Too many surgeons are sending patients to have a CT (Cat Scan) and, when the radiologist says he/she can’t see mesh, tell the patient the mesh must have disappeared or dissolved when a CT cannot identify mesh. Plastic mesh does not dissolve. Sadly too many patients have their pain disrespected or disregarded when the problem is the doctor’s. Only specialized 3D Ultrasound with the right technician and radiologist (more on this coming in another blog soon) and specialized MRI’s with the skills to see it and read it can identify mesh.
Here is a graphic, courtesy of www.scbtmr.org that you can print out an take to your doctor.
How to see mesh with an MRI
If you are helped by what you read here or if you need to know more about any particular topic, comment below or email me privately at email@example.com.
As many as one patient in three suffers from a erosion after a mesh implantation (the blue plastic woven mesh can be seen inside a pelvic organ by the doctor). This is one horrific mesh trouble because erosion is an extremely painful and disruptive injury . The best way to avoid it is to tell your surgeon that, under no circumstances will you agree to a mesh implant. That is very easy for me to write but a very difficult thing for a patient to do. It can be a very disheartening thing for you to read if it is too late because you already have the mesh implant and your doctor said it is eroded and he plans to trim it up a bit or do a “midline sling incision.” Please don’t make a single decision the day he talks about that in his office. Tell him you’ll need to do some research and make another appointment. You’ve got a lot of thinking to do.
What is erosion? Erosion is a when a part of the body is “being worn away, as by friction or pressure,” in this case, by mesh. In medical studies, the term erosion is really three different complications: exposure, extrusion and perforation. Exposure is diagnosed when the mesh reveals itself to your physician. Many doctors tell a patient her mesh has not eroded because her doctor has not seen or felt it. However, mesh erodes first through the outside layers of organs and only becomes visible after it makes it way through all the protect tissue layers. Tests like pelvic examinations, cystoscopy, sigmoidoscopy, CTs, MRIs, and common ultrasound techniques are not always effective at finding a real erosion. In reality, your doctor cannot definitively say you don’t have a mesh erosion without performing surgery and examining the entire path of the sling.
Extrusion is when the mesh passes gradually out of the body structure or tissue like a loop of mesh tape found inside the vagina. (If you follow this link, there are some very graphic pictures of this injury.
Perforation is an abnormal opening into a hollow organ (e.g. vagina, bladder, rectum), most often caused by a bad implantation surgery.
Risk factors: Your chances of developing a mesh erosion varies greatly—from zero to 33% (depending on who conducted the medical research). Some researchers say it makes a difference whether the mesh was implanted to treat stress urinary incontinence (younger population) or pelvic organ prolapse (older population), or whether is was implanted with a vaginal or abdominal surgical approach. If your surgeon is new to this complicated procedure, if poor technique is used, which of your surgeon’s hands is dominant, which types of mesh is used, whether or not it is coated with silicone, whether a trocar is used, your risk is higher. If you are older and your estrogen levels are lower, if your vagina is aging, if you’ve had prior vaginal surgeries, diabetes, smoke or take steroids, your risk may higher.
Treatment: You see, the manufacturers told your doctor that the best way to handle a vaginal erosion is to take a pair of scissors and cut out the bits and pieces he can see right inside his office–without so much as a shot of lidocaine, and send you home some vaginal cream to “encourage” vaginal tissue growth. The handful of surgeons who have the best success at treating erosion, including Shlomo Raz at UCLA plead with patients not to let anyone cut pieces out of surgical mesh because it makes it nearly impossible to remove all of the remaining sling later on. Cutting bits and pieces leads to multiple surgeries and when complete removal is finally attempted, that surgery can take hours and hours under general anesthesia.
Your doctor probably got his mesh education in a paid weekend seminar (called cadaver clinic) or partnered up with another surgeon to do a few procedures or a sales representative scrubbed in to help with a few implant surgeries (more on sales reps soon on MeshTroubles.com) The sales rep drops by your doctor’s office regularly to teach your doctor that he/she should cut bits and pieces of mesh. I cringe when I read women’s accounts of those procedures. They say they felt every snip of the scissors and cried out when that the mesh is clipped and the doctor just kept at it ignoring their pain. The experience was so excruciating and the women were so traumatized that they could not stop remembering that experience for weeks, even years, after.
First-person reports of the horrors of erosions treatments, often written in private support groups online, make me wonder what became of the medical community I was once part of. Will it ever get its act together and start listening to the patients instead of the sales reps who have their own financial gain at heart and not your best interest.
Wait for the right surgeon to handle your erosion. Your pain and loss of function may make you feel like you just want to run to the closest operating room and get rid of your pain, but there are very few surgeons who will do it properly. I really recommend you take some time and find the one who will do it right the first time.
Why are they clipping? Here is some easy math: Clipping the mesh in the OR is a quick (<30 minute) income for a surgeon. If he can schedule 16 of those in one eight-hour day (and many do) he can bring in between $5,000-$32,000—an easy day’s pay. When that mesh erodes again, he gets another surgical fee—and so on and so on. The original problem, incontinence or prolapsed uterus, becomes drops to the back of the patient’s mind.
Complete removals: I’ve seen this over and over again: Women who saw surgeons who were able and willing to remove the entire mesh in one surgery have the best success and leave the support groups and get on with their lives. Patients with complete removals are not immune to repeat surgeries, but most are saying they have returned to their jobs, their families, their fun and, most importantly, the relentless pain is gone.
Partial removals: Surgeons say finding bits of mesh after a partial removal is like removing gum from hair. Bits and pieces of mesh remain behind, like shrapnel. When a doctor cuts just the parts he/she can see, the rest of the mesh springs backward and grabs onto whatever it is next to–sometimes the outside of the bladder or vagina, nerves, blood vessels, healthy tissue, and it curls and shrinks taking healthy tissue with it. The toxins in the polypropylene mesh and the bacteria colonies next to it are released into the surrounding tissues and into your bloodstream.
Mesh troubles begin slowly and patients are referred by their surgeons don’t address the right issue: the mesh needs to come out. All of it! When partial removals are done, women are reporting up to dozens of surgeries. Surgeons say finding bits of mesh after partial removals is like removing gum from hair or like finding shrapnel.
So, why did I name this blog Penis Fly Trap? Just imagine sex with a piece of plastic screen stretched in the middle of your vagina. It not only cuts through your delicate tissue, it cuts your mate’s penis during normal sexual movements. Husbands and lovers have been scratched, cut and scarred by eroded mesh and all too often couples have been forced to abandon intimate relations. The number of divorces among mesh-affected couples, most who started with strong healthy relationships, continues to rise as the challenge of living in the aftermath a mesh disaster becomes too much of an ordeal.
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, check the list of support groups here.
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This blog contains first-hand opinions about pelvic surgical mesh from a calliope of experience: from 8 years of meetings, phone calls, emails and social network with mesh victims, interviews with surgeons, years of front-line emergency nurse work and early work in biostatistics and medical research, to walking the mesh walk today. I’ve learned about the magnificent inner strength of women facing unparalleled and unimaginable pelvic injuries and, along with it physical, emotional, social and spiritual challenges that would buckle the knees of the bravest soldier. These women inspire me in their tenacity and unwillingness to let go of the true joy in their lives.
To those women, I dedicate this blog.