How I Became “The Mesh Warrior” and How You Can Too

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For many of us, family members of those implanted with transvaginal mesh, for years now life has been about watching someone we love writhe in unendurable pain and locking eyes with a bottomless suffering we feel helpless to stop. The focus is on our injured loved ones but this, we now know, is a family injury that reaches through them, sprouting tentacles into everyone they love, making its home in all of us.

“Mothers are the backbones of our families,” said one of the many women sometimes called “Mesh Angels” whose own body fights against her every day as it tries to heal from what was described to her by her doctor as a minimally-invasive, outpatient surgery to fix two very common women’s health issues. Her comment struck me as incredibly profound, since even through the blurred and shaky lens of chronic pain, she sees what happens to all of us, when an offender, so neatly packaged inside the proverbial Trojan horse, steals our matriarchs from our arms. The culprit has many names “Transvaginal Mesh,” “Pelvic Mesh,” “Synthetic or Polypropylene Mesh,” it’s still being sold to patients around the world, through their long-established, trusting doctor-patient relationships. Mesh, often presented as the gold standard for the repair of POP (Pelvic Organ Prolapse) and/or SUI (Stress Urinary Incontinence), is still implanted, continuing to cause profound injury and devastating harm to many women worldwide.

Our mothers, aunts, sisters and grandmothers have been directly injured by the negligence of product manufacturers and surgeon’s knives. And we – daughters, nieces, grandchildren, and husbands – have been injured too, by the loss of our most precious family relationships, and we are all wondering:

The answer is lengthy. Many entities, corporate decision makers, manufacturers, and in my personal opinion, even some doctors share culpability. There is much we now know, about what was known, and when it was known with respect to polypropylene mesh implant and its success rates compared to existing organic methods, used to address these medical conditions for decades, before the advent of synthetic petroleum-based mesh.

My story is as the older of two daughters trying to cope with a new reality, a new family dynamic. My mother had mesh implant surgery in December 2009. Immediately following surgery, she was in constant pain, and contacted her surgeon who kept telling her the pain was post-surgical and there was nothing wrong.

Mom, a retired RN, knew the pain was different and tried to explain that to her surgeon. The doctor wouldn’t lend credence to my mom’s child-like begging and pleading for help. The doctor didn’t have an answer. Steadily, my mother’s health and quality of life declined as we were left to our own devices to figure out this medical mystery. More than a year of agonizing diagnostic tests, soul-assaulting exams and a roster of medical specialists, and still we had no answers.

By March of 2011, my mother begged to be admitted to the hospital.

Nothing we could do at home helped her with this unrelenting pain. Our family physician admitted her to the hospital’s cancer unit, requiring close observation by nurses skilled in treating the chronic pain of terminal patients. I spent most nights with Mom, keeping a journal to communicate with family and friends. We were all in shock and scared to death, feeling alone and hopeless about the future.

We had few facts:

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• Mom is in insufferable pain.
• It’s inhumane to leave a human being in this condition.
• The original mesh implant surgeon won’t talk to us and doesn’t know what to do.
• Mom is too precious to lose.
• A life of indefinite treatment of symptoms via medication, without regard for cause, is the option presented to us time and again by each new specialist.

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This almost 5-year journey with Mom has taught me so much:

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• A life can be lived while being constantly medicated- trying to stay ahead of the pain- sometimes to avail, sometimes not.
• A life can be lived with invisible wounds that others can’t or won’t see.
• A life can be lived barely able to stay above the surface of life in a lonely, suffocating and dark place, filled with nothing but the torment of severe pain.

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My challenge to YOU: husband, daughter, aunt, sister, father, pastor, neighbor or friend is:

How will YOU become a Warrior, of your own design, to fight on behalf of your injured loved one? What talents do you have to better cope with, try to understand and support your family? If you don’t step into the battle, who will? We are the only hope for our injured loved ones some days, and we can be part of their hope every day. But we must step onto the battleground and take action. I’ve heard many women describe mesh as if slowly dying from the inside out, rotting and disappearing. When our Mesh Angels can’t fight anymore, we must fight for them, be their Mesh Warriors.  Don’t just watch Superhero movies. Write your Warrior Story. Be your family’s Superhero, and triumph over the villain in your loved one’s body and in your family’s life. 

Written especially for my mother.