MESH INJURY – “Spotlight Symptoms”

Hello Warriors;

Today, I’m starting a blog series called, “MESH INJURY – Spotlight Symptoms.”*

TVMI encounter an alarmingly typical and recurrent problem when advocating for and with mesh-injured patients. It goes something like this:

  1. Mesh-injured patient develops a disturbing symptom.
  2. Mesh-injured patient visits his/her PCP or a specialist to seek diagnosis and treatment.
  3. Physician performs a physical exam, and says something like, “I don’t know what that is,” or I’ve never seen anything like this [symptom].”
  4. Patient is confused and bewildered and asks if there are tests that could be done or another doctor or specialist who would know more about the symptom.
  5. Physician says, “No,” and doesn’t perform any diagnostics to find out the underlying cause of the symptom (environmental cause, disease process, injury, or infectious pathogen).
  6. Physician prescribes medicine to mask or alleviate symptom(s) (e.g. topical creams for rashes, antibiotics for a suspected infection, maybe some other pharmaceutical to control pain or discomfort, or even an invasive or non-invasive form of treatment).
  7. Patient goes home still symptomatic, with no diagnosis, and with one or more pharmaceutical or other treatments to consider, which may or may not work, since the UNDERLYING CAUSE or UNDERLYING PATHOLOGY, which caused the symptom to manifest, was never studied in depth by the treating physician.
  8. Patient goes home and follows pharmaceutical regimen or advice for treatment.
  9. Pharmaceuticals and treatments do not alleviate symptom(s). Symptom(s) continue.
  10. Patient is left untreated and without a next step.

Paternalistic-vs-Patient-CenteredOftentimes a physician will refer to a symptom as “idiopathic,” which in layman’s terms simply means, “Who knows where it came from?” There is a responsible use of this term, but I see it used irresponsibly too often.

Some diseases are generally agreed to be “of idiopathic origin,” because no one in science can definitively identify an underlying cause. In this case, “idiopathic” is often part of the name of the disease or syndrome itself. Some examples are:

  • Idiopathic Thrombocytopenic Purpura (sometimes called Acute or Chronic ITP) is a bleeding disorder, in which a patient has abnormally low blood platelets, and thus their blood does not properly clot.
  • Idiopathic Hemochromatosis – is another bleeding disorder, in which an abnormal and dangerous amount of iron accumulates in the body’s tissues or organs, including the liver and lungs.

Both disorders are life threatening if left untreated. These disorders present with SYMPTOMS, and when doctors invest in diagnostic procedures, these diagnostic procedures, coupled with symptoms, lead them to a diagnosis, which then leads to a treatment or even a cure.

A serious problem arises when physicians use the word “idiopathic” irresponsibly. In all cases, any particular symptom or cluster of symptoms do originate from some cause, from something, from somewhere, and any doctor who does not search for the underlying cause of a symptom is negligent. “I don’t know,” would be a more accurate physician response in this situation, however; “idiopathic” sounds so much more, you know, medical and stuff. Odd or uncommon symptoms can often co-occur, simultaneously with other more salient symptoms, and when viewed together as a whole, the underlying disease process in these cases, can be more obvious, leading to a higher chance of diagnosis, or a more rapid diagnosis, which then leads to the correct treatment, to the best of the physician’s actual knowledge.

Puzzled male shrugging wearing lab coat

But, what if a patient presents with an idiopathic symptom that does not have a common accompanying symptom or cluster of symptoms that is easily recognizable to an average physician? In my personal experience, this situation is when physicians can get a bit lazy with the use of  the term”idiopathic.”

“Of idiopathic origin” is so much more dignified on a patient’s chart than:

“I have no friggin’ idea, but it’s not my problem, so I gave the patient some samples.”

So, has your physician ever told you, “I’ve never seen that symptom,” or “Your symptom seems to be idiopathic and will most likely resolve on its own.”?

If so, I’d love to hear from you.

Have you had the experience I describe above?device-transvaginal-mesh-edit

If you have, what was the symptom?

Did you ever get to the bottom of it?

Did the physician suggest diagnostic testing, or did you ask for such if he/she did not?

Did you find your doctors to be helpful in assisting you as you continued to pursue a cause, or did you find that your doctor quietly excused himself from your care, and left you to find some other doctor who might help?

Tuesday we’ll talk about the first of many symptoms which are commonly seen in mesh-injured patients, but for which doctors often say there is no explanation or that physician seems to have no drive to find an explanation.

With this series of blogs, I hope to highlight some very common symptoms, for which mesh-injured patients are turned away, left with no medical solution to pursue. Let’s use our collective knowledge as a community to help one another and to help those who don’t understand the realities of ongoing mesh injury.


*I am not a doctor. This information is for education purposes only and is based on my personal experiences. If you have a symptom, please find a doctor who will help you identify and treat your symptoms.

“A Doctor A Day” – Costas Apostolis, MD/Akron Urogynecology Associates AND What Would You Say?

Hello Warriors;

Here is your “Doctor A Day,”  Costas Apostolis, MD at Akron General. You know what to do!

Costas Apostolis, MD is currently recruiting new patients for mesh implant in Akron, OH.

Costas Apostolis, MD is currently recruiting new patients for mesh implant in Akron, OH.

