On Thursday 8 March 2018, International Women’s Day [IWD] was celebrated.  The theme: Time is now: Rural and urban activist transforming women’s lives.  In almost every pocket of the world, some degree of celebration in observance of IWD occurred. Amazingly, the endometriosis woman was no different; she joined the IWD movement for women’s rights, equality and justice.  She participated in social media #metoo and #timesup campaigns.  Perhaps, the fact that March is recognised as Endometriosis Awareness Month in a number of countries around the world is no co-incidence, especially since the disease endometriosis has the potential to etch away at the very core of womanhood, if she, the endometriosis woman permits it.  Therein lies the question, who is the endometriosis woman?

 

The term endometriosis, according to endometriosis.org, “is a condition where tissue similar to the lining of the uterus (the endometrial stroma and glands, which should only be located inside the uterus) is found elsewhere.”  Approximately, one out of every ten women is afflicted with the disease during their reproductive years and some experts think the incidence is much greater. Further, the World Endometriosis Research Foundation [WERF] states “Endometriosis can start as early as a girl’s first period and menopause may not resolve the symptoms of the disease, especially if the woman has scar tissue or adhesions from the disease and or surgery.”  Applying within the context of Trinidad and Tobago, this may mean that each individual encounters the endometriosis woman on a daily basis; and interestingly enough, the disease is still largely unheard of.  Yet, perhaps the most popularly known aspects of the disease are infertility and painful periods, two very taboo topics. These could be contributory factors for the mass majority not knowing of endometriosis.

 

 Although the endometriosis experience varies from one woman to another, there still exists a common misconception that all women with endometriosis are infertile. As a consequence, the endometriosis woman is stigmatised and within some circles even ridiculed.  The fact of the matter is not all women with endometriosis are infertile.   There are many women who were able to conceive and gave birth to children.  In fact, research has shown that only 30% to 40% of women with endometriosis may not be able to have children.  If she is experiencing infertility, the proliferation in awareness and advocacy for early diagnosis coupled with the advancement in medicine and reproductive technologies have increased opportunities and options with improved outcomes for her.  If in spite of her best efforts, she is still unable to reproduce, is there really a need to stigmatise, ridicule or perceive her as a lesser woman?  Often times, the personal burden of such a reality need not to be compounded by any external factors whatsoever.  Surely, one can understand why many women with the disease are reluctant to discuss it openly.  The downside, however, is that the absence of open discussion equates the absence of awareness which in turn will stagnate the much improved health outcomes for the endometriosis woman.

 

Similarly, painful periods are usually the most popular synonyms used to describe endometriosis

giving credibility to the age old theory, retrograde menstruation thereby simplifying this enigmatic disease. When asked the question, from your experience treating endometriosis, where does it commonly occur?  Please describe.   In his 20 plus years of treating endometriosis, Dr. Brian Brady stated that endometriosis is most prevalent within the pelvis and abdomen and the commonly affected areas are the ovary, the peritoneum which lines the pelvis and abdomen, tubes, the area behind the womb and in severe cases the bowel.   Further he expounds, “However, I have dealt with cases where the disease is distant to the pelvis in scar tissue, the umbilicus and diaphragm close to the lungs.”  By so stating, Dr. Brady, vindicates the endometriosis woman; because admittedly, describing endometriosis as painful period and then finding it on and in structures distant to the pelvis raises questions.

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Furthermore, Dr. Brady refutes the theory of retrograde menstruation. He added, “Interestingly, this refutes the older theory of retrograde menstruation underlying the disease and we now understand this is a much more complex process involving genetics, inflammation and the immune system.”  Simply put, the theory of retrograde menstruation was proposed eons ago by Dr. John Sampson who purported endometriosis is as a result of the backflow of the monthly shedding of the lining of uterus through the fallopian tubes and into the pelvic cavity (endopaedia.info).  Because many are unfamiliar with the term endometriosis, painful period is used and admittedly it is an excellent way to introduce the conversation, taking one from the known, painful periods to the unknown, endometriosis.  Invariably, under no circumstance, should one be left thinking endometriosis is painful period.  To do so will only trivialize the disease and the experience of the endometriosis woman and contribute to inaccurate information.

