Tag Archives: pain

Doubly Traumatized: Pelvic Mesh & the Sexual Abuse Survivor

Dual Trauma

Two things happened this past week that make it imperative to write about the connection between two traumas: sexual abuse and pelvic mesh injury.

First, Melynda, a dually-traumatized woman wrote a tearful story of her trip to get a transvaginal ultrasound:

I arrive at my scheduled time, make my way to radiology and wait for someone to take me back to the room. My pain is an 8-9 at this point and I am starting to shake because, goddammintalltohell, I am so exhausted of having strangers fiddling with my lady parts, I can’t even sit down and relax. (Remember also I am a survivor of child sexual abuse/incest and rape when I was 17 and have had all the wretched trauma of mesh, too).
In walks this older gentleman in scrubs and says, “Are you here for an ultrasound?”
I was so confused. Why is there an old man telling me he is going to be doing my transvaginal ultrasound!!!!??????
I started crying right then and there. “No, no, no, no, NO. I can’t do this with you. I am so sorry, I need a woman tech.”
He tells me it’s him or I will be forced to reschedule. I lose it. I tell him I need some time to calm myself down and then I go lock myself in the bathroom and sit there for 15 minutes while I sob uncontrollably and struggle to breath.
Before this mesh disaster, I wasn’t like this. I could have pelvic exams with no problem. I have been to years of counseling to help me overcome the abuse/incest and rape and I count myself as a survivor of both of those things. But these mesh injuries and the resulting treatments I have to endure. That is what left me sobbing in the hospital bathroom, shaking so hard I couldn’t even hold my phone.

Two days later, Buzzfeed published a document written to an arrogant rapist. The letter set off a maelstrom of outrage. The valiant victim described those hellacious moments when she slowly came to the realization she’d be brutally raped:

I … went to pull down my underwear, and felt nothing. I still remember the feeling of my hands touching my skin and grabbing nothing. I looked down and there was nothing. The thin piece of fabric, the only thing between my vagina and anything else, was missing and everything inside me was silenced. I still don’t have words for that feeling. In order to keep breathing, I thought maybe the policemen used scissors to cut them off for evidence.

Women dancing copy

Freedom is for women, too.

The physical and psychic numbness, immeasurable pain, wanting to shed her own body, and begging for time to process her trauma; while her attacker and the judge continue to intensify his horrific attack by turning the spotlight of blame onto her instead of him. Her words set off a campaign to remove the judge and, at the same time, further ignite the opprobrium of pelvic mesh-injured women who suffer so many of the same symptoms. A pelvic mesh-related injury feels like a rape in the aftermath. For all intents and purposes, it is rape, sometimes with genital mutilation.
For sexual assault victims, mesh pain takes them right back into a post traumatic state. Pelvic mesh victims are offered little redress while the device makers are permitted to increase sales, rush new versions to market, and continue to profit unfettered.

You took away my worth, my privacy, my energy, my time, my safety, my intimacy, my confidence, my own voice…

How many pelvic mesh victims have uttered these same words? And these:

I am no stranger to suffering. You made me a victim. … For a while, I believed that that was all I was. I had to force myself to … relearn that this is not all that I am. … I am a human being who has been irreversibly hurt, my life was put on hold …
My independence, natural joy, gentleness, and steady lifestyle I had been enjoying became distorted beyond recognition. I became closed off, angry, self deprecating, tired, irritable, empty. The isolation at times was unbearable. You cannot give me back the life I had before that night either. While you worry about your shattered reputation, I …hold … spoons to my eyes to lessen the swelling so that I can see.
I … excuse myself to cry in stairwells. I can tell you all the best places … to cry where no one can hear you. The pain became so bad that I had to explain private details to my boss to let her know why I was leaving. I needed time because continuing day-to-day was not possible. I used my savings … I did not return to work full time … My life was put on hold for over a year, my structure had collapsed.
There are times I did not want to be touched. I have to relearn that I am not fragile, I am capable, I am wholesome, not just livid and weak.

If you would like to join a small support group for people with both mesh injuries and a history of sexual abuse/assault, join here. ,–LINK UPDATED

Post Traumatic Stress Syndrome is common to both injuries and healing involves stages. No two women are ever alike and no healing patterns are identical. In hopes for your continued, safe, comforted, and thorough healing, here is a list of the stages:

Stages of healing from sex abuse

Page 1

Stages of healing from sex abuse pg 2

Page 2

I’d like to hear from you 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 daywriter1@gmail.com.
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Partial Pelvic Mesh Removal — Wrong Solution to Permanent Problem

Your surgeon says he or she can snip the part of the mesh sling they can see, a quick operation and you’ll be better. Or says he can cut it to release it because it was put in too tight. Or, he promises a full removal but the operation takes less than an hour and, if the parts go to pathology, most of the mesh is still not accounted for.

