Social Endometriosis

This is the first summer in 13 years that I have worn a true, 2-piece bathing suit to the Beach or Pool.  I stopped wearing them in 1999 because the bikini allowed my scars to show – the scars I did not have an active hand in marking my body.  In the years since the first visible scar on my abdomen was created, I have systematically matched the unwanted scars not of my hand with tattoos which I actively participate in both the design ideas and execution.  The psychological effect of this intentional and ritualistic scarring is that people now have a legitimate reason to stare – or at least that’s how it goes in my Endometriosis muddled brain.

Over the past 2 years, I have managed to return to the 180lb frame I had in my 20’s minus the physical strength.  It has only been this summer that I dared to break out the bikini on a size 12 figure.  So far, after nearly 3 months of the new bikini, I have not had any strange looks or weird vibes.  As a result, my confidence in returning to the 2-pice has been growing steadily.

Last week, a woman slightly younger than me was at the pool with her 2 young boys.  She was in a modest 1 piece and was still carrying her “baby weight”.  You could still see remnants of the Single Girl deep inside the Young Mother.  While I was sitting on my lounger watching the poolside activities, she smiled and made eye contact several times.

When I finally stood up and went to put my legs in the pool she started to stare.  I watched as her surprised stare morphed into shock and then confusion from across the pool.  It was apparent from her initial surprised stare that she recognized the C-Section scar running from Navel to Pubic bone, but it was clear from my lack of obvious lack “child centric” conversation, or rather the monosyllabic socially acceptable replies to the exchange, that I was childless.  Her shock stare came when the realization that a scar like mine on a woman like me with no children looks, well, it looks serious.

I realized when I dove in the water in my 2-piece suit that the confusion she had in her star was that I had the courage and confidence not to care who saw my scars.  In all honesty, she is right.  One of the most helpful and healing things I ever did was to mark my own body with my own scars – my tattoos.  Each one is directly tied to a specific Endometriosis Surgery and resulting scar on my abdomen.  In 2005, I finished my last Endometriosis tattoo by completing the roses across my lower back surrounding the sigil at the base of my spine.  The only non-Endometriosis tattoo I have is one which marked 2 years in a new Endo-free life in 2009.

For nearly 20 years, Endometriosis has dominated and driven my life choices.  It has affected everything from my professional life to my personal choices, it has even had an impact on my self-confidence. In the modern era of Pro Choice and the freedom of women to live as they choose, how they choose, I have been denied choices and forced into decisions that I did not and do not agree.  I have had to sit back and swallow the bile associated with supporting NARAL and Planned Parenthood politically & socially in the pitiful hope that legislation and socialization will bring the advancements necessary to reverse or cure Endometriosis.  I say that as a formerly fierce advocate and warrior for Women’s Equality.  As I graduated from High School, navigated the US Air Force, and settled into the civilian life of a private US Citizen, I supported Pro Choice groups beginning with NOW.  When I was diagnosed with Endometriosis in 1988, I knew my life depended upon Pro Choice groups to legislate

Birth Control, the pinnacle of the Pro Choice movement, is the first and only line of defense against early stages of Endometriosis.  The target audience for the social debate is 13-30, from the beginning of menses well into ripe child bearing years for American Women in the modern era.  However, because of the religious and political stigma of Birth Control, many physicians on the front lines of Women’s Health, delay treatment for Endometriosis much longer than needed, often times misdiagnosing Dysmenorrhea.  For those physician’s who do with diagnose Endometriosis early fall back on the one-size-fits all low-dose birth control prescriptions for fear they may be fostering the pro-abortion groups.  They avoid the testing required to determine the type of hormone balance the individual patient actually requires for fear of back lash from the Health Insurance Industry.  The end result is 7-10 years for diagnosis, and the unnecessary loss of fertility in otherwise healthy women.  For the lucky few, the birth control for Endo prescription results in 30%-40% weight gain.  By the time we are in our mid-30’s, the hormones make the 2-piece bikini a formidable opponent, not to mention any scars we may have picked up along the way.

As I thought about the Young Mother and her double hit of wonder over my bikini and my scars, I realized how interconnected the Pro Choice and Pro Life groups truly are.  With Endometriosis in the middle of the two factions, and both groups refusing to budge in their political and social messages, they will continue to fail as more of us, the “Endo in the Middle”, regain our health and begin to fight for a cure for the next generation.  Seeing a cure within our lifetime would be a very nice thing.

As advancement in research for Endometriosis, such as the use of Stem Cells to preserve fertility, become published and accepted, the Pro Life groups will lose their allies in the Middle, as we begin to solidify our voice for true Reproductive Health Care Reform.  When we, the Endo in the Middle, balance our hormones effectively and we pull on our 2-piece bikinis, we will be a force that the Conservative Christians and the Pro Life groups need to reckon with.  It is Endometriosis and the lack of support from Pro Life groups that will be their own demise.  In the end, the GOP Female Candidates for Political Office, including the Presidency, will carry with them the stigma of being a traitor to their gender and ignoring the plight of their infertile American Sisters by supporting Legislation and Social Policy which inhibits advancements in Gynecological Health Care because of the research’s proximity to any procedure which could ever be potentially related to Abortion.

Imagine what might happen if, over the summer thousands or even millions of Endo Women make peace with their Endo-riddled bodies, pull on the 2-piece and head to the pool.  I would like to think both sides of the Women’s health care debate would wake up and make real, demonstrable changes to the state of women’s gynecological health.  If for no other reason than to protect their own Daughters.


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