Tag Archives: UTI bladder problems

10 Facts of Life for the Pelvic Mesh Newbie

  1. Mesh injuries and illness rates are much higher than medical studies show. Most published research favorable to mesh is funded by the manufacturer.
  2. Mesh is mesh. There is no “old mesh.” It is all that same thing with minor changes in shape or route. Polypropylene is just plain damaging to human tissue.
  3. The pelvis is a perilous place to conduct surgery. Even human or pig mesh or simple suture repairs can cause problems–but not as frequently as pelvic mesh.
  4. Your new pelvic problem is very likely caused by the mesh itself. Fearing litigation and believing the manufacturer’s advertising, doctors are reluctant to blame the device.
  5. Some pain and infection get better with removal–but not all.

    KIM Mesh

  6. Very few surgeons know how to take mesh out, so they fake it with partial revision surgeries that lead to new complications and more surgeries. More surgeries = more scar tissue.
  7. There is no justice. There are almost no medical malpractice lawsuits anymore. There is no money in malpractice litigation for the lawyers since “Tort Reform” was enacted in all 50 states. Doctors and the AMA lobbied and paid for Tort Reform.
  8. About class actions, there is no money for a lawyer who represents a patient with pain, infection, nerve damage, etc. because recent settlements are based on the number of surgeries you’ve had and not how sick or injured you are.
  9. Don’t wait for legal recourse before finding a competent surgeon. Consider crowd-funding to get well.
  10. You shouldn’t have to do this alone. Join a mesh support group but keep a critical mind and don’t accept advice just because another person is adamant in their post Be careful. Be sure to double check any answers you receive. A good internet search can provide your best education.

 


Peggy Day is working on a book to combine all these stories. This is an excerpt from Pelvis in Flames: Your Pelvic Mesh Owner’s Guide. Your input is welcome to help make Pelvis in Flames the book you need to read.

If you’d like to join an online support group and learn about erosion, partial removals, surgeons, or just find out that you are not alone, 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.

Australian Pelvic Mesh Survivor Group Position Statement – Carolyn Chisholm

By Carolyn Chisholm
June 5, 2017, Perth

I started the Australian Pelvic Mesh Support Group 2.5 years ago to find an empathetic and ethical surgeon who would invite Dr. Dionysios Veronikis to Australia to remove the mesh devices from women that no other surgeons in Australia are able to remove. Veronikis can remove more prolapse mesh from the pelvis and legs than any surgeon here because he has invented equipment to reach deep into the pelvis that other surgeons can not reach. He has also removed more than 2000 meshes.

It is important that you know what the group is about. It is about Dr Veronikis; about him coming here. It is about empathy and support for women who are suffering. We do not like mesh or support mesh. We are anti mesh. We do not believe in partial removals. We believe in full removal wherever possible.

We have found a surgeon in Sydney who is a gynecology pain specialist and pudendal nerve specialist. The pudendal nerve is the area around the groin that so many women are having complications with who have mesh; when this nerve is damaged it is extremely painful and affects the groin and legs, the vulva, the vagina, the rectum, and lower back. It really is a specialised area that implanting surgeons seem to know very little about and yet it is the main problem with mesh-injured women. Proving that [to other gynecologists] though is another issue.

This surgeon has agreed to invite Dr. Veronikis to Australia to remove the large prolaspe meshes from women that other surgeons in Australia refuse to or cannot do. Dr. Veronikis is the surgeon I flew to St Louis to see to have my stress incontinence tape fully removed. This is a momentous step for mesh injured women having Veronikis come here because we have been searching for 2.5 years to find a surgeon who will agree to do this. The surgeon here has already flown to America recently to meet Dr. Veronikis and receive training in mesh removal of the smaller tapes/meshes for incontinence. However, the larger prolapse meshes are very complicated and dangerous to remove and it takes a special surgeon to remove these.
Dr. Veronikis designed his own removal equipment and instruments and patented them himself so he can get deep into the pelvis to remove the mesh. No other surgeon in the world has this equipment. However, now Australia will have it because there are two hospitals in Sydney who are paying for the equipment. The Sydney surgeon is flying back to the USA in a few weeks time to have more discussions with Veronikis about equipment and training nurses in theatre.

This is the beginning of a massive breakthrough for mesh injured women and now we have some hope. It is a huge undertaking and it has involved a hell of a lot of work from numerous people including mesh injured women and we have some fantastic, highly qualified and highly regarded medical staff backing us.