Women who knowingly or unknowingly have partial removal surgery come to regret it. They issue strong warnings for the lucky women who read or search for answers online before signing up for a partial removal. Thousands of Urogynecologists and Urologists do partial removals. The very people who profit from mesh tell those specialists how to handle complaints: just cut a little out. Some heartless doctors cut it right there in the office with no anesthesia whatsoever.

The woman who have been through this tell newcomers not to allow a surgeon to cut bits and pieces of mesh but to leave it whole for a qualified surgeon with the skills to necessary to remove the entire device in one operation. They warn that doctors are not telling the truth about those partial surgeries.

Frayed rope is like sliced mesh

Partial removal can be a temporary solution to a permanent problem. Nearly everyone gets temporary relief after a partial surgery. When a rope breaks, the ends fray. That’s what happens with partials. All the ends leak toxic chemicals, stirring up a immune storm inside your body and spring back, eventually attaching to other parts of your vagina, bladder, intestines, bones, nerves, and blood vessels. After a year or two, you develop new symptoms and go looking for a doctor who can help. More than 99% of board certified surgeons will do another partial. Some women have dozens of surgeries before finding help from advocacy groups.

Be very careful. Get the whole thing out in any way you can because you are in the best possible shape to have a good outcome when your surgeon goes after the whole thing and it’s still intact! When mesh is cut, the next surgeon must go searching for shreds of it. They compare that surgery to trying to get bubble gum out of hair or searching for shrapnel.

POLY IS FOR CUTTERS

If your surgery took less than four hours, consider that it may not be a complete removal, get your medical and surgical records and your pathology report. Learn the dimensions of your implant and ask for an accounting for every piece of it. Before your explant surgery, demand a micro and macro pathology be done. Afterward, get those reports!

We’ve found only five surgeons in the U.S. who consistently prove they removed complete pelvic mesh including arms or anchors (fixation devices):

  • Shlomo Raz, UCLA
  • Dionysis Veronikis, St. Louis, MO
  • Una Lee, Seattle WA
  • Dmitriy Nikolavsky, Syracuse, NY
  • Michael Hibner, Phoenix, AZ

The surgery is very risky but research has shown that is in no more risky that partial removals.

Beware of sugeons loan companies Beware of Mesh News
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.
PelvicMeshOwnersGuide.com to learn more about pelvic mesh. I’d like to hear from you 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 daywriter1@gmail.com.





It’s Not Your Fault – By DebC

Below is an excerpt from another blog, MESHMENOT, by DebC who makes a very important point, especially for women. Simply put, it is not your fault that you had mesh implanted.

It Is Not Your Fault
Are you suffering from mesh complications and feeling guilty for “allowing” mesh to be implanted in your body in the first place?
Well then, I think, that you should think again.
No one  suffering from mesh complications should be feeling guilty.  This is not the patient/victim’s fault.  They should not have known better.  Nobody that is mesh-injured should be blaming themselves regardless of what kind of mesh it was or when they had it implanted.
Many who get mesh are not even given all the facts and options upfront.  I’ve heard from many who did not even know their doctor planned to use mesh until after the fact. The sad truth is that if you walk into almost any doctor’s office today and say you pee a little when you sneeze, he (or she) will probably recommend mesh, despite two FDA warnings, FDA adverse event reports of severe complications, and over 100,000 lawsuits.
Most likely, when you visited your doctor, he downplayed your valid concerns. He may have said the mesh, or tape, or sling he used is not the same thing that’s in the news and he’s chosen a safer product. He may have said his product was your only option. Serious and debilitating mesh complications rarely are acknowledged by most members of the medical community, so those who seek a second or third opinions find no real answers.
You are not to blame. When it comes down to it, most people trust their doctors. Period. That’s what we were taught to do: listen to our doctor.We are not medical professionals and some doctors will take advantage of that, chastising us for searching for answers online and trying to diagnosing our own complications. Many doctors take offense when their skills are questioned but, fortunately, there are doctors out there who listen and sincerely engage with their patients. There are even a few doctors who remember how to make repairs without using synthetic mesh–they are worth finding.

