Tag Archives: Painful Sex

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

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Stages of healing from sex abuse pg 2

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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.





26 Pelvic Mesh Complications Your Doc Never Mentioned

Welcome to the Pelvic Mesh Owner’s Guide! This page is like a Table of Contents.

Over 4.2 million women have the implants and a quarter to a third of them suffer debilitating complications while doctors say, “It’s not the mesh.” The FDA warned in both 2008 and 2011 that complications are serious. Too many women are finding out they were right all along, it is the mesh. 

If you’re having trouble with mesh, here is a list of 26 complications in the Pelvic Mesh Owner’s Guide. Sign up for updates to learn more and take the first step on your healing journey.

POLY IS FOR CABLES copy

26 Mesh Complications Your Doctor Never Warned You About:

1) Intractable Pain (pain that doesn’t go away) – Some people wake up from implant surgery knowing something is wrong. It is too tight or the pain is beyond measuring. Part 1 talks about the post operative pain from pelvic mesh & Part 2 is one woman’s journey with pelvic mesh pain.

2) Excessive BleedingBleeding happens but when is it too much? When to call the doctor? How to regain strength after heavy bleeding

3) Urinary tract infection, Kidney infection – Urinary tract infections are serious health-risks and can involve the bladder and kidney. When mesh is stuck in the bladder it continually irritates the bladder until it is removed surgically. Learn how to prevent UTIs and test yourself at home and to distinguish a bladder infection from a kidney infection.

     4) Wound infectionsA bladder sling can act like a petri dish harboring and incubating strong, sometimes drug-resistant bacteria. Left undiagnosed, they can lead to a delay in wound healing, even open up wide and deep surgical wounds and putting your life at risk.

5) Bladder injuryA slip of the knife, a puncture from an ice-pick like trocar, sling pulled so tight that it cuts the bladder. A bladder injury is one of the most difficult to repair. One study says it happens 10% of the time, another say 75%!

6) Bowel InjuryWhen a part of the bowel is nicked, fecal matter seeps into the interior of the body, when it the diagnosis is delayed or completely missed, patients become extremely ill.

7) Fistula (a hole between two organs) – Imagine your urine draining out of your vagina or your stool coming out. Fistula is all to common and deeply embarrassing for women.

8) Wound Opening Up After Stitches(also called dehiscence) – You think your surgery is healing and you are trying to get back on your feet and back to normal. Then your wound starts to open up. Dehiscence delays healing for a very long time.

9) Erosion – (also called exposure, extrusion or protrusion) As many as one patient in three experiences erosion from mesh. Would you agree to mesh if you were told the odds that you wouldn’t enjoy sex ever again were one in three?

10) Incontinence “I sneeze, I pee.”The odds that mesh surgery won’t cure your incontinence is the same as other surgical repairs: one in three.

11) Urinary Retention “I can’t pee right.”A mesh that is implanted too tight can slow down or stop your urine stream for about four percent of patients. Why does your surgeons “handedness” (right- or left-handed) affect your outcome?

12) Dyspareunia – pain during sexual intercourse One study found 26% of women found sex too painful after mesh surgery.

13) Multiple surgeriesWhen things go wrong, often the solution is another surgery and another. Some women have had over a dozen surgeries to correct mesh complications. More surgery = more scarring.

14) Vaginal scarring/shrinkage – Vaginal scarring: one of the most emotionally and physically difficult problems to heal.

15) Emotional DamageNaturally, an injury to a woman’s re-creative center causes emotional pain but can we allow doctors to blame the women?

16) Neuro-muscular problems – nerve damageStinging, burning, pins-and-needles, numbness all are signs of nerve damage. Even the way your body was positioned during surgery can cause nerve damage.

17) Obturator Nerve – Symptoms in your mid-thighs (saddle region).

18) Ilioinguinal/iliohypogastric Nerve – Symptoms in your pubic region.

19) Genitofemoral Nerve – Symptoms in your inner groin.

20) Femoral Nerve – Symptoms in your outer thighs

21) Pudendal Nerve Entrapment – Symptoms in your “sit spot.”