Women from all over Australia are booking in to have removal surgery with Dr. Veronikis in Sydney when he comes. Unfortunately the RANZCOG (Royal Australian and New Zealand College of Obstetricians and Gynaecologists)
stand by their statement that partial removal is an acceptable form of treatment. They refuse to get on board with full removal procedures, even though Dr. Veronikis has removed more than 2000 mesh devices and travels around the world speaking about the pain associated with mesh and that when pain occurs the only way is to remove all of the mesh. The women in the Austrailian support group do not agree with the RANZCOG about partial removal because every single woman who has had this procedure ends up with more complications and ends up going back into hospital for more surgery and they often end up with infections that don’t go away and they live on antibiotics.

The Australian Pelvic Mesh Support Group is in the process of becoming a not for profit organisation so we can apply for funding to help mesh injured women Australia wide who need pain specialists, the correct diagnosis of mesh complications, psychological help and referrals to mesh removal surgeons which, at the moment, are very few and far between. The plan is to set up clinics in each city in Australia.

Caz Chisholm winning two awards for her advocacy work.

What is really important to distinguish is the prolapse meshes and the stress incontinence meshes. The prolapse meshes are in the high risk category whereas the stress incontinence meshes are still considered the gold standard even though there are no long term studies to prove it and RANZCOG state the clinical trials still need to be done for the SUI meshes, So this means that women are still guinea pigs otherwise why would they need the trials? I do know from a poll in our group that there are more women injured from stress incontinence meshes than prolapse meshes, possibly because more surgeons are implanting them these days since they have the “all clear” from RANZCOG.

I feel that the gynaecological associations have lost control of their gynaecologists and women are being implanted with mesh unnecessarily. Most GP’s know nothing about mesh complications and most gynae surgeons are sending women out the door telling them that their pain has nothing to do with the mesh. These surgeons don’t want to know anything about the complications that their implants have caused women. In fact I have read stories in the group about surgeons being rude to the women, some shout at them, some get angry with them, simply because the woman is presenting with pain and complications. They are turning their backs on the women. It is diabolical what is happening. This is why the Australian Pelvic Mesh Support Group needs to set up clinics Australia wide and find ethical and empathetic surgeons who want to be trained in full removal and to find the right medical professionals that really want to listen to these women, to believe them and not turn them away.

It is a very specialised issue and needs to be addressed immediately.
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    • 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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What Does a Bladder Really Look Like? Pelvic Mesh Implants

The bladder and urethra play a key role in pelvic organ prolapse and stress urinary incontinence. The most frequent cause of SUI is early bladder prolapse.

Figure 1. Illustration from patent application 2004. “u” is called a urethra. “B” is called a bladder.

As we age, the bladder loses support from neighboring fascia, muscles, ligaments and tendons and drops down, folding itself over supporting structures underneath (and over slings or sutures after surgeries). The folding narrows the outlet or urethra. Imagine you are holding a rolled up throw rug under one arm to carry it, it folds over and the hole inside it narrows and flattens.

Figure 2. Offset oil funnel.

Mesh illustrations in journal articles, public information handouts, and patent applications are inaccurately show the urethra as a straw-shaped tube through which urine flows. See example in Figure 1. It is really a sideways funnel — “offset” like the photo of the oil funnel in Figure 2. Figure 3. is a healthy bladder.

Figure 3. Healthy non-prolapsing bladder.

How in the world did the patent office and the FDA clear this product, a mesh tape with wing-like extensions for treating female urinary incontinence US 8047982 B2, when the illustration clearly shows a tube and the device is designed to fit a straight tube?

It is no wonder patients become confused.

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    • 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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Specialized MRI and 3D Ultrasound See Mesh – CT Can’t

Too many surgeons are sending patients to have a CT (Cat Scan) and,  when the radiologist says he/she can’t see mesh, tell the patient the mesh must have disappeared or dissolved when a CT cannot identify mesh. Plastic mesh does not dissolve. Sadly too many patients have their pain disrespected or disregarded when the problem is the doctor’s. Only specialized 3D Ultrasound with the right technician and radiologist (more on this coming in another blog soon) and specialized MRI’s with the skills to see it and read it can identify mesh.
Here is a graphic, courtesy of www.scbtmr.org that you can print out an take to your doctor.

MRI to find mesh

How to see mesh with an MRI

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It’s the Polypropylene, Margaret. Not Fit For Humans

“For the want of a nail the shoe was lost,
For the want of a shoe the horse was lost,
For the want of a horse the rider was lost,
For the want of a rider the battle was lost,
For the want of a battle the kingdom was lost,
And all for the want of a horseshoe-nail.” Benjamin Franklin

Polypropylene has been found to be responsible for more deaths than just mesh patients as a recent examination of MAUDE reports to the FDA reveals. Meanwhile the plastic surgical mesh continues to be sold to patients.