MESH IS NOT FOR BODIES 9
It’s human nature to kick ourselves in the ass.  Guilt comes too easily for most of us.  It may be because we like to believe we are in control of most things and feel we should be. It’s easy to feel like we should have known better, especially when we start doing more research and realize just how dangerous mesh is.  Then we wish that, somehow, we would have  known better than the doctors who recommended mesh in the first place.  But, hind-sight is 20/20 and most of us do not believe we know better than our doctors until we wind up dealing with all kinds of unnecessary mesh complications. – by DebC on MeshMeNot

 


“Even paranoids have real enemies”—Delmore Schwartz 1913-1966


 

The definition of paranoia is “an unfounded or exaggerated distrust of others.” When thousands of mesh victims gather and share stories of horrific infections, injuries, illnesses, disabilities, and even death, distrust of the maker of the product is certainly not unfounded.
If you’d like to read more on this mesh topic and many others, start at Deb C’s website here and look around while you’re there for more of her well-researched and fascinating writings.


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. Subscribe to PelvicMeshOwnersGuide.com to learn more about pelvic mesh. I’d like to hear from you 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 daywriter1@gmail.com.




22+ Crucial Questions to Ask Surgeon Before Mesh Surgery

 1. What is the operation being recommended? Is it necessary?

 2. Why is the operation necessary?

 3. I am aware that a bladder sling or hernia mesh is made of polypropylene and the material is the same, whether it is called a “tape” or “minitape.” I do not want polypropylene in my body. Are you willing to do the surgery without the use of synthetic surgical mesh? {__ I am allergic to polypropylene (check if applies to you).}

4. What are my alternatives to this procedure? (for example: I am aware the Burch Procedure has the same rate of success as synthetic surgical mesh. Are you able to do an alternative procedure)

 5. What are the benefits of the surgery and how long will those benefits last?

 6. What are the risks and possible complications of having the operation?

 7. What are my possibilities if I choose not to have the surgery?

 8. How many of these surgeries have you performed?

9. For which specialty do you have a board certification?  Urology, Urogynecology, Gynecology, General Surgery, Colorectal Surgery?  Other?

10. Where will my surgery be performed?

11. How long will my operation take?

12. Why type of anesthesia will be administered? If it is not a hospital, is there emergency equipment if I should have trouble with anesthesia? What is the plan for emergencies? 

13. What type of incision will be used? Will it be an open procedure, minimally invasive or laparoscopic?

14. Do you have to cut close to larger nerves to complete this operation?

15. What are my chances for getting new nerve damage?

16. What is the risk of mesh erosion into healthy organs from this surgery?

17. What are my chances for getting a wound infection? What is the hospital’s nosocomial infection rate? Do you provide antibiotic prophylaxis?

18. What are the specific risks of this procedure?

19. What will my operation cost? What else will I be charged for?

20. What can I expect during recovery?

21. How will my life be changed for the good or bad after this operation?

22. How many future surgeries might I expect after this surgery if there are complications?

Added question: Are you planning to have a salesmen in the operating room with you? I do__ do not___ prefer to have a sales representative in the OR with me.

(Click here for download of copy with fill-in-the-blanks.)


 

 POLY IS FOR ADA RAMPS


 

Places to check-up on your surgeon

It is important to have confidence in the doctor who will be doing your surgery and you can make sure that he or she is qualified. Each state licenses its physicians. Take the time to search for:

       “[Name of State] physician license verification” for your own surgeon.

Make sure to check for disciplinary actions taken or whether the license is current. Example here.

  • Ask your primary doctor, your local medical society, or health insurance company for information about the doctor or surgeon’s experience with the procedure.
  • Make certain the doctor or surgeon is affiliated with an accredited health care facility. When considering surgery, where it is done is often as important as who is doing the procedure.

From PelvicMeshOwnersGuide.com                        © Peggy Day November 27, 2015





25 Crucial Questions to Ask Your Mesh Removal Surgeon

1. What is the operation being recommended? Is it necessary?

2. Why is the operation necessary?

3. What are my alternatives to this procedure?

4. What are the benefits of the surgery and how long will the benefits last?

5. What are the risks and possible complications of having the operation?

6. What are my possibilities if I choose not to have the surgery?

7. How many of these surgeries have you performed?

8. For which specialty do you have a board certification?  Urology  Urogynecology  Gynecology √ General Surgery  Colorectal Surgery?  None Other 

9. Where will surgery be performed?

10. How long will my operation take?

11. Why type of anesthesia will be administered? If it is not a hospital, is there emergency equipment if I should have trouble with anesthesia? What is the plan for emergencies? 

