Tag Archives: Bladder Infections

This is Why You Hurt with Mesh Inside by Stacy Dean Seymour

Today’s blog is by a guest host: Stacy Dean Seymour

Why we hurt?
The anchors are thread through the sacrospinous ligament that parallels the pudendal nerve and branches. (Nerve damage) They are anchored with a grommet on both sides of pelvis. This is why you have pelvic pain, hip pain and every pain, as well as lower back pain. Then two more needles are thread through blindly ( by touch and expert: cough cough) to both sides of obturator foramen. This is why you are unable to sit, your hips are killing and your bum feels like glass is in it.

And as time goes by- providing you didn’t wake up in the PACU hanging from the ceiling saying “WTF” the mesh tightens as you heal, it calcifies like hard melted plastic, and or when you heal your body heals from the inside out and eventually rejects it and or begins the protrusion into your orifices. Your bodies autoimmune response kicks in immediately and produces killer cells-that begins another cascade of immuno response! I can’t sleep tonight and saw a few new people and took my nursing knowledge, research and personal experience of WTF happened to me. I hope this helps and sometimes visualizing is the best way to understand a process. I wish you all well and hope we all can find peace in some shape or form. – Stacy Dean Seymour

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Why So Many Deaths From Monarc Slings? Pelvic Mesh Disasters

The FDA received 193 reports of death after Monarc Subfacial Hammock placements—by far the highest number for a specific brand of pelvic mesh. The FDA MAUDE system admits their reports are notoriously unreliable for accurate statistics.  It isn’t inconceivable that the number is nearer to thousands because the Government Accounted Office estimated only about 1% of complications are reported. (Physicians aren’t mandated to report illnesses, deaths, or injuries.) If the one percent statistic is accurate, then 19,300 deaths have occurred. Given that 4.5 million women across the globe had pelvic mesh implants, it is entirely possible.

With the FDA’s blessings, American Medical Systems rolled out the Monarc in 2005. The half-inch wide strip of loosely-knitted, clear polypropylene monofilament sling came with two stainless steel curved needle passers with plastic-handles that looked like grappling hooks. The top of each passer is intended to grab the ends of the sling and pull it through the vagina and obturator membrane. The sling assembly also included two plastic insertion sheaths attached to the mesh and removed after placement. An absorbable tensioning suture, threaded lengthwise through the mesh, allowed the surgeon to adjust the tension before closing the surgery. AMS declared the mesh would remain in the body permanently.

Illustration used under Fair Use Act for Educational Purposes

AMS’s illustration (and it’s understanding of female anatomy?) of the obturator was pictured as a vacant space with no purpose, but in reality, it is flush with blood vessels and nerves supplying the bladder, vagina, vulva, and hips. Those were more vulnerable to injury than AMS acknowledged.

On October 15, 2014, the FDA issued a recall for Monarc sling passers along with other AMS products due to compromised sterile packaging.

If the sterile packaging was the only problem, the deaths might be predominantly due to infection, but the MAUDE death reports include autoimmune diseases like diabetes and several types of cancer (e.g., lymphoma, large and small cell, and lung cancers).

Jenny Wallace (pseudonym) traded her prolapsing bladder for urinary tract infections, pain, infection, vaginal scarring, urinary problems, adhesions, recurrence, emotional distress, apical mesh erosion, extruded vaginal mesh, and bleeding. She was implanted with a Monarc in 2008. She underwent several partial removals and, on October 24, 2010, died of metastatic small cell cancer.

More research needs to be done to determine why Monarc has so many more death reports than other products and to quantify types of death. But, for now, if you have a Monarc, you might consider having it removed by a competent removal surgeon. Fortunately, AMS no longer sells slings.

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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, join my group, Surgical Mesh or 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.

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Monarc™ Subfascial Hammock

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.

 


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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.

    • 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 any slings or sutures in the pelvis). 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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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, join my group, Surgical Mesh or 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..

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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


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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, join my group, Surgical Mesh or 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..

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Handling a Trip To The Emergency Room With a Mesh Problem

Once upon a time, a more experienced emergency room nurse than me said doctors treat patients with headache and backache badly 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.

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Published under Fair Use Act as Educational

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.

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…
◆    Be as personable as you can given your condition.

Maslow’s Hierarchy of Needs

⁃    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 in commonly understood terms.
⁃    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.

Another blogger addressed “ER visits” for chronic pain sufferers:
◆    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, ir makes it clear you are 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.
◆    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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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, join my group, Surgical Mesh or 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..

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The Pelvis in Flames – Autoimmune Diseases and Pelvic Mesh

Why does one woman instantly react to a plastic mesh implant and another not even notice it, at least for several years? Every body reacts to the polypropylene mesh because the mesh is biologically incompatible with human tissue. The level of bio-incompatibility  “determines the host’s inflammatory response, scar plate formation, tissue ingrowth, and subsequent mesh performance, including prosthetic compliance.” It may be a decade or so before some women experience rejection symptoms: the burning, constant gnawing like there is a fire inside, debilitating damage, erosions, infections, urinary troubles and more, because as the body changes as it ages.

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Polypropylene mesh was designed to provoke a chronic inflammatory response that varies from woman to woman; from mild to severe. The minute the synthetic mesh came in contact with your healthy tissue, the fire started. Your body’s immune response recognizes non-native citizens like bacteria, viruses, and toxins, a splinter, foreign substances, or a synthetic mesh implant and responds to antigens (proteins attached to the surface of cells, viruses, or bacteria) by initiating a fierce defense. However, no matter how much your body tries to reject the plastic mesh implant, it can’t because it is trapped in the structures of your pelvis.

