Dear Doctor, Dear Doctor, Lend Me You Ear
April 19, 2013~ This essay is written by contributor, Nonie Wideman of British Columbia, who has suffered with mesh injuries for years. As a research and writer, Wideman has been a voice of the community of mesh-injured women.
MDND supports more open communication between doctors and their patients who are suffering mesh complications. Thank you Nonie.
Dear Doctor, Dear Doctor, Lend Me You Ear
If you are reading this letter handed to you, you most likely have a woman in front of you, with systemic health issues and complications that started after being implanted with a synthetic medical mesh to repair a prolapse (POP), and or stress urinary incontinence (SUI).
Time is of the essence
If this woman is lucky her symptoms started not long ago, or shortly after mesh implantation before her tissues had a chance to integrate tightly to the mesh, and foreign body reaction (FBR) has not had time to degrade the implant, releasing degradation products from polypropylene or other similar polymer constructs, which in turn cause free radicals like hydroxyl to be released into her tissues. If you have the skills to diagnose mesh complications and FBR accurately and quickly she may stand a chance of having the mesh removed with the least amount of damage possible.
If you do not have the skills to diagnose suspected mesh complications accurately she is at risk of multiple erosions, extrusions, mesh migration, shrinkage, adhesions, constant infections, bladder and urethra damage from mesh perforations. She is at risk of mesh fragmentation, and chronic FBR leading to autoimmune vulnerability. The longer it takes to get biologically incompatible mesh removed the more tissue damage continues to occur. Delicate and very important nerves, especially pudendal nerves, are at risk of permanent damage, if they have not already been compromised by the blind procedure of mesh implantation.
However most chronic FBR to medical mesh implants goes unrecognized as it is an insidiously silent downward spiral in health that may first present as fatigue, anemia, heightened chemical sensitivity, allergic reactions exacerbated and more frequent, with an achy all over body feeling, with pain in muscles and joints. Studies show the average time for Implant Syndrome to be recognized is 2.7 years. Sometimes pain is the first red flag that does not go away after a reasonable healing period from the time of the implant procedure. The pain increases until is not easily controlled by anything but Morphine or Oxcycodone, which means most women afraid of drug addition will suffer with inadequate pain control while doctors fumble around prescribing estrogen therapy and pelvic physical therapy. Wake up docs!!!! If FBR is causing implant failure and internal erosions you cannot see, thickening the vaginal mucosa is not going to stop the FBR or erosions and extrusions but delay having the incompatible mesh removed as soon as possible to prevent complications from multiplying. Having any manipulation of the pelvic floor when mesh is degraded and brittle enables fragments to break off and migrate causing a case of “looking for the needles in the haystack come explant time,” not to mention that mesh being manipulated during physical therapy when erosion is happening is akin to rubbing a cheese grater over your skin.
Who do you refer this woman to?
A woman with transvaginal mesh complications needs a highly skilled urogynecologist who can quickly validate mesh implantation failure, has a high patient satisfaction rate, and is recognized as being an expert having done mesh explants daily if not exclusively, and recognizes that because FBR caused the implant failure it is imperative to remove as much mesh implant material as safely possible to stop all FBR, as well as remove mesh from organs and tissues where it was not planned to be.
This specialized surgeon must display an intimate knowledge of nerve pathways in the pelvic floor and be able to preserve as many nerves as possible without compromising any more nerves than already damaged by erosion or surgical incisions. It would be beneficial to the woman in front of you if this surgeon had access to 3-D ultrasound imaging to help with the diagnosis of mesh complications and the mapping of mesh placement, migration, and fragmentation to assist in the best outcome from diagnostic assisted explantation surgery.
It is time for the standard of care to be upgraded when the current standard of care does not take into consideration new technology or knowledge regarding resolution of less than satisfactory current practices. Who would you send your wife mother or daughter to? Would you send your loved one to a surgeon who has not done hundreds of mesh excisions and reconstructions after mesh injury? Would you send your loved one to a doctor who will not consult with the experts in the field of mesh removal and diagnostic imaging of mesh, who is not confident of his skills to remove mesh adhered to pubic bone when mesh is going to:
1) enable the FBR reaction to continue,
2) cause systemic illness for as long as mesh incites inflammation
3) incite FBR that degrades mesh via oxidization so that mesh leaks toxic products such as hydroxyl (a destructive dangerous free radical)
4) harbour dangerous bacteria in its filaments
5) trigger and enable autoimmune disease pathogenesis
6) cause chronic excruciating pain
Why should you care?
This woman before you trusted a doctor when she consented to a surgical mesh implant. She and the surgeon that implanted her synthetic TVT were most likely not fully informed of all the serious complications of medical mesh implants: that the complication rates are not rare unless you consider a 30 % or higher complication rate as rare or acceptable. What manufacturers failed to warn about is not their fault. Manufacturers have to face juries now. J&J has been penalized, ordered to pay over 7 million dollars for failure to warn of all the complications and seriousness of the complications of its product in the recent Linda Gross vs. J&J lawsuit. J&J took 4 of its meshes off the market last year. Are you now sitting up and taking notice? Did you realize medical meshes can get fast tracked without any or any substantial testing onto the market via the FDA’s 510 K process because they are substantially the same as a product that made it onto the market and then was recalled? You probably like most people thought products that were meant to be permanent implants would all have to be thoroughly tested. You probably did not realize there is no protocol to recall the subsequent approved implants substantially the same as the defective dangerous implant product. Are you feeling as let down and disgusted as mesh complication patients are feeling?
Fault should be assigned to doctors who hesitate to educate their peers to respond quickly, skilfully and compassionately to patients with medical mesh injury and complications. Fault should be laid at the feet of those who failed to report all complications caused by medical implant materials. In Canada doctors are protected from lawsuits when they inadvertently, negligently or erroneously harm patients, so there should be no excuses for ignoring the harm done and not addressing it. Nothing should protect your consciences if you fail to re-educate yourselves with the firsthand knowledge and experiences of patients with mesh complications who can deduce for themselves what went wrong by diligently researching the same materials you have access to but failed to take into consideration.
Many mesh victims are willing to forgive doctors for embracing medical mesh implants before long term studies provided proof of benefit over risk if doctors would listen, learn, and respond to mesh patients without arrogance and self-protective posturing. We know our bodies. We know how we felt before mesh and after. We know how to “google”, research, and study in efforts for self-advocacy when it appears the medical profession has abandoned us. Mesh complications are very rarely “manageable”. How we hate that word. Mesh complications are endured at great physical, financial, and emotional cost. Thank you for reading this letter. Please do for this woman in front of you, what you would do for your own loved ones or yourself in this situation. It is the least your profession can do for the mistakes made harming those who trusted doctors to first “do no harm.”
~ Advocating for women with medical mesh complications.
1. No I am not a doctor!
2. I have researched medical journals, articles, studies, abstracts and women’s support groups for TVT complications for over two years
3. I have experienced mesh injury personally
4. What have you studied regarding TVT complications?
5. Who are you going to really listen carefully to? Will you listen to patients looking for pain relief and quality of life after mesh gone wrong, or manufacturers who profit from selling mesh? Or will you listen to doctors still defending the indiscriminate use of synthetic medical mesh?
God bless an open mind, a compassionate response, and every effort to change that which we can and should.