12. What type of incision will be used? Will it be an open procedure, minimally invasive or laparoscopic?

13. If mesh is embedded in my bladder or urethra, do you have the skills to take it out?

14. If mesh is embedded into my obturator spaces, do you have the skills to take it out?

15. If mesh has eroded into my colon or rectum, do you have the skills to take it out?

16. If I have more than one mesh, do you have the skills to find it and take it out?

17. If mesh is close to a blood vessel, do you have the skills to remove it?

18. If mesh is close to a large nerve, do you have the skills to remove it with the least amount of damage?

 19. What are my chances for getting new nerve damage?

 20. What are my chances for getting a wound infection? What is the hospital’s nosocomial infection rate? Do you provide prophylaxis to address biofilm-related infections?

21. What are the specific risks of this procedure?

22. What will my operation cost? What else will I be charged for?

23. What can I expect during recovery?

24. What are the ways will my life be different after this surgical procedure?

25. How many future surgeries should I expect?

(Click HERE for Printable Version with Fill in the Blanks.)


Mesh is not for bodies in motion

Places to check-up on your surgeon

It is important to have confidence in the doctor who will be doing your surgery and you can make sure that he or she is qualified. Each state licenses its physicians. Take the time to search for:

       “[Name of State] physician license verification” for your own surgeon. Example here.

Make sure to check for disciplinary actions taken or whether the license is current.

  • Ask your primary doctor, your local medical society, or health insurance company for information about the doctor or surgeon’s experience with the procedure.
  • Make certain the doctor or surgeon is affiliated with an accredited health care facility. When considering surgery, where it is done is often as important as who is doing the procedure.

 


 

  • 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. Subscribe to PelvicMeshOwnersGuide.com to learn more about pelvic mesh. I’d like to hear from you 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 daywriter1@gmail.com.


Did a Salesman Oogle Your Pelvic Mesh Surgery? – Salesmen in the OR

You may be surprised to learn just how your doctor purchased the pelvic sling he put in your body. Truth is, he didn’t have to lift a finger. His sales rep brought it to him. Moreover, there is a good chance your salesman watched your doctor put it in you and, he may even have “scrubbed in” and performed part of your surgery.

It is no accident that your surgeon “forgot” to mention the manufacturer’s rep might be in your surgery. Manufacturers are well aware that the practice is very controversial and don’t want you to know. David S. Hilzenrath discovered the obfuscation while preparing for his 2009 Washington Post story about salesmen boosting sales by participating in operations:

“(S)ome companies want nothing to do with a story about sales rep in the operating room.
“‘I would hope that you would not mention Boston Scientific in your story,’ a spokesman for that company e-mailed.
“Major device makers such as Johnson & Johnson, Stryker and Zimmer declined to arrange interviews for this article.”

POLY IS FOR ELECTRIC WIRES

Mesh injured women began realizing that manufacturers invaded their surgeries, not when they were asked to sign a consent for an observer to be there while their genitals were being operated on, but afterward when they found evidence by reading their own charts. Detail men around the world routinely attend surgeries to make sure doctors don’t use competitors’ products.

In 2008, Ronda Yancy (not her real name) was appalled when she retrieved her own medical record: “I found out, after my surgery, that a Johnson & Johnson Gynecare sales representative was in the O.R. with me.”

Yancy, who died at 52, after living her final years dealing with mesh complications and a string of illnesses, had been implanted the Gynecare Prolift (a polypropylene-based surgical mesh device used to treat pelvic organ prolapse). The Prolift was first introduced by J&J in 2005 without an F.D.A. approval and was soon the source of alarming federal complaints. It wasn’t removed from the market until a year after Ronda’s death, in 2012.

Ronda’s pelvic sling sawed itself out of the space it was supposed to be and into her vagina, causing her suffer years of infections and disabling pelvic pains. “I sure never thought that some day I’d be crying just cause I can’t stand to wear underwear anymore, much less pick up my grandkids,” said Ronda. “After the surgery I couldn’t walk properly and am in constant cutting pain. Doctors say I am the first patient to ever have problems.”

After Ronda posted in an online support group, others began to look at their operative reports and at least three found that salesmen had been in the room with them while they slept. One said she felt like she’d been “drugged and raped.”

