Normal reactions to real parts of life are now being shifted into medical diagnoses by a medical and a psychiatric establishment that is fully embedded with Big Pharma. (Big Pharma is a nickname for the world’s vast and influential pharmaceutical industry and its trade and lobbying group, the Pharmaceutical Research and Manufacturers of America or PhRMA. These powerful companies make billions of dollars a year by selling drugs and medical devices, including the ones that cause pelvic mesh trouble. As drug makers learned how to profit from turning normal grief into a major depression, normal pain response into anxiety or bipolar illness, and normal outrage over disrespectful, dismissive and faulty treatment by surgeons into a psychiatric disorder, more and more mesh victims are being given experimental (untested and unproven) drugs without any real proof that they work. They don’t work. Before SSRI’s were introduced, 355,000 Americans were disabled by mental illness and after those pills went on the market, then number skyrocketed to 1.25 million!
Women who have been put through the surgical mesh mill and then treated like second-class citizens have honest to goodness, normal emotional responses. They resist being treated like emotional cripples and yet they are being sent to psychiatrists for a reacting to a very real circumstances. The six stories below are a sampling of thousands of stories from across the world today. Names have been changed for privacy reasons.
Evelyn: “I do not have pain—just complete humiliation at having the fistula and the obvious attention I have to give it. I am a neat freak and this is most unpleasant for me! I keep telling myself that I am not going to die from this and just to carry on. I am definitely an action person, so the best way to deal with all of this for me is to have a plan and always move forward. I remember the doctor saying that it just healed beautifully. Now the fistula!
“There is always a solution or something for you out there somewhere. Don’t be scared.”
Evelyn is employing some of the most therapeutic techniques for her distress. She is not only telling her story, she is offering help to others. Storytelling is one of the most beneficial tools for dealing with sadness and anger. Reaching out to help others is physically and mentally healing as well.
Fiona: “I had a TVT done last Feb, been in chronic, debilitating pain every since. Am trying to arrange funds to have removal surgery, scared to death to have one more surgery.”
Fiona is afraid, a normal response to a very real and present danger. When the only alternative is to go back into the very system that hurt you in the first place, being scared to death is a healthy response. He fears will help her to make very cautious and careful decisions for her future medical care.
Surprisingly, many women were implanted with more than one defective device at the same time:
Ingrid: “I had a TVT-O as well as a ProLift. Stupid and naive that I was, I blindly trusted that they knew what they were doing. What was I thinking?
“They did this procedure through 6 portals on my inner thighs. When I woke up, the doctor stated I gave them a hard time in that he nicked a blood vessel (fishing through my legs) and I had lost a fair amount of blood. Things went downhill from there on out.
“The quality of my life has been really hurt by this ordeal, as one could imagine. Thank God my husband is very understanding.”
Medicine has changed over the past half-century. It has become a business, and concentrates on turning a profit while minimizing the better good of the patient. Who would not feel betrayed by a botched surgery like this? For a doctor to tell a patient who had been paralyzed and under anesthesia, that she “gave them a hard time?” he has to have lost sight of his role in protecting her from harm. The pathology in this case is the surgeon’s. He did not own up to his own lack of skill in using the equipment provided to him to complete a proper implant. It’s called blaming the victim.
Also, Ingrid’s husband is providing one of the best “medicines.” Supportive persons can make all the difference because they can counterbalance the inappropriate accusations and botched surgeries like the ones she experienced.
Michelle: “To my horror, after going to the bathroom, I discovered my uterus had dropped right out of my vagina! I can’t possibly describe the feelings of revulsion and guilt that caused. It took me a few days to regain my composure and go to the doctor.”
“Afterward I was in so much pain I couldn’t stand up straight, walk my usual hour a day, or ride in the car more than 15 minutes without getting into so much pain I broke down in tears.”
Michelle’s story illustrates just how important a woman’s pelvic area is to her. Michelle reacted normally for someone injured in her most pivotal, most private place. Michelle was traumatized even though she was asleep during her surgery. Tears for pain and tears for grief are often combined for trauma victims.
Lucille: “I had a TVT and Marina coil fitted at the same time. The surgeon said, ‘Lucille, this is a simple operation with an overnight stay and you will be a new woman.’ He did not mention any complications or risks involved with the TVT. I took his word and trusted he knew what he is doing and accepted to go ahead with the surgery.