22) Fibular Neuropathy – Symptoms on the outside lower legs

23) Saphenous Nerve – Symptoms on your inner lower legs

24) Piriformis Syndrome – Symptoms across your buttocks.

25) Sciatica – Symptoms all the way down your leg.

26) Peripheral Neuropathy – Symptoms from the bottom of your feet and up your legs, even your hands can be involved.

MESH IS NOT FOR BODIES 2


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.

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?

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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.

 

You’re On My Last Nerve, Doc! – Neuromuscular Mesh Trouble

If you’ve ever had your leg go to sleep, you know what neural pain and numbness feels like. There are so many nerves in the pelvis and legs that I could write a 10,000 word blog and still miss some of them. Neuromuscular pain complications after pelvic surgery are complicated and distressing, to say the least. It is a topic that we plan to cover frequently in the future. For today, our will focus will be on nerve injuries caused by mesh surgery, whether it was from putting the mesh in, making revisions, or taking it out. One study found post operative nerve injury affects about 2 percent of pelvic surgery patients but this number may be missing a whole lot of people who don’t return to complain.

MESH is for butterflies 3

Nerve pain that does not get better within 6 months of surgery changes your life in the most miserable way. There is no way to get comfortable, moving hurts and resting hurts.  It is hard to get it off your mind, especially when you try to sleep. You find yourself having to learn new ways to cope. Treatment is fraught with trial and errors.

While you are having pelvic surgery, your nerves are in danger for several reasons. First, they can be ligated (cut), either accidentally or intentionally. Also, a nerve can become compressed or stretched by the way your body is positioned for surgery (see photos), or when instruments like retractors or clamps are used incorrectly, or after a blood clot develops. Lastly, after the surgery, swelling and inflammation can injure your nerves. It is called post surgery inflammatory neuropathy.

hips flexed Trendelenberg arm stretched

Pain, paresthesias (“pins and needles,” burning, tingling, a feeling like there is a cotton sheet over your skin, numbness), loss of sensation and weakness are the most common feelings you have when you have a nerve injury.

Ten common mesh surgery nerve injuries involve:
•    Obturator Nerve
•    Ilioinguinal/iliohypogastric Nerve
•    Genitofemoral Nerve
•    Femoral Nerve
•    Pudendal Nerve Entrapment
•    Common Fibular Nerve
•    Sapenous Nerve
•    Piriformis Syndrome
•    Sciatica
•    Fibular Neuropathy
•    Peripheral Neuropathy

 

ann-surg-results_ILLU120912-2

Some patients have more than one nerve injury. One even called hers the “mesh trifecta: sciatica, obturator and pudendal nerve damage.”

Look for your nerve injury in our drawings. If this helped you, please let us know. What else would you like to learn about? PelvicMeshOwnersGuide

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.

Signing Up For Just One Surgery With Pelvic Mesh?

Imagine this: Two women had tree branches fall across their homes causing major damage. Both trees did the most damage to the kitchen. Cindy Lu hires the guys who promises to get the job done the fastest for the least money. Her contractor comes in one day, and chops out the middle of the branch and cleans up the mess on her kitchen floor and replaces her kitchen faucet so it will run. He gets the job done in less than a day. Karen hires a more experienced contractor who takes out the entire branch and repairs all her plumbing, appliances and replaces her furniture and cleans up every tiny piece of bark or wood chip. It takes several days. He comes back later on and fixes the broken walls, windows and doors and returns her home to as close to pre-storm conditions as possible.

Which contractor would you hire?

This is an analogy to what happens when pelvic mesh goes bad. The surgeon who chips away at pelvic mesh, one eroded bit at a time, sets up a patient for multiple surgeries— today’s mesh trouble. Recently, Linda Gross won over 11 million dollars at trial after 18 surgeries to repair erosion, scarring, and tissue damage from a Gynecare Prolift pelvic sling. Surgeries performed after the pelvic mesh implant correct erosion, new or continued incontinence, difficulty urinating, infections, scar tissue, pain, deheisance, or fistulae. Women experiencing generalized symptoms they attribute to mesh opt for removals as well and report an improvement in their symptoms.