One nurse wrote to the group, “The hospital loves for the reps to come in because their labor is free and they provide free products to use. The reps bring in pizza dinners and cater lunches from time to time and so the O.R. staff loves them too.

Trendelenberg

Jack-knife position for vaginal surgery. (Posed by clothed woman)

Bill Mackay, a high school drop-out and device salesman who performed the major part of a surgery that crippled a man in 1975, was never mentioned in that patient’s chart. He later wrote in a tell-all book, Salesman Surgeon, that he took over lead surgeon, David Lipton’s position during a hip replacement, ordered the nurse to hand him sharp instruments, hammered and chiseled away at bones and removed one hip prosthesis and implanted another. He said it was the “one of nicest pieces of surgery (he’d) ever seen or done”  but the patient, Franklin Mirando didn’t agree. The forty-two-year-old service station owner never walked again after Mackay was done with him.

In 1977, criminal charges for assault and misrepresenting business records were made against salesman Mackay, two surgeons, a nurse and the Smithtown General Hospital. Investigations were launched by both state legislators and the Sulfolk County Medical Society. Despite all the hoopla, the charges were eventually dropped and the manufacturers across the country began to have free rein inside operating rooms.

What could possibly go wrong when you send wet-eared salesmen into an operating room? In 1998, another device rep was sued after he operated a machine during a fibroid removal surgery and 30-year-old Lisa Smart died within hours. Lawyers found Lisa’s surgeons had botched many aspects of her surgery including overloading her with fluid. She drowned. Her husband’s lawyers were also shocked to discover Johnson & Johnson sales rep, David Myers, was operating the dials on the unauthorized machine that delivered electrical impulses to her uterus. “The patient was never given the chance to consent to the use of the equipment or the presence of the salesman,” the New York Times reported at the time. The hospital a was fined $30,000 and Myers disappeared from sight. Yet again, in the face of another disastrous outcome, device marketers stepped up their pace.

Classes for prospective salesmen include topics like: “how to get inside a surgical suite without an invitation” or how “to sell without making the surgeon feel that he’s being sold” or even “the art of engaging surgeons in conversation.”  Candidates are invariably young, good-looking go-getters whose training lasted no longer than a few weeks. Although a college education is recommended, it is not always required. Despite the fact that pelvic mesh sellers are given an unfettered view of your genitals, there is no evidence that they were ever required to go through a background check–although your nurse sure was.

bathing-machine-with-men-ogling-women

Recently, two pelvic mesh recipients found out that salesmen had been with them by reading their charts. One woman noticed a set of unfamiliar initials next to “Ass.,” or assistant surgeon, on her operative report and set out to investigate. She found another document with the full name spelled out and remembered her surgeon mentioning he was going to “ask the advice” of his salesman with the same name. She was never told he would be there. A modest woman, she can’t digest the fact that a total stranger was afforded a clear view of her most private area. As if to compound the emotional harm from realizing a salesman had seen her tilted backward, legs spread on an operating table, she said the same sales rep later visited her in her home–right after she made an official complaint about her mesh injuries.

It the manufacturers are working hard to hide the presence of salesmen in operating rooms, there is no way to know if, when your transobturator-tape was pulled to tight, it was really the detail man who tugged too hard on that trocar or if his scrubbing technique was not up to standard and that’s why you had a post-operative infection.

If you would like to look up your medical record, be prepared to put a little wear and tear on your shoe leather. Go to your hospital medical record department in person and ask for the complete report of your surgery, including the label for you implant. Most medical record departments provide only the surgeon’s dictated report, especially when you ask by mail, but there is a lot more paperwork than that. Look for your consent, your anesthesiologist’s minute-to-minute accounting, your nurse’s count of sponges and instruments, and your interoperative report, which should contain the names of everyone who attended your surgery.

Yancy felt she was invalidated every step of the way after her implant. Doctor after doctor told her, “Mesh is the gold standard, it can’t be the mesh.” She summed it up in one word saying she had been “Gaslighted,” a reference to the 1944 movie, Gaslight, in which Charles Boyer pulled dirty tricks on Ingrid Bergman and then told her she must be going crazy–all the while pretending he had her best interest at heart. What a perfect phrase. Are you being Gaslighted?


Peggy Day is working on an investigative report on pelvic mesh salesmen in the operating room. She welcomes any input you may have about the questionable practice.

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.