Eventually your healthy immune response may become compromised and give way to autoimmune disease. Those same antibodies that are charged with protecting your body from foreign matter may begin to attack your body’s own proteins and tissues, thinking they are foreign. Although the problem in autoimmune disorders is the immune system, the symptoms are displayed by the organ that is under attack. Essentially, autoimmune disease is an immune system with gone wild and turning on itself.

In the general population autoimmune disorders predominantly affect women and about three percent of the general population. More research is need to to determine how many mesh recipients have develMESH IF FOR FOODpolypropylene NETONROLLoped autoimmune diseases but, anecdotally, mesh victims who gather on the internet in groups of between 200 and a thousand participants connect the onset of an autoimmune process to the date of their mesh implant. Once a patient develops one autoimmune condition, the odds of developing another are greatly increased. Research about one autoimmune disease, celiac disease, showed that maintaining a gluten-free diet will dramatically reduce the number of antibodies in an affected child’s body. We recommend more research to determine if complete mesh removal will improve autoimmune symptoms.

Below is a list of autoimmune diseases found in the anecdotes of pelvic mesh owners:

Screen Shot 2015-08-18 at 4.24.38 PM

Do you have an autoimmune disease after a mesh transplant? What do you think?


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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, join my group, Surgical Mesh or 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..

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Multiple Surgeries: 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 problem. 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.

Did you know one study found 41% of mesh implant patients had to have at least one other surgery?

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 Veronikis, Una Lee in Seattle, and 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.

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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, join my group, Surgical Mesh or 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..

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Pelvic Mesh: Pelvic Pain, Part 2

“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 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 a 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 and go to bed.” – Martina Lopez

* Pseudonym
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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, join my group, Surgical Mesh or 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..

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“I’m (Still) Incontinent:” Forty Percent Mesh Surgery Failures

Doctors are saying that the nearly 100,000 mesh trouble lawsuits don’t mean the mesh is bad–it’s just that lawyers are greedy and “everybody is out for a buck,” and you need to believe them that synthetic surgical mesh is the gold standard. Women report that, as well as causing new mesh-related problems, more than up to forty percent of mesh surgeries fails to cure incontinence. Knowing that–a woman might choose not to have plastic mesh implant surgery.

Mesh is for Butterflies

“I had bladder sling surgery about a month ago and am actually having worse incontinence than I had before the surgery. I was diagnosed with stress incontinence before the surgery and had to wear a pad for leakage when I coughed or sneezed. Now I am wearing adult diapers because when I move from a sitting to a standing position,  all of the urine leaks out.”

“I had a hysterectomy and bladder sling surgery for a prolapse… I never leaked before having the surgery. Now I void every few minutes and leak constantly. The surgery was done robotically. If I knew this was going to happen I never would have had my bladder done.”

“All I can do is stand there with my bladder as tight as I can while I wet myself like a 2-year-old.”

“We found the solution by going to a urologist at Mayo Clinic in Scottsdale, AZ. I found that going to a clinic/Doctor that actually works in a team environment … was the answer. After the second surgery I am now at least back to where I was before all of this started. I do wear a diaper at night but during the day just a pantyliner. Try a different doctor and see what their assessment for your situation is.” For more read here.

Numbers: I know statistics are boring but bear with me here for just a bit. 565 women where asked if they were continent a year after they had slings put in, “How satisfied or dissatisfied are you with the result of bladder surgery related to urine leakage?”  their answers were from 55.8 to 62.2 percent “yes.”  That means or 37.8% to 44.2%  said “no.” In this study, only 15 women “required” new surgery although approximately 231, (4o%) women were still leaking. That just doesn’t seem like success to me. But then, I imagine the researchers were not crossing their legs tightly, avoiding standing up, changing poise very two hours, or trying to hide their Depends under bulky clothing as they questioned those women.
Here, I created a pie chart if you hate reading numbers in a paragraph as much as I do:

: graph
If we look at the same study more carefully, it calls into question whether urodynamic testing is a good measure of incontinence. When the machines were used to measure stress urinary incontinence, between 77.7 and 80.8 percent of women were fine yet when they themselves were asked, many more women said they were not. Here is another pie chart. If surgeons rely on the higher number for a “success” rate, more slings get sold. What the women actually experienced may be a better number to help guide you in making your decision about whether a mesh sling is worth the trouble.

Uro vs women

Handling incontinence is an major problem for anyone who would rather stay home than walk around smelling like a latrine. If your incontinence is so bad that changing position makes you gush, you’ll be paying close attention to how long it takes a drink of water or a cup of tea to make its way through your system and lowering your intake before going out in public. You’ll be taking baby wipes or cleaning cloths everywhere you go (in your over-sized purse), limiting your time out and avoiding social events. Be careful if you are drinking less because of the leaking because when your urine gets more concentrated, you are more vulnerable to urinary tract infections and your urine smells stronger.

Some women have had success with an injection of collagen for incontinence after sling surgery. Some end up with repeat surgeries—some even say they have three slings inside them. Before you have another surgery, think about finding another surgeon who may be more skilled in handling your problem and who does not implant mesh. While very few in number, there are surgeons who make repairs without using plastic surgical mesh and this blog will be publishing the names soon.

If you’d like to compare incontinence products, try this site.

In the study above, there were many complications found, especially nerve pain going down one leg and an inability to urinate normally.

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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, join my group, Surgical Mesh or 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..

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