The FDA’s recent announcement that it would reclassify only one application for pelvic mesh is a disaster for anyone wanting to do no harm because in its statement the agency promoted the use of synthetic surgical mesh for other pelvic applications. The only way to protect women from harm and avoid severe and devastating complications is to pressure the FDA to take all synthetic surgical mesh off the market—for good. A failure rate of forty percent (between 37.8 and 44.2%) and an erosion rate of 41.5% percent (see Figure 1. Lee, SY) represents an unacceptable iatrogenic mass casualty no matter how you toss the dice. It’s not the application (vaginal vs abdominal) or the surgical technique that’s harming many thousands of patients, it’s the material itself: the polypropylene.

Screen Shot 2016-01-15 at 8.44.26 AM

Polypropylene begins its life as crude oil, like any plastic product. Polypropylene is made up of a combination of ingredients combined to produce a product that will resist temperature change and keep its tensile strength when shaped into strands. Microscopically, polypropylene is a polymer—a large molecule composed of many repeating subunits. When polypropylene is stretched into a fiber, its strength is dependent on the quality of ingredients, the width of the strand, and the shape the strand.

438px-Polypropylene_tacticity.svg

Polypropylene Chain

Polypropylene is a favorite child of plastics scientists for containers, automobile parts, rugs, and countless other applications often illustrated on this blog. Patients are told the device is inert, completely safe, does not react with the body yet, it is the same material that is used to make thousands of household 81YYBL4yzwL._SY355_products, like scouring pads. Imagine taking Scotch-Brite Scrub pad and stuffing it into your most private spot.

Polypropylene reactions: Although marketers call mesh inert, when polypropylene materials come in contact with human tissue, both sides of the interchange suffer in very dramatic ways. Plastic mesh reacts, degrades, shrinks, curls, rolls, or migrates in a woman’s body. The human host is vulnerable to allergic reactions, foreign body responses, organ injury and migration of the material. If a patient reacts badly, she is in an alarming predicament: it is nearly impossible to take pelvic mesh out.

Allergic reactions to polypropylene are said to be rare and it is nearly impossible to predict who will react. Allergists disagree on what testing method to use to diagnose an allergy to polypropylene. Foreign body responses are much more common. A few pathologists took a look at hernia mesh and all of the samples they examined demonstrated rejection responses.

POLY IS FOR COAXIAL CABLESAlthough allergists believe that polypropylene carried a low allergic response, they say the longer it is left in the body, the more likely a reaction will occur. The skin is said to spit out a suture sometimes but it is nearly impossible for a body to spit out pelvic mesh.

The same material used in transvaginal mesh was once declared unfit for the human body. In 2013, lawyers uncovered emails showing that CRBard, tried to deny the company knew it was unfit until prosecution lawyers forced them to divulge secret company emails. On Thursday this week, Mostlyn Law filed an injunction against Boston Scientific alleging the corporation smuggled a resin which it added to pelvic mesh products between 2011 and 2012.

•∞•

Recently, I looked at who died from mesh and tripped onto a little known fact–one polypropylene suture, Prolene, was involved in one tenth of the deaths from Ethicon Corporation products—a quarter of all suture-related deaths reported to MedWatch. Over the past decade, Prolene failures were found in 39 of 417 Ethicon product deaths yet the FDA never warned the public about the suture and there is no evidence that the agency is even aware of the problem. MAUDE event descriptions characterized failures leading to deaths from breaks in the suture or knots which unraveled. Reading the stories, I could only imagine the surgeon’s umbrage. After many hours of high-risk surgery where he carefully applied his many years of training and masterful skills to save his patient’s life, he lost his patient—through no fault of his own. A piece of polypropylene suture broke or failed. “All for the want of a nail.”

Prolene maude deaths

Until polypropylene is removed from all medical devices, sadly, women and men will continue to suffer and die.

•∞•

Peggy Day is working on a book to combine all these stories. She welcomes any input you may have.

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.




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





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.

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.

Polypropylene speed bump copy

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.

 

Kink In The Works – Mesh-Related Urinary Retention

If you’ve ever bent your straw and tried to keep sipping your drink anyway, even though you hate the way your delicious milkshake comes up in dribs and drabs, fits and starts, you can imagine what is happening to your urethra when you have mesh-related urinary retention. It is an extremely painful condition and, if it is left untreated, it can cause extensive damage to your kidneys and urinary tract. Yet another mesh trouble.

“I really miss the way I used to “tinkle!” When I had to go, I could sit down and have a good, steady flow that came out fast. And I would be done. Now, I can’t seem to get it out like I used to. It’s almost like an unsatisfying feeling. I have the urge, but it won’t come out right. And I need to stand up and squat over the toilet to get the last part out.
It seems I always have to urinate now…the more I push, the less it flows.”

“I really don’t enjoy urinating anymore! Before, it was such a relief to go to the bathroom! Now, it’s annoying.”

“I have trouble with pain while walking and sitting.”