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The symptoms of the disease are wide-ranging and so the endometriosis woman may experience much more than infertility and painful periods.  Pain seems to be very commonly experienced by most women afflicted by endometriosis: painful period, painful sex, painful urination, chronic pelvic pain, back pain, leg pain, painful bowel movement, migraines, and the list goes on.  Joleen Meharris, an endometriosis woman, shares briefly her painful experience.  Without acrimony, Joleen states, “Chronic pain can change your life and I never wanted to become a depressed and angry woman. Despite the pain and suffering, I thank God that my personality did not change and I was able to keep my smile.” More often than not, the endometriosis woman finds herself having to convince others including some medical practitioners of the level of pain she is experiencing.

 

Dr. Brady provides a brief medical explanation for what occurs inside of an endometriosis woman that causes debilitating pain.  He explains, “the endometriosis deposit implants and establishes its own blood and nerve supply. This results in a cascade of complex inflammatory changes, interacting with the female hormone estrogen. Nerve fibres are activated and the woman consequently feel pain.”  He further explains that there is not necessarily a correlation between the stage of the disease and the symptoms experienced, “Endometriosis presents in a very variable manner, often overlapping with other conditions leading to a delay in diagnosis. Whilst patients with deep infiltrating disease are more likely to have severe pain and infertility, often women with minimal disease will have debilitating symptoms. This is reflected in disease staging systems which often do not correlate well to the severity of symptoms and response to endometriosis treatments.”  Her pain is real! 

 

The World Health Organisation [WHO] (2009) states “For many women, the years between puberty and menopause offer multiple opportunities for personal fulfilment and development.  However, this can also be a time of health risks specifically associated with sex and reproduction that may result in a significant burden of mortality or disability.”  This and much more holds true for women with endometriosis because whilst there are some who do not experience any symptoms of the disease and are able to enjoy a ‘normal life’, many are unable to do so as they find themselves grappling with myriad issues.  Emotionally, she can find herself vacillating between emotions; one such emotion is depression. Joleen admitted to this.  In the absence of a proper support structure, she can find herself alone and even lonely as the disease can restrict her socially.  The cost of endometriosis can significantly deplete her financial resources.  Proper endometriosis care is not inexpensive and very burdensome and when coupled with repeated treatments, which in most cases are surgeries, the financial burden increases tenfold.  She can be exhausted from constantly searching and pleading for proper healthcare.   It is no secret that the standard of healthcare offered to the endometriosis woman is far from ideal, especially here in Trinidad and Tobago. “In the ideal situation patients in Trinidad should have access to trained specialists with expertise in minimal access gynaecology with a multi-disciplinary approach to their treatment,” says Dr. Brady.  According to a popular endometriosis advocate, “Endometriosis surgery should be one surgery done right.” 

 

Realistically, while it is difficult to encapsulate every aspect of the endometriosis woman in this article, one can agree that endometriosis has the potential to impact every aspect of the woman.  Within her private sphere, in her many private moments, her greatest struggle is with her own personal movement, living with endometriosis, an incurable and life-interfering disease. Interestingly, however, when the endometriosis woman was posed with the question, does endometriosis define you as woman? Joleen responded, “Funny question. Since my diagnosis, I've always tried for endometriosis not to define who I am... So even though endometriosis affected and often limited my role as a wife and mother, the challenges made our family stronger.”  In like manner Alysia Whittaker replied, “Although endometriosis is a serious disease, it DOESN’T define me as a woman, it just affects me. I, having a painful period and no children, doesn’t make me any less of a woman than any other woman. I’m just a woman who’s suffering with a female related disease.”  Certainly endometriosis does not make her less of a woman but I firmly believe it defines her as a woman. Endometriosis makes her stronger!