Subscribe to MeshTroubles.com to learn more about pelvic mesh. I’d like to hear from you 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 daywriter1@gmail.com.

Handling a Trip To The Emergency Room With Mesh Trouble

Once upon a time, a more experienced emergency room nurse told me that doctors are bad with headache and backache patients because they can’t see the pain like they can see a broken arm or a heart attack. It is infinitely more rewarding for an ER doctor to put a cast on an arm or order the best medication to stop a heart attack in its tracks than to give a shot to a pain sufferer who will softly murmur a thank you, wrap herself in her blanket, and walk out the door with her head down and her husband carrying her discharge papers and her purse.

Just remember—when you are about fantasizing recreating Shirley MacLaine’s hospital scene, and screaming “GIVE HER THE SHOT!” at the nurse, your nurse is probably fantasizing about reenacting Jerry Maguire’s quitting scene.

POLY IS FOR EMERGENCY EXITS

Here are my thoughts to help you have a successful ER visit.

 

 

In a successful ER visit:
◆    You are treated in a timely manner with respect to circumstances
◆    You are treated with respect
⁃    Your privacy is respected
⁃    You are kept comfortable
⁃    All team members speak to with you as an equal participant in your care

◆    Staff:
⁃    Addresses your problem
⁃    Offers a correct and thorough diagnosis
⁃    Gives you appropriate treatment
⁃    Gives you enough treatment to get you through to your next doctor visit

Now, here are a few suggestions to help you get the best out of your ER visit:
◆    Expect to wait
⁃    The ER uses a system of priorities that is very similar to Mazlow’s Hierarchy with your ability to get air at the bottom platform of the pyramid. Next come your heart beat and circulation, and on and on…
◆    Make yourself personable

⁃    Be honest & don’t exaggerate. Triage nurses have seen a lot of people in pain and a lot of injuries and illnesses and have a natural instinct for dramatic behavior. If they cannot see your pain or injury, help them understand it. Try describing it with commonly understood details.
⁃    Ask for the help that you need. Explain why you are there and what you expect as an outcome of your visit. For example, say, “I have a plan to see my doctor in five days but I need pain medication to get me through until then.”
⁃    If you feel you are being demeaned or talked down to, turn it around without sarcasm and ask the doctor what he recommends you could do or what he might do in the same situation. If you are out and out mistreated, ask for another physician (or nurse).
⁃    If you have an expectation when you arrive that you will be mistreated, check it at the door. Don’t start by saying, “I have pelvic mesh and I am part of a lawsuit.” Those are toxic words to a team that is practicing defensive medicine— which is what all ER’s do.
maslows-hierarchy-of-needs

I found another blogger,  unnamed, who addressed the topic, “ER visits” for chronic pain sufferers. I’ve abbreviated a few of her suggestions:
◆    The emergency room is the last resort after trying every solution at home and calling your doctor or patient care team or going to an Urgent Care center.
◆    Make sure you have a regular physician or primary care doctor who manages your care.
⁃    Look at local and even national support groups for your condition(s). They will have lists of hospitals and even specific doctors in your area who have been a good match for others in your situation. If those doctors are not taking patients, ask their staff whom they would recommend.
◆    Be ready to show them that you tried to contact your regular doctor before going to the ER
⁃    The ER is more sympathetic to the patient who has been told to go the ER by his doctor or his team.
⁃    It makes it clear you are only using the ER as a last resort.
⁃    Bring a letter from your doctor or your most recent discharge papers from your doctor. Also, bring a copy of your pain plan if you have a pain management doctor.
◆    Bring a list of medications rather than rely on your own memory.
◆    Work cooperatively with the ER staff and don’t call negative attention to yourself. You may be in agonizing pain but the staff is first deciding whether you are exhibiting “drug seeking behavior,” so don’t give them any opportunity to decide wrong.
◆    If you have a rare condition or one that is frequently misunderstood or is thought not to cause pain, bring information about your condition. (I can’t tell you how many times people did that when I worked in the ER. We were grateful not to have to look it up.)
◆    Bring someone with you. This will help because it is hard to explain things when you are sick or in pain and they can help. They also can remember details for you.
◆    If possible, use the same ER as much as possible because doctors become suspicious when they discover visits to multiple hospitals (Hint: They call each other to say so!)
◆    Keep a folder handy with all your details written down so you don’t have to try to put it together in the midst of horrific pain.