“Ever since the sub-urethral sling I have had some voiding dysfunction.”

“I saw a really good urologist and he said he would never have used the sling I got and it was a ‘little’ tight. This has caused me lots of pain, some erosion, etc. He recommended removal for me.” – personal accounts

The women above can describe what urinary retention due to bladder mesh better than any medical author. The problem lies in the very design of the transobturator tape. Surgeons are human and human skills vary. No two human pelvis’s are shape alike and fitting one product to all means that some slings will be placed so tight they squeeze off the flow of urine. One study found 3.7 percent of mesh implants result in urinary retention requiring additional surgeries.

Why? A transbobturator tape (TOT or TVT-O) is inserted by hanging polypropylene woven mesh like a hammock— not too tight and not too loose—with exactly the right tension. Trouble is, the patient is asleep when she gets her implant and can’t say, “Ouch! A little too tight!” Or, “Can you loosen it up a bit?” Surgeons have to estimate how tight to make it using techniques that other surgeons have found successful or that they took a weekend course operating on an motionless cadaver. Even the surgeon’s handedness* affects the angle at which they punch the trocar through and how much tension gets applied to each side of the sling. By the time you wake up with that indubitable feeling that its too tight, it’s too late.

While your surgeon is stringing your hammock, you are tipped with your head down in a position you would not assume for a longer than a few minutes because all the blood rushes to your head. To put you in the Trendelenburg position, your sleeping body is placed on the operating table, your legs strapped in stirrups and your head is lowered as much as 30 degrees.

When you first stand up after surgery, the full weight of all the organs above push against the mesh sling below putting pressure on your urethra. If the sling is too tight, your urethra becomes pinched, or kinked. You are about to enter a personal learning curve of discovery–more than you ever wanted to know about urinary retention.

MESH IS NOT FOR BODIES 9

Retention is definitely not fun: Some women with retention are able to trickle their urine slowly, some have to finish emptying their bladders by standing up and bending forward, some must place their head below their knees, and others end up with catheters or urostomies. Imagine that.  You are forced to bow down in supplication, privately humiliated with every bathroom trip while the profiteers of the defective device you just received are sunning themselves on yachts on the Mediterranean. Even the surgeons who put in yours and now are refusing to say the mesh caused your problem, are sitting in the deck chairs.

Catheters: Some women cannot, no matter what they try, get their urine out—not being able to start a stream or to finish emptying due to the angle of the crimp in their urethras. Indwelling (Foley) catheters are often placed but the length of time they can be used is limited because they result in urinary tract infections nearly 100% of the time a few days time. Some women are taught to use intermittent cathaterization (IC) to empty their own bladders. Those smaller catheters are inserted and removed each time and can be rinsed and reused. Learning how to use them is extremely difficult and the inside of your urethra is extremely sensitive to damage and can swell causing more retention. Try laying down in the bathtub the first few times you insert one or lay on a shower curtain on your floor so you won’t get tired as you learn how to insert the catheter very slowly and carefully. Once you learn the shape of your own urethra, it’ll be easier.

Supra-pubic catheters and urostomy: In rare cases, catheters fail or the bladder is so distended that a catheter won’t work so a supra-pubic catheter is inserted. It is a simple surgical procedure where a small hole is cut above your pubic bone and a catheter is inserted to drain your urine until your urethra is healed. The amount of time it is left in varies from patient to patient. If the bladder or urethra is permanently damaged a major surgery is performed to drain urine from your kidneys through a small hole in your abdomen, a urostomy, or radical cystectomy.

Surgical repair: Urinary retention makes it necessary to undergo a battery of urodynamic tests and new sling implant recipients are often told to wait a few months to see if it will somehow magically stretch out. Mesh material is designed not to stretch and making a patient wait months ignores the amount of unimagined agony and personal distress that a tight sling causes. A urologist or uro-gynecologist often will perform a “ligation” or “revision” in which they cut the sling in two. We do not recommended revisions or partial removals as they allow the two ends of the sling to snap away, shred, and grab onto any healthy tissue around—leading to future revision or very long and complicated removal surgeries.

Despite the fact that waiting only prolongs your agony, in order to keep you from having more complications, mesh troubles, be sure to learn all you can about the difference between revisions and complete removals before deciding who will treat you and what procedures to agree to.

More Links:
The Urinary Retention Guide    
http://www.retentionurinary.com/acute.html

About Urinary Retention
    http://www.medtronic.com/your-health/urinary-retention/index.htm
Urologic Emergencies
    http://www.urologychannel.com/emergencies/acute.shtml
Inability to Urinate
    http://www.emedicinehealth.com/inability_to_urinate/article_em.htm

*You are more likely to be injured on the side opposite your surgeon’s dominant hand.