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The Traitor Within: A call for reproductive health

Women across the nation – and the world – are fighting an epidemic of reproductive ills. From fibroids and dermoids to polycystic ovarian syndrome and endometriosis, women’s reproductive systems are sabotaging our health. Women suffer daily, and countless children – wanted, desired, strived for – never come to fruition in this world of unwell. This nation spends so much time spinning around in circles talking about why more women aren’t having babies: blaming abortions, a lapse in morals, the rise of feminism – but there is something deeper, far more insidious at play. Beyond fertility, these ills threaten the health of countless women, and those women deserve more attention and options than are available to them today.

Any number of hypotheses could be ventured: are these conditions genetic? Environmental? I have my own theories, but there are others far more qualified than me to provide answers. If those qualified had the right support. But the awareness and research of these problems is falling far short of what we need.

Why – if we are so focused on family; so focused on life – are we not spending more time researching and investigating cures and treatments for these life-altering conditions? And if the promise of life isn’t enough to urge us to action, why not then the promise of reduced suffering in women who suffer from these conditions? The suffering of these women is true and ruinous regardless of whether or not they would have chosen to bear children. Their rights as human beings, to pursue their potential without undue suffering, remain constant despite current or future choices. Life must be honored both in the future and the present.

Beyond any cure, even awareness is shockingly low – these potential issues are rarely part of our health education systems. As young women, my generation was never instructed about cysts, endometriosis, fibroids, or other potential maladies, nor how to spot them. The symptoms for which one should visit a gynecologist were completely absent from standard education; the word gynecologist only uttered in hushed tones, like one might evoke an executioner or an exterminator. Dark magic lay there, and as adult women we are left to Google symptoms in hopes of finding solace in science. These educational problems are easily remedied, and would at least empower women to have more informed conversations with doctors, fighting years of misinformation.

My own journey brought 9 scars. A 6-inch laparotomy scar, from my first dermoid removal at 26. It was 10cm, 500cc, the size of a grapefruit. My left ovary was permanently reduced in size due to the removal, and I always wondered if my fertility was already a hypothetical construct. That experience opened up a whole new world to me: dozens of “cysters”, who may have thought they were also alone, who had their own encounters with fibroids, with polycystic ovaries, with endometriomas, with dermoids; or worse, tumors. Why had no one warned us our reproductive systems were so murderous?

My next 3 scars were from an exploratory laparotomy, to check on a follow-up cyst that recurred a few years later. My final 5 scars may actually be more, as they were accessed twice and my bandages are still in place; the mark of two successive robotic laparoscopies over 5 months in 2017. The first attempted a conservative cystectomy only, reducing the size of both ovaries removing masses from both (but primarily, a 5cm dermoid that contained a formed trachea from my right ovary.) But scarring, inflammation, and yet another cyst led to my final hysterectomy-bilateral-saphlingo-oophrectomy 12 years later, just a few weeks ago.

600,000 women every year – of which I am now one – undergo a hysterectomy in the US. Many of us are essentially forced to choose sterilization because medicine has fallen short. When birth control pills fail to control symptoms (and yes, they should be called hormonal treatments as their uses go far beyond birth control), few other treatments are available aside from our coarse-grained surgical options. Cut the woman open, remove the disease, hope it doesn’t return. Over time, in many cases, her body can’t keep up with the trauma, and the procedures are rendered final. In my case, the cystectomies and related scarring led my ovaries to spend every subsequent month generating hemorrhagic cysts, causing me to bleed into my abdomen at each ovulation. Another end to fertility in a society that claims to value it so highly.

This “final” option – the total hysterectomy, including ovaries, cervix, and fallopian tubes – is life-altering (though not every case requires it, and even that awareness is lacking in the broader medical community.) What other procedure removes 5+ organs and portends to return a human to normal operating procedure? It’s not even final for women with endometriosis; I know first-hand of women who have gone through this ultimate gauntlet only to STILL see a recurrence in symptoms.

Through all this, I was LUCKY. Lucky to have doctors who took my pain seriously. Who ordered the tests that exposed my cysts each time, rather than waving me away. Who honored my decision for an early intervention this third time around, rather than another year of watching and waiting that could lead to more difficult procedures at the end of another painful journey. Some women go years with their symptoms ignored, or written off as cyclical. And don’t write these women off with “oh, they should see another doctor” – have you ever tried to find a surgically experienced gynecologist, much less more than one? The wait can be months, and that’s if you have the insurance to cast a wide net. As Planned Parenthood is defunded, the choices dwindle for many women. My doctors did the best they could with the treatments and knowledge available. It is the body of knowledge that is lacking.

And yet, I am surrounded by strong women who have been through this greatest sacrifice, with and without children. A vast network of women who have chosen (or been told) to be hollowed for a chance at a better existence, an existence free of chronic pain and myriad other disruptive symptoms. And they still thrive: because women forged in suffering suddenly set free from pain are prepared for success in life like few others can ever hope to be, even if that success is bittersweet.

Still, all of this is to say nothing of the many reproductive cancers we face. Ovarian cancer is particularly deadly, but other cancers lurk too. Better understanding of other reproductive conditions could help rule out false positives and false negatives, leading to better early detection when a woman’s life is mortally in danger.

Any claim to honor life, or to value motherhood, or to value women, must come with a greater focus on reproductive health for all women. Long before childbirth. On real research behind the causes and mechanics behind the conditions sterilizing so many otherwise healthy women. We will no longer be written off as the hysterical, as the vapor-addled, as the waifish supplicants. We have been fighting against pain our entire lives, and we demand that pain be addressed, for the good of our present and future generations.

Recovering in the hospital after my 4th and final reproductive surgery – this month’s total abdominal hysterectomy to address a lifetime of problems.

It is too late for me. The door has closed on my 12-year journey: my reproductive system gone, fertility permanently relegated to the realm of the theoretical, and several decades of hormone replacement in my future. But if there’s anything I’ve learned from my own suffering, it is that it only becomes meaningless if it is allowed to drift silently into the past.

To my fellow women warriors: honor your pain. Seek treatment. We have been trained to put up with so much, to our own detriment. If you have the resources, please seek treatment for regular reproductive pain of any kind.

To the men out there: please honor and support the choices of the women in your life. If they are in pain, encourage them to seek medical advice. If they must make difficult decisions, support those decisions. If their doctors won’t listen or honor their symptoms, support them in finding someone who will.

And to both sides: please fund efforts to research these many reproductive malfunctions, so that we can find less invasive treatments and cures. For those without access to care, fight for their human right to treatment and preventative care.

Reproductive health is not recreational medicine. To do no harm, medicine must do better by the women of my generation… and beyond. Let us all work to do better by the women in the world in 2018, for the benefit of all humankind.