-self “invader”, be it an infection, cancer, endometriosis or a whole host of other abnormal circumstances. These are two completely different concepts that are often confused.
“But endometriosis can be a message alerting her to the wisdom of her own inner paradoxes. That she is no longer centered in the wisdom of her womb. She tries to be here, there, and everywhere all at the same time, and her body tries to do the same. She take on conflicting emotions, forcing her life and body to rage a constant battle with one another other. In other words, her mind conflicts with her heart… Often called ‘an illness of competition,'”
Endometriosis is not a disease of confused, over-competitive, unbalanced women who are incapable of coping with the demands of modern life. I can assure you that it is not a disease of inner conflict; in fact as a group we are incredible strong, intelligent people who are fighting to get well. I myself and most others with endometriosis do not experience any conflicts between our heads and our hearts and assuredly are quite sane.
“The Dependent: For some women, the paradox arises as the need to be both independent and dependent at the same time. She struggles to “grow up,” desiring the comfort of home and the nurturing of a loving parent. She clings to her childhood and eschews the duties of adulthood including moving out, getting married, or having a baby. On some level she sees her own mothering qualities as being outside of herself (and thus her endometriosis is outside her womb). To her, she is not a mother (whether physically, or emotionally). She is dependent on her parents’ ability to provide, nurture, and care for herself, and while she may say she wants independence, she often doesn’t feel it.”
This projection you cast on us as being emotionally immature, fragile and unable to care for ourselves or others is patronizing. In my experience women with endometriosis are incredibly strong individuals. We become experts of our disease and fiercely advocate for not only ourselves but for the best interests, health and education of others in our very large community. We fight doctors who don’t listen and insurance companies for effective treatment. We fight intentionally misleading “awareness” campaigns and drug companies. We fight for awareness, respect and understanding.
It isn’t easy speaking publicly about such a culturally taboo disease with progress limited by archaic beliefs within the medical establishment and the lay public. It isn’t something that is comfortable. But it is something we do. These are not the actions of dependent, clingy, child-like women without a strong sense of personal conviction or direction. These are actions of those possessing profound internal strength.
“The Business Woman: For other women, the paradox arises as a need to both work, and not work. She loves to do well in business, earning a solid living for herself and establishing her independence, but she’s faced with the conflicting emotion of also wanting to stay at home, be a homemaker, be with her children, or follow her dreams. She clings to the security, power, and money associated with her day job, but deep down she’s not satisfied with this existence… Rather than looking to herself, and what she truly wants out of life, she pursues happiness and success outside herself, and thus her womb seeks the same.”
Although endometriosis has often been mislabeled a “career woman’s disease” in the past, this again is a myth. In the past, it was common for “career women” to be diagnosed with and treated for the disease, but not because it is a pathology exclusive to them. They simply had access to the financial, medical, educational and insurance resources and pushed for a diagnosis, things that unfortunately all too often are out of reach for lower-income and under-insured women. This is a serious social problem.
While I am an ambitious, driven, person passionate about my purpose and career of inspiring women around the world to nourish themselves sexy and live their best, happiest and healthiest lives possible, I can’t imagine life any other way. I absolutely love what I do. I have the honor and privilege of working with the most incredible and inspiring clients every single day and am so grateful to have the opportunity to make the world a better, healthier place. This is my calling. I also am blessed with a wonderful personal life, filled with amazing family and friends. I am living my passion. I am not at all unsatisfied with my existence or stifling my dreams. Nonetheless, I still have endometriosis.
To suggest that those of us with careers outside of the home are stuck in unfulfilling jobs that are merely a superficial and insecure veneer hiding our true desires is degrading to women everywhere. The wonderful thing about living in the 21st century is that we have the choice of any career path we want. We can choose to run a company, be the CEO of our homes and families or anything in between and we can do it all in cute shoes. All are equally meaningful options offering important contributions to society. The choice is ours, and this is a beautiful thing.
“The Reluctant Mother: Still other women with endometriosis struggle to accept whether or not she wants kids. On a logical level, she’s reached a certain age, has crossed off a certain number of check boxes, and having children seems the obvious next step. She often starts trying to conceive without ever truly evaluating if kids are for her. Why should she not want kids? It’s only natural!! But deep down, this woman may be trying to accept motherhood where she doesn’t want to accept it.”
Out of all of these baseless metaphorical assumptions and projections, this one is by far the most hurtful. Approximately 40% of women with endometriosis struggle with infertility. These women desperately want a child, but cannot conceive or experience recurrent miscarriages due to pelvic inflammation, scar tissue, distorted pelvic anatomy and ovaries ravaged by endometriomata, drug therapies and surgeries. Some are lucky and are able to conceive following effective excision surgery or assisted reproductive procedures, but for many it is too late. Some pursue a family through adoption, which can be a very expensive, prolonged and difficult process without any guarantee of a child.
To suggest that these women are doing this to themselves on a subconscious level is deplorable. I think most of all you owe these women a sincere public apology and retraction of your article.
“And by realigning her life to the wisdom of her womb, she can find healing, comfort, and yes, ease from the pain.”
Let me be clear that I absolutely advocate a comprehensive, integrative approach to healthcare; regardless of the disease or condition present. Specifically regarding endometriosis, a combination of expert excision surgery, personalized nutrition, pelvic floor physical therapy, acupuncture, meditation and targeted supplementation can be extremely effective in improving the quality of our lives. I myself have found that dietary therapy has been essential in managing my pain, as have my clients. Stress; regardless of the source can absolutely make pain and other symptoms much more difficult to manage and can slow healing post-procedures. No one is contesting that.
But the bottom line is that endometriosis is a serious physical disease, with physical causes that destroys lives and can have potentially very serious complications. It is not caused by any emotional, constitutional or mental deficits, and it cannot be cured by “reconnecting” with one’s uterus (if they still have one), therapy or changing your personality. It is also worth noting that ovarian cysts cannot be treated by eating chocolate chip cookies, as you gleefully suggest in a different article on your site.
For all of these reasons I implore you to please remove your article from your site and stop writing or speaking about endometriosis (and other women’s health issues) until you have educated yourself on the scientific facts of this disease. As it stands, your article is setting our progress back and disseminating inaccurate information and dangerous myths of hopelessness and blame. It actively prevents women from getting the effective and timely expert medical care they need and has disastrous consequences on the health of women and girls everywhere.
The article marginalizes a group of women who already are fighting stigma and are not taken seriously on a daily basis. It invalidates the suffering and experiences of millions of women and girls worldwide; reducing our pain and infertility down to hysteria that can simply be wished away. I can’t imagine you getting away with posting similar sentiments about the psychosomatic “causes” of breast cancer, diabetes, malaria or asthma.
I believe that as women it is our duty to advocate for each other and work together in order to improve our health, global equality, happiness and individual personal potentials. We are only hurting ourselves when we dismiss and minimize the pain and suffering of one another and ignore medical facts.
We have the power to transform the world in a very positive way, but only if together we all raise our voices in unison for the greatest good of us all.
“When sleeping women wake, mountains move.” ~Chinese proverb
How did the article in question impact you? Have you experienced dismissal of your symptoms and/or diagnosis (such as pushing the outdated emotional causes of endometriosis myth) by a health professional, coach or others in your life? Please let us know on Facebook and in the comments below- we love hearing from you!
For more information about endometriosis and effective treatment, please check out these excellent, accurate, science-based sites that are not sponsored by the pharmaceutical industry: