Your Call to be a Mesh Warrior
July 21, 2013, by Aaron Leigh Horton, firstname.lastname@example.org
For many of us, family members of those implanted with transvaginal mesh, life is now largely about watching someone we love writhe in unendurable pain for days on end, staying up nights kissing foreheads, caressing locks of hair, whispering prayers or songs of comfort, locking eyes with a bottomless suffering we feel helpless to stop, trying to do or say anything that will MAKE. IT. STOP. for just a moment. The focus is and always should be on our injured loved ones but this, as we now know, is a family illness 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 now fights against her every day as it tries to heal from what initially was described to her and thousands of others as a minimally-invasive, outpatient surgery. 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, especially one that came so neatly packaged inside the proverbial Trojan horse, steals our matriarchs so suddenly. The culprit has many names “Transvaginal Mesh,” “Pelvic Mesh,” “Synthetic or Polypropylene Mesh,” and though the product has been scientifically proven to be harmful and toxic to humans, it’s being sold this very second to patients all around the world, through trusting doctor-patient relationships. The mesh is often presented as the gold standard, state-of-the-art solution used to repair two common medical problems: POP (Pelvic Organ Prolapse) and SUI (Stress Urinary Incontinence).
The reality of the mesh’s impact has nothing to do with a reliable solution and certainly nothing of gold. Our mothers, aunts, sisters and grandmothers have been directly injured by surgeon’s knife 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, “How could this have happened?” The answer is lengthy, with many entities and systems, corporate decision makers, manufacturers, and yes, doctors, who share culpability. There is much we now know, about what was known, and when it was known with respect to the toxicity of mesh and its success rate against the more tried-and-true non-mesh methods used to address these medical conditions for decades (Read more here, from Dr. Philippe E. Zimmern (here) ).
My story is as the older of two daughters trying to cope with a new reality, a new family dynamic, one with Mom still at the center but in a different way. My mother had the mesh implanted in December 2009. The last “normal” memories I have of her are sometime in early March 2010, while on a family vacation. She was in pain the entire trip, but she fought through it courageously, as her surgeon kept telling her the pain was just post-surgical.
Mom, a retired head-of-the-class RN, knew the pain was different somehow and tried to explain that to her surgeon. The doctor simply wouldn’t listen, wouldn’t return calls, wouldn’t lend credence. The doctor didn’t have an answer and seemed to me to be afraid of finding one. Steadily, my mother declined as we tried to find out what had gone wrong. More than a year of multiple nerve blocks to try and locate the source of the pain, agonizing diagnostic tests, various specialists, and still no answers. Early on my sister and I attended one of these diagnostic tests, signifying our support and declaration to be part of the solution.
My mother has, sometimes what seems to me, a freakishly high tolerance for pain, partially genetic I guess but also, I figure, a result of years suffering through debilitating migraines. For whatever reason, she has what you might call a thick skin. I believed I was there during this test for moral support or as a chauffeur mostly, in the way I had been as a teenager during trips to the ER, when her migraines would rage so out-of-control, that only IV morphine could come close to taking off the stabbing, relentless, throbbing pain. But this time was quite different.
As the doctor performed the test, I saw a look in her eyes I’d never seen before: all-encompassing, far-reaching, out-of-her-mind terror, the kind you usually only see in a child’s eyes. I have never been to the place she visited that day. And I have never been to the place she has lived every day since.
That appointment, in early 2011, was the real start of the journey for me as a caregiver, as I asked myself, “Is the treatment worse than or equal to the pain of this condition? Where does that leave us? Who can help us now?”
Mom has always been the one who knows what to do. Normally I would have asked her those questions, and she and my step-dad would have had a very pragmatic plan for success, one I would have confidently followed to its end, expecting the results we all anticipated.
By March of 2011, my mother begged to be admitted to the hospital.
My step-dad presented her thrashing and crying inconsolably to their family doctor – out of ideas, completely devoid of another way to soothe. No amount of healthy eating, attempts at something like stretching or yoga, massages, breathing exercises, guided imagery, prayer, healing chants or other well-intentioned suggestions could reign in her pain. Even the meagerness of a steady regimen of oral, opiate-based medications against the adversary of this chronic condition was now apparent. IV narcotics were the only solution presented to us. She was kept in the cancer unit since the high doses of medication needed to keep her somewhat comfortable required observation by nurses experienced with the unrelenting pain of terminal patients. I spent most nights with Mom, keeping a blog to communicate with extended family and friends. Here is an excerpt from my blog that March:
March 23, 2011 11:12pm
“Earlier this evening we all agreed to seek out every last bit of hope from the good news of today. I asked Mom if she could just visualize basking in it, and she said she would.
After a very trying couple of days, we had a break through today. We finally met with Dr. X, a pelvic pain specialist. I think I’m beginning to develop a sort-of Pavlovian response to her, and upon hearing her name, I instinctively relax and associate her with good news and a prolonged sense of calm. Dr. X is thorough, patient, focused and reassuring in a sincere and confident way. I feel like we’re made of flesh and bone in her office. She has other patients with similar symptoms to what Mom is experiencing, so she speaks our language. She uses as many polysyllabic words as all the other doctors, but when she speaks, it just makes sense.
We left there with a comprehensive course of action and a plan that we will be following and testing for the next 8-10 weeks. It includes all the elements that we’ve been discussing as a family:
- Is the approach focused on diagnosing the cause of pain?
- Does the approach work together with pain-relieving medications while not relying on them as a long-term solution?
- Is the approach focused and systematic?
- Do we have a contingency plan if this approach is not producing results?
- Will Dr. X be willing and able to work together with the pain management/medications specialists?
The answer to all these questions is yes. That means we finally have a “treatment plan”. It’s simple really, but it’s the first time we have felt that a comprehensive, cohesive outlook is coming together.
In short, Dr. X’s theory is that Mom’s last nerve block sent her abdominal and pelvic muscles into spasm, and that this flare up in pain is coming from, not the nerves, but the muscles. She believes we can release the spasms with frequent physical therapy. She believes this is quite possibly a long-term solution that will provide significant pain relief. With all the customary caveats, she even shared that some of her patients have become pain-free with this regimen. Dr. X was very supportive of the other therapies we’ve been discussing, so we’re full steam ahead on those as well.
So Mom saw the physical therapist late this afternoon, and starting with next Tuesday, she’ll begin a weekly regimen of traveling on Tuesday and Wednesday for appointments with the physical therapist and also with the psychologist who specializes in treating the mental and emotional distress associated with chronic pain.
In a way, we’re back to where we started, but the difference is that as a family, we’re all in agreement with the courses of action we’re taking; we have doctors we trust as partners; and we have all of you who are now intimately aware of how to support Mom in healing so she’ll never feel totally alone in her pain or God forbid it, forgotten or lost in that dark place from which she can’t return.”
But that was more than two years ago now. After these therapies failed to alleviate the constant pain, our “treatment plan,” quickly faded, as did our family solidarity, into a silence of confusion, fear and sadness, everyone in their neutral corners, no one with answers. No one.
The experience with her roster of doctors left me confused about the bigger picture. How do you make the original urogynecological surgeon communicate with her pelvic pain specialist? How does the pelvic pain specialist maintain a comprehensive plan with the pain management specialist? Why isn’t our family physician at the center of this medical mystery, and most of all, “How is it that I am the only one asking these questions?” I’m no doctor or specialist, but this is logic, project management, common sense. Why aren’t any of these doctors interested in the cause of such an enigmatic syndrome? Why don’t they have a hunger to know more, or at the very least, a compassion that would drive them back to the curiosity of their med school years?
We had few facts:
– Mom is in miserable, insufferable pain.
– It’s inhumane to allow someone to remain in this condition.
– The original surgeon who implanted the mesh won’t talk to her/us and doesn’t know what to do.
– The pelvic pain specialist doesn’t know what else to do.
– Mom is too precious to lose.
– A life of indefinite treatment of symptoms with medication, without regard for cause, seems to be a fine solution for every doctor.
I have never doubted my mother’s pain. Never. But I know many sufferers are doubted by their own family members and by doctors, simply because their wounds seem invisible. My mother’s eyes have made those wounds visible to me. I can read her beautiful, Caribbean-sea-blue eyes as if they were translucent, and I have sorrowfully become all too familiar with what was once an unrecognizable plea for help, and which I can only now describe as a daily terror.
At the expense of seeming biased, my mom is brilliant. She is creative, educated, informed, a lovely person. As a former RN, she knew something quite extra-ordinary was wrong. I ask myself, and so too should you, why would a doctor not listen to someone like that? And if someone “like that” isn’t given real audience with her original surgeon, then what about the rest of us who aren’t well-versed medically, who don’t have a medical career to lend credibility to our pleadings?
Mom didn’t give up. She was a student of her own body. She instinctively knew of the recurrent infections lurking in the mesh and the different type of pain brought on by cysts in and around the mesh. Imaging tests revealed that she was right. I have to fight the temptation towards sarcasm at this moment, because I’m amazed that somehow my mother was able to be patient, patient advocate, nurse, doctor, diagnostician, and healer – all in her unthinkable condition.
With the imaging tests confirming her suspicions, she knew the mesh had to come out. Through the confusion, doubt by other trained professionals, misunderstandings by family and a lack of education about what I’ll call “the mesh syndrome,” she knew the mesh was the culprit. She called it “the alien” and insisted that it had to come out.
As women, we are taught to become students of our own bodies, understanding them through pregnancy and that surge of monthly hormones, self exams, etc. and with that knowledge, the phrase “a mother’s intuition” makes quite a bit of sense, doesn’t it?
Doctors know what they’ve been taught. But patients know what they have lived, and we all know that knowledge and experience are very different things. Neither is more important. Both are necessary. Collaboration, based on a shared desire to know the truth, is the highest ground. Some of the worst emotional and mental agony for my mother and for our whole family has been due to continued invalidation by doctors and the medical community. Not knowing the diagnosis for medical symptoms that present is not an excuse for lack of compassion, feigning ignorance or negligence. There are skills our loved ones have had no choice but to develop to endure the excruciating physical therapy; humiliating, soul-assaulting exams; degrading treatment by uncompassionate doctors; and yet another “this surgery will be the one that works” attitude from us who “just want you to get better.” It is a lot of pressure for anyone, and certainly for someone in debilitating pain EVERY. SINGLE. SECOND. As doctors, caregivers, family, and friends, we must accept that we have the same responsibility to learn new skills, not by necessity, but by choice.
Our loved ones have no choice. Mom sat through birthday dinners in thinly-veiled pain; cried alone after having to decline social engagements, grandkids’ soccer games, phone calls from cherished friends; and she sat feeling purposeless, unable to participate in vocations and hobbies that once called to her. My mom still wrapped Christmas presents, responded to texts, and asked about mine and my sister’s lives, all the while trying to make sense of her new reality life, a life of constant pain and tears, too many to count, and that most damning and worst of all emotions, guilt. Maybe she’d chosen the wrong surgeon. What if she had just endured the original pain and discomfort from organ prolapse? What if it was “all in her head?” What did she do to deserve this? And like many of the other raw, unanswered questions, the answer is nothing. Nothing. Nothing. Nothing.
It’s been just over two months since my mother had her explant (mesh removal), but as is often the case, the surgeon could not safely retrieve all of the mesh. We’re in a holding pattern for now, as she heals and tries to tease out post-surgical pain from the uninvited guest of chronic pain, which has been her constant companion for almost four years now. We’ve been down this road before. Do we dare hope this will be “the answer” or do we risk pessimism, so as not to be devastated for her and with her once again when the pain does not abate? Time will tell. For many women, including my mother, multiple revision surgeries are needed to remove mesh, reconstruct injured organs and eliminate infection.
This experience has taught me that a life that can be lived while heavily medicated- always trying to stay ahead of the pain- sometimes to avail, sometimes not. A life can be lived being made to feel like a street thug-drug addict because insurance denies payment for necessary narcotic medications, or family members can’t comprehend the pain level. A life can be lived with invisible scars and wounds that others can’t or won’t see. A life can be lived immersed in a lonely, internal, altered state of reality that friends and family are unable to share, understand, respond to or cope with adequately.
My challenge to YOU, husband; YOU, daughter; YOU, aunt; YOU, sister; YOU, friend is:
How will YOU choose to live life alongside your injured loved one? What gifts and talents do you already posses to understand, respond to, better cope with and support? Can you use your skills to help make the voices of victims heard? If you don’t have the skills, get them. And if you don’t know how, ask me. Ask someone you know. If you don’t, who will? We are their only hope some days and have the power to be part of their hope every day. I’ve heard it said that having the mesh feels like 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.
Above all what I have learned as the daughter of a Mesh Angel is this:
ALWAYS, ALWAYS BELIEVE THE CRIES OF PAIN AND AGONY FROM YOUR LOVED ONE, NO MATTER HOW ODD THE COMPLAINT MAY SEEM TO YOU. AND NEVER, EVER, EVER GIVE UP HOPE that you will get it right, that we as a community will get it right, and that the family life we once had, can be made whole, but it will not come easily or without strife. Good things seldom do, and it could be argued that our matriarchs are the most good we can experience in life.
Written especially for my mother