“I was and still am a smoker, although I did mention it to him. Once this is all over I will quit! The stresses of life and this awful leakage are disrupting my life.
“Came around from the operation, coughing so bad and my chest really hurt. I was scared. I could not breathe properly. All I could hear was ‘Lucille, you must give up smoking.’
“That night I could not sleep. I was so uncomfortable I kept watching the clock and wishing for morning. Breakfast arrived and I could not eat, had no energy, and told the nurse, ‘I do not feel well.’
The nurse dismissed Lucille’s complaints several times. Instead, she insisted Lucille go for a walk. About 6 steps into the walk, Lucille collapsed and was carried back to bed.
“An urgent x-ray was done, and I was given oxygen. They discovered pulmonary emboli (clots in my lungs) and collapsed lung. I ended up in hospital for the next 10 days!” “I came home and had severe bleeding. Back into the hospital had marina coil taken out as the doctor assumed it is the coil causing the bleeding. I was not told it could be the TVT!
“Over the next couple of years, I was constantly in and out of hospital, diagnosed with diabetes type 2, heart attack symptoms, tremors, slurred speech, and trouble walking. They could not work out what was wrong with me! I had numerous tests and back and forth to hospital and doctors and was eventually diagnosed with an autoimmune disease.
Three years later, Lucille had more symptoms and her primary doctor told finally diagnosed her vaginal mesh erosion. “Enough is enough. We cannot allow this suffering to go on. This mesh should be banned, it has totally destroyed my life. Although I have kept my mind going with graphic design, I cannot walk very far and now I am housebound! I cannot wait to get this thing out of my body! “I am a strong person and believe in inner faith, our beautiful creator has been with me and guiding me through each day, and with constant praying I know eventually this evil mesh stuff will be banned!”
Lucille is employing two of the most potent and effective methods for handling her emotional distress. She is sharing her experience with others giving her a sense of normalcy and community and she relies on her faith in God, giving her personal inner strength. Like Evelyn, she is reaching out to help others.
Tricia: “For me it centers on ‘informed consent,’ both with the physician and the company that manufactures the mesh. The MD really did a different procedure with a different product than I consented to and that’s just not cool. The standard of informed consent is to provide to a patient with the most common and most serious complications. It also really irks me, as a nurse, that informed consent was really not provided, even after I asked for it.
“(Before my operation), my doctor had offered several options and I took several weeks to decide. I located four women who’d had bladder surgery using monofilament slings and they all were having problems. I told my surgeon I did not want a (plastic) sling and asked about the biological swine tissue sling. The surgeon instead suggested an abdominal sacral colpopexy. I agreed to this procedure, thinking it was the swine procedure. The patient consent form was in medical terminology and listed the procedure as ‘abdominal sacral colpopexy, transobturator sling.’ The risks listed were ‘bleeding, infection, recurrent cystocele, persistent incontinence, urge incontinence, bladder/bowel injury.’
“(After the surgery,) I had fever, severe abdominal cramping, my right leg was numb, and I felt as if something was lodged at the top of my vagina. I made several visits to the (two) surgeons involved and neither thought I had any valid complaints. Neither would offer a straightforward answer. They never mentioned an implant could be causing my symptoms.
“At week five I obtained the operating room notes and to my astonishment discovered that two implants were now securely placed in my abdomen: a Gynecare polypropylene 10×10 inch mesh and an AMS Monarc polypropylene mesh sling. I was furious. Because of my anger, the surgeons suggested such things as tranquilizers and psychological help.
“It has been three months and I have seen six surgeons. I’m told these implants cannot be removed. My symptoms have intensified. I am in pain and I am angry. I recently obtained literature listing the manufacturers risks: ‘foreign body response, vaginal extrusion, erosion through the urethra and surrounding tissue, migration of the device, fistula formation, adhesion formation, pain, scarring that results in implant contraction, damage to vessels, nerves, bladder, urethra, bowel’ and more. Had I known any of these risks, I would not have had the surgery. I am not alone. I have since spoken with hundreds of men and women who are having complications with implants. Some, like me, didn’t know an implant was part of their surgery until complications arose.”
Tricia’s anger is understandable and normal. She felt she did not need pills or psychological help and she later turned her anger into action by contacting her congressman and governor and starting a petition to put an end to the practice of performing implants without proper informed consent.
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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