MESH IS FOR LAUNDRY

Synthetic surgical pelvic mesh was first thought to be faster, easier and better than traditional repairs like culpopexy and porcine and native tissue sling repairs. Newer research says it  just wasn’t true.  In a 2013 review, authors concluded that, even though sacral colpopexy had a longer operation time: “the sacral colpopexy had a higher success rate on examination and lower reoperation rate than high vaginal uterosacral suspension and transvaginal polypropylene mesh.”

Mesh removal is risky business due its faulty design. Absent-minded scientists have been accused of not stepping back and looking at the “big picture” ever since Thales, the Greek mathematician, looked up at the stars so often that he fell down a well. Designers of pelvic mesh imagined they found the best thing since the flat turret lathe or bifocal eyeglasses. It was so perfect, they must have thought, nobody would ever want to remove it.

It is an interesting observation that more doctors are prone to diagnose only what they can see—on your body, an x-ray, in a lab report then by the patient’s description of her problems. Headaches, backaches and now pelvic pain are the least recognized and treated medical complaints today. Until the “BLUE sh*t” (as Johnson & Johnson execs called Gynecare mesh in a secret email) could actually be seen by the doctors, women’s complaints were ignored. If they got an answer from their doctors, they were advised to have it snipped, dissected, ligated, trimmed or revised. When the mesh kept sneaking back, surgeons removed more little bits.

It takes a highly skilled surgeon like Dr. Shlomo Raz at UCLA to remove all of the mesh, including the anchors (secured ends).  The few surgeons who do remove the mesh in its entirety complain that removing all of shards of mesh from healthy human flesh is like getting bubblegum out of hair.

Dr. Dionysios Veronikis of St. Louis, MO invented a surgical instrument that  dissects the mesh away from the healthy tissue without cutting surrounding structures. He finds one end of the mesh and then carefully cuts, moving his instrument forward until it frees up the entire sling in one piece. It is hours and hours of painstaking work and healing from the procedure takes a long time.

Once mesh is removed, more surgeries are often needed to revise the damage left behind and fix structural problems. Complications, like bleeding, infection, and nerve damage, from mesh removal surgery are common. After finally going through removal surgery, 87% said they would never have had the artificial mesh implant in the first place, if they had only known. If you’ve not yet had an implant, you are one of the lucky ones because, now that there is more research and information is available on the net–mesh does not appear to be easier or better. Many, if not most, doctors are reverting to traditional fixes. You can save yourself a boatload of trouble by finding a surgeon who can repair your problem without mesh.

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.

6 Personal Stories: Mesh Patients Are Not Mental Patients

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.

tightwire net copy

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.

MESH INFB Man Woman

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.

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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.

If you’d like to join an online support group and learn about mesh problems, 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.

 

Vaginal Scars A Tough Problem With Mesh

Were you told a bladder sling is an “easy” solution to a leaky, overactive bladder or pelvic organ prolapse? Easy for the surgeon, maybe, but not so easy for thousands of women. Today’s story about mesh trouble is about vaginal scarring, which can make sexual intercourse difficult, even impossible, cause deformities and increase pain.

Scar tissue, made of collagen, a fibrous tissue that replaces normal tissue after any injury and can adhere to skin, muscle, or connective tissue. It pulls on the surrounding tissue, making it taut and restricting blood flow. It causes pain when it impinges on nerves or restricts the flow of oxygen-carrying blood to an area. Merely cutting the vagina open and sewing it shut in order to implant mesh leaves scarring—adding polypropylene mesh separates the healthy tissues, causing it to struggle to heal and leaving more damage behind.