Finally, if you feel you’ve been mistreated after your ER visit, please do at least three of these things:
◆    Write your story down.
◆    Contact the Medical Director of the ER during business hours.
◆    Contact the Medical Director of the hospital during business hours.
◆    Contact the Board of Medical Examiners or licensing bureau for your state.
◆    Send your description of your visit, by snail mail letter to each of the people above and include a letter to the offending doctor as well. Who knows? He may see the light.
◆    One final note, after you are treated well, drop a short note to the ER and you can be sure it will be given to your doctor!!

Have you been treated well or badly by an ER? What’s your take?

Screen Shot 2015-08-23 at 4.30.12 PM

Published under Fair Use Act as Educational


 

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.

Subscribe to MeshTroubles.com to learn more about pelvic mesh. I’d like to hear from you 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 daywriter1@gmail.com.

 

Sciatica After Pelvic Mesh Surgery – Was It Misdiagnosed?

A 2007 medical literature review took a look at the relationship between sciatica and the female pelvis. While pelvic mesh surgery was not implicated, pelvic mesh had not been in use very long when the study was conducted and more research is needed. However, surgical mesh bladder slings and posterior repair kits have been implanted, sometimes surgically shredded and later removed since 1998 and should be considered when sciatica follows pelvic or abdominal surgery. This is today’s mesh trouble.

Sciatic nerve pain, or sciatica, is most often due to a bulging or herniated disc in your spine pinching your sciatic nerve but gynecological surgery can also be the culprit. The 2007 study found cases in which the cause was gynecological or obstetrical and trauma due to pelvic surgery was misdiagnosed as disc disease in two cases. Unfortunately, in the 127 cases, it took an average of 3.8 years for the gynecological connection to be discovered (in one case, it took an astounding 15 years). The proper diagnosis was crucial because misdiagnosis sometimes lead to unnecessary, unsuccessful, debilitating and distressful spine surgeries. (Other causes of sciatica include spine trauma, osterarthritis, degenerative disc disease, pregnancy, endometriosis, and spinal tumors.)

"Jack-Knife" position
The sacral plexus, where sciatica originates, is immediately next to the posterior pelvic wall, the internal iliac blood vessels, the ureters, and the sigmoid colon (last loop of colon) and the terminal ilieal coils of the small intestine. When posterior mesh is used, there is greater risk of injury to those structures.

During abdominal surgery, nerve injury is usually related to poor patient positioning, a nerve being cut during the procedure, or excessive pressure on the nerve by the surgeon, particularly when he/she is trying to control bleeding from the hypogastric vessels. The use of the “jack-knife” position for vaginal surgery can cause nerve injury if the body is hyperextended or legs are rotated outward excessively.

Jack-Knife position.

Jack-Knife position.

“Vaginal operations have occasionally been complicated by sciatic neurophathy, possibly because of stretching of the sciatic nerve rather than direct pressure.” Other causes include badly placed intermuscular, or IM, injections (into the sciatic nerve), constriction by scar tissue and damage by the chemicals in the injection.

The sciatic nerve is the longest nerve in your body, branching out from your lower back, moving through both buttocks and down through your legs to your feet and is responsible for the movement and feelings in your legs and feet. If it becomes compressed, injured or inflamed, it can cause intense sciatic nerve pain anywhere along its path. No two cases are alike.

Sciatica due to pelvic issues is often diagnosed. The diagnosis is made by listening to your entire story, and conducting physical and neurological exams of your pelvis, back and legs. Special tests include and electromyogram (EMG) and nerve conduction velocity tests. Xray, CT or specialized MRI’s can identify abnormalities and specialized views of the pelvis are necessary.

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Symptoms:
•    Unpleasant, painful, sensations from your back all the way down your leg to your foot, on one side or both.
•    Weakness, burning, numbness or tingling of the same area.

Treatment depends on the severity of your problems and any additional complications and includes physical therapy, chiropractic treatment, and exercises. You may also need to take tylenol (acetaminophen) or anti-inflammatory drugs. Some exercises that help include good posture, abdominal crunches, walking and swimming and careful attention to body mechanics while lifting.  Medications used to treat chronic nerve pain may also help.

Sciatica often goes away on its on after a period of rest and limited activities. Most people recover after 6 weeks but, for those who continue to suffer, this mesh trouble changes their life.

When You Can’t Sit Down, Might Just Be Pudendal Nerve Damage

Just can’t help but link to this song for today’s blog: Paul Revere and the Raiders’ “Can’t Sit Down.”

