When I was eighteen, I lived in the home of an accomplished general surgeon, Dr. Stephen Magyar, as a nanny for his children. During the brief time I lived with the family, I was fortunate to be the beneficiary of his many kindnesses. Sadly, just after I moved in, he was diagnosed with liver cancer that had metastasized to his spine and he only lived a few more months. During those precious days, his hospital bed was set up in the living room where his many colleagues, patients, family and friends could stop by and visit. I could see that he suffering severe pain as the disease took over his body.
I often stopped by his bedside to tell him how the kids were and he offered me many jewels of fatherly advice—something I missed out on in my own home. He looked up at me one afternoon with his yellowing eyes and said, “I wish I could go back and take care of my patients all over again. I regret that I didn’t take their pain seriously enough. If I could just go back now, I’d would give them more pain-killers than I ever did.” His words guided my actions during my 20 years as a nurse. I always put the patient who was in pain at the top of my priority list.
As many as one in four women suffers from pelvic pain after a mesh implant. The vaginal area has a complicated design that even the best researchers don’t understand completely yet. The spaces that surgeons open up when implanting meshes were intended to have many functions and cutting into those spaces leave unintended consequences, consequences that are often misunderstood or ignored by too many surgeons. The area that is cut for transobdurator tapes or pelvic slings is part of the process a woman uses to hold back or start her urine, to engage in sexual activity and to evacuate her bowel. Those spaces also connect to her legs, a crucial part of weight bearing exercises which keeping a woman’s body healthy.
Too often, we hear complains by defeated and depressed women who just left the doctor’s office and felt their doctor was demeaning and dismissive of them and their pain. The women know the doctor was in the wrong but have no power to turn off his/her arrogant attitude. The woman often can’t go somewhere else because that doctor is the only one her insurance will allow her to see. Four years ago, Dr. Boortz-Mart told Pain Medicine News, “Our society cannot continue to afford multiple procedures that have no outcomes data aligned with them.” Trouble with mesh is, there have been no pelvic pain studies with outcomes for physicians can rely on.
Treatments include over-the-counter and prescription pain, anxiety, and experimental medications. All of these medications have passed the same lax FDA process like plastic mesh. One should become extremely cautious and skeptical with prescription medications these days. Having said that, the ACOG American College of Obstetricians and Gynecologists published a recommendation for non-mesh related pelvic pain which you can link to here with the caveat that it relies heavily on prescription medication.
Non-drug related pain interventions include physical therapy, ultrasound, electrode stimulation therapy, ice or heat applications, warm soaks, regular gentle exercise, and nerve blocks. Full, complete mesh removal alleviates pain in many but not all mesh implantees.
Pelvic pain in those who have suffered childhood or adult sexual abuse in addition to the polypropylene mesh injury is a special circumstance. New pain can intensify emotional trauma causing new post-traumatic symptoms. Injuries sustained as a child can alter the physical organization in the pelvis lending to more frequent complications. Unfortunately, lawyers have been encouraging those dually-injured victims to remain silent, not talk to other survivors, in a questionable attempt not to compromise cases. This is wrong because there is a theory of law that if your skull is only as thick as an eggshell and someone hits it, they are still responsible for the injury just as if you had been normal. If you have a preexisting injury, that does not make the manufacturers less liable. More on legal issues coming up soon on MeshTroubles.com.
If you are suffering chronic pelvic pain for any reason, it is important not to isolate yourself, even though the pain limits your activities. I recommend joining discussion groups with people who are dealing with pelvic pain. You will find many more helpful suggestions as well as personal encouragement. Many regions also have group therapy for chronic pain sufferers which can be helpful.
Peggy Day is working on a book to combine all these stories. This is an excerpt from Pelvis in Flames: Your Pelvic Mesh Owner’s Guide. Your input is welcome to help make Pelvis in Flames the book you need to read.
If you’d like to join an online support group and learn about erosion, partial removals, surgeons, or just find out that you are not alone, join my group, Surgical Mesh or check the list of support groups here.
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