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Anatomy of a vaginal scar: Even though plastic mesh has been implanted since 1998, scientists really don’t know what they are doing to your body, writing in 2013: “Meshes are widely used in prolapse surgeries to improve anatomical outcomes with little knowledge of the impact on the vagina. Like all organs in the body, the vagina is comprised of several protective layers: adventitia, subepithelium, and smooth muscle layers. Disrupting those important tissues causes scarring. The tissue surrounding the vaginal consists of key structural proteins: collagen, elastin and smooth muscle myosin. These help the vagina to move, stretch and maintain support for its own structure. The introduction of  surgical mesh tho those proteins has the potential to send them into chaos. The more pliable the mesh, the less disorganization occurs in the protective layers. Softer meshes have been recently introduced but they continue to elicit a foreign body response (rejection activity) and encourage thinning of the protective environment which can lead to vaginal erosion.  The 2013 study reported: “Possible mechanisms include the innate immune response and chronic microinjury from mesh micromotion.”

Treatment: Some doctors tell patients that if there is no pain, no dehiscence, no erosion, there will be no treatment. For women who have endured many surgeries trying to relieve mesh comlications, scarring is an enormous issue.

There are a number of treatments available. If the scar is due to infection, antibiotics can reduce infection and inflammation. Estrogen cream and pessaries can improve blood flow and nerve supply to your vagina and promote healthy healing.

The scar can be taken out and the area sewn closed again with newer and smaller sutures—like those used in plastic surgery. Lasers can be used in small areas to dissolve the abnormal tissue and some surgeons combine both modalities.

Physical therapy (PT) can make the tissue more flexible by massaging it or applying ultrasound. Scar tissue massage can be extremely painful and re-traumatizing. Some women cannot tolerate it. For those who can, many report that after months, they find it helps lessen scars.

If you’d like to join an online support group and learn about mesh problems, 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.

 

Pelvic Mesh -> Pain Part 2. A Personal Story

Thank you to Martina Lopez (not her real name) who generously offered to allow me to publish her story (with a little editing) about her battle with pelvic pain:

“I heard a Nigerian-American woman, Chimamanda Ngozi Adichie, say in a speech, that Americans talk about pain differently from Nigerians. Americans, she said, have an expectation that pain can be anathema [something you absolutely cannot stand or you ban from your life]. In Nigeria, she said, pain is expected and nurses aren’t solicitous of patients who complain about it. It lead me to think about how my own journey with pelvic pain has changed my expectations about pain.

“Starting out using narcotics was out of the question for me by the time I was implanted with a bladder sling. I had some very bad reactions to them and a duodenal ulcer meant that all NSAIDs [non-steroidal anti-inflammatory drugs] were out. I was left with Tylenol at the same time when high warnings about  liver and kidneys damage came out. I tried physical therapy but one visit was enough to send me running for the hills–it was not for me.

“I saw a Psychologist/Pain Specialist who did not prescribe medication but who taught me not to let my mind run from the pain but to turn into it and pay attention to it. He said to learn about its qualities, locations, movements, and what made it better and what made it worse. Doing this was extremely difficult because I was changing my lifetime of attitudes about pain. It took a few months but having someone to report my discoveries about my pain to really helped. I learned there was one position I could put my body into that eased the pain up a bit and discovered that just knowing I could get into it helped me. Unfortunately, the only position that worked was in deep water so I had to wait until I found a pool to get into it. I have get into the water, lay on my back, drop one leg down and let the other stay floating near the surface. Afterward I did a few very slow and gentle stretches in the water. This routine acted like WD-40 on my pain and could help for almost 24 hours.

“The pain specialist taught me not to look for the pain to go completely way but to learn how to make it easier. I had to figure out what things set me up for another attack of severe pain. For example, I cannot sit straight up for more than 2 hours or I will feel an intensity of pain for 2 days. Walking, resting, soaking all help my pain and allow me to get some exercise.

“There is just no way to avoid every single emotional distress in my life and I know stress increases pain. When emotional stress happens, I need to double down on my pain-relieving strategies.

“It’s been a long time and the pain has changed but never goes away completely. I continue to respect it. I take small doses of Tylenol for the hard times and on a “bad pain day”–when the pain makes every fiber in my entire body scream out–I make myself tough it through until about 9 at night and then I take one eighth of a dose of a narcotic pain killer along with the Tylenol and go to bed.”
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If you’d like to join an online support group and learn about pain, 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.

Pelvic Mesh -> Pelvic Pain Part 1.

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.
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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.

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.

(Part 2. Personal Story of Pelvic Pain.)