If you can’t sit down, it may be more serious than just that you’ve been listening to Rock ’n Roll, it may be that you have pudendal nerve damage. That problem may be your own trouble with pelvic mesh. Sitting down is one of the most basic functions of modern day life. We sit at work, during meals, while driving, going to the movies, using our computers, even reading to our children. It can be caused by bike riding (Cyclist’s Syndrome), repeated lifting, prolonged sitting or injury during pelvic surgery. Pudendal nerve injuries are common complaints of mesh that we hear about in support groups.

mesh is for badminton2

The pudendal nerve innervates areas around your perineum, anus, clitoris and the muscles you sit on. The pain you feel could be burning, stabbing, aching, or a loss of sensation. It can flare up from time to time or it can come quickly and stay for good—or it can come slowly and worsen over time.

Three categories of pudendal problems are pudendal neuralgia, PN, (pain along the course of the nerve due to inflammation), pudendal neuropathy (a diseased or injured nerve), and pudendal nerve entrapment, PNE, (associated with the nerve being tied down by the surrounding tissues).

Symptoms
•    Stinging, burning, stabbing, aching, knife-like pain, irritation, cramping, spasm, tightness, pins and needles, numbness, or hyper- sensitivity over your anal region, perineum, vulva or clitoris
•    Pain that worsens while sitting and improves while standing or walking
•    Lying down may or may not relieve the pain
•    Pain can be in one area or several, on one or both sides.
•    Problems with urination, defecation or sexual function
•    Increased pain after defecating

Each person’s symptoms are unique. A pudendal nerve entrapment (PNE) diagnosis can be made by listening to the patient’s description of the problem, physical exam, with a special MRI called a MRI neurogram of the pudendal nerves, or an ultrasound.
Pudendal nerve pain
Treatment: Medications such as custom made suppositories to relax your pelvic nerves and muscles may help. Physical therapy with gentle massage, accupuncture, pudendal nerve block guided by CT or ultrasound, caudal epidural injections, pulsed radio frequency ablation to the pudendal nerves, botox injections, spinal cord stimulation. Reference.

atrapamiento-nervio-pudendo

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.

Subscribe to MeshTroubles.com to learn more about pelvic mesh. I’d like to hear from you 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 daywriter1@gmail.com.

Groin Pain Left Behind By Pelvic Mesh – Genitofemoral Nerve Pain

If your pain is in your inner thigh, it may be your genitofemoral nerve causing the mesh trouble. Seventeen percent of surgical pelvic injuries found in one study involved an injury to the genitofemoral nerve. Commonly called, “genitofemoral neuralgia,” it occurs when this nerve is compressed or injured anywhere along its route during pelvic surgery, caused by either cutting or blunt pressure from retractors. The nerve innervates upper region of your inner thigh and part of your genitals.

1 Genitofemoral Pain

Your genitofemoral nerve originates from your L1 and L2 lumber nerve roots and then passes through your psoas major muscle and splits into two branches, the genital and femoral branches. Each (right and left) femoral branch travels through your inguinal ligament and ends at your inner thighs. Each genital branch runs its course through your inguinal canal and ends in your vaginal area. It also innervates your uterus.

Symptoms of genitofemoral nerve injury:
•    Burning pain and numbness in the lower region of abdomen radiating                         to inner upper thigh.
•    Pain is felt in labia majora in your pelvis.

Genitofemoral pain does not radiate as far as your knee. In certain positions the pain is felt more, such as when you extend your spine, so you may find yourself bending forward to relieve your pain. You may also experience the loss of sensation in your inner thigh and vagina as well.

Treatment: Mild damage to your  genitofemoral nerve can be treated with physical therapy, including stretching, deep tissue massage, and ultrasound. Avoid squatting or sitting for a long time to keep from aggravating your symptoms. Medication for pain and anti-inflammatory drugs may help. Nerve block has been found to be effective in some cases. Low intensity laser therapy has been found effective in most cases. More severe cases may require surgery to release the anterior division through the obturator canal.

Naturopaths recommend acupressure and acupuncture are other alternative modes, certain herbs such as lobelia, white sage, and valerian root, known to be effective in nerve disease.

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We will explore each of the nerve injuries on our list in upcoming blog posts at meshtroubles.com

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.

Subscribe to MeshTroubles.com to learn more about pelvic mesh. I’d like to hear from you 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 daywriter1@gmail.com.