Akron Urogynecology Associates

Akron, Ohio, United States, 44333

Contact: Connie Cottrell    330-344-7681

Principal Investigator: Costas Apostolis, MD

Science with Hope

Many of you may have seen the recent video posted by Dr. Shlomo Raz and his team at UCLA. Associate Professor, Division of Pelvic Medicine and Reconstructive Surgery, Department of Urology, Ja-Hong Kim, MD, and a fellow of Dr. Raz, hosts a 20-minute video presentation titled, What You Need to Know About Vaginal Mesh for Female Pelvic Surgery.” Dr. Kim opens her talk by saying, she will provide a “clear, concise overview of mesh.” Finally, a well-respected surgeon is putting transvaginal mesh in plain English. This video will surely provide a much better education for women who are considering mesh as an option for repair of POP or SUI. Please watch the video below, and then read the rest of my post.

  • 1:25 – Dr. Kim defines Stress Urinary Incontinence (SUI) as a loss of urine during physical activity due to weaknesses of the pelvic floor. Dr. Kim notes that a woman’s lifetime risk for developing SUI is 20% – 40%. A 20% variability represents several standard deviations. I believe it is the most conservative approach to cite the highest level of known risk in treating SUI with mesh: 40% LIFETIME RISK.
  • 1:42 – Dr. Kim defines Pelvic Organ Prolapse (POP) as a vaginal bulge of pelvic organs resulting from weaknesses of the pelvic floor and cites that a woman’s a lifetime risk for POP is 30% – 50%. Again, with a 20% variability, I believe the most conservative approach, when contemplating repair with mesh, would be to use the highest incidence of lifetime risk: 50% LIFETIME RISK.

The Coloplast Restorelle® Mesh Versus Native Tissue Repair for Prolapse study for which I’ve been posting “A Doctor A Day,” has INCLUSION and EXCLUSION criteria.

I’m concerned about two of the INCLUSION criterion, specifically:

  • Subject has pelvic organ prolapse with leading edge at or beyond the hymen. At or beyond the hymen is defined as POP-Q scores of Ba ≥0 and C≥ -1/2 tvl or Bp ≥0 and C≥ -1/2 tvl
  • Subject reports a bothersome bulge they can see or feel per PFDI-20 question 3, response of 2 or higher (i.e. responses of “somewhat”, “moderately” or “quite a bit”)

These two criterion for INCLUSION are part of a longer list of criteria that defines a “good candidate” for the study. A woman who has early stage prolapse (Ba ≥0 and C≥ -1/2 tvl or Bp ≥0 and C≥ -1/2 tvl) and/or answers questions about how “bothersome” a “bulge” is with the answer of “somewhat” or “moderately” bothersome is considered a “good candidate” for the study.

In my many discussions with urogynecologists, some of them have been shocked, and even quite upset, that a mesh implant was used for a woman in early or moderate stage prolapse. These physicians said,

“Treatment of POP with surgical intervention and mesh implant should be a TREATMENT OF LAST RESORT.”

According to the University of Virginia, there are stages of POP, 0-4.

  • Stage 0 means that there is no prolapse. The pelvic organs like the vagina, bladder and rectum are perfectly supported by the ligaments in the pelvis.
  • Stage 1 means that there is virtually no prolapse. The pelvic organs are very well-supported by the ligaments in the pelvis.
  • Stage 2 prolapse means that the pelvic organs are not as well supported by the ligaments and have begun to fall down. In Stage 2 prolapse, the organs are still inside the vagina.
  • Stage 3 prolapse means the pelvic organs are beginning to bulge to or beyond the opening of the vagina.
  • Stage 4 prolapse means the pelvic organs are completely outside of the vagina.

Do you know which stage of prolapse you have/had at the time of mesh implant?

Do you think it is ethical for a study to recruit NEW patients who are in early-stage prolapse?

If you could talk to a woman who is considering participation in this study, what would you tell her?


A DOCTOR A DAY KEEPS THIS STUDY AWAY/Dr. Ty Erickson & Lisa Boozer, CRC, of Rosemark Women Care Specialists in Idaho

Hello Warriors;

As I write what is now the fourth blog, citing “a-doctor-a-day” who is participating and actively recruiting for a study that would implant NEW WOMEN with Coloplast’s Restorelle Direct Fix mesh product, I realize that my blog posts could come across as a “witch hunt” of sorts. This notion couldn’t be further from the truth.

I have a genuine and deep concern for the 900 women who would be participants in this study if it proceeds, and I am trying to engage physicians. I reference fact-based evidence, cite published scientific research, and offer these doctors information about the FDA warnings regarding mesh implant, especially for POP.

If you are a mesh-injured patient, you are keenly aware that many of your physicians ARE NOT AWARE of the FDA warnings but became aware when you, yourself, brought it to your physician’s attention.

My letter to the FDA regarding: Restorelle® Mesh Versus Native Tissue Repair for Prolapse

My letter to the FDA regarding: Restorelle® Mesh Versus Native Tissue Repair for Prolapse

View my letter to the FDA (left) and CLICK HERE TO READ MY BLOG ABOUT IT, citing specific reasons with third-party sourcing. You may want to use some of this information when you contact physicians recruiting for this study.

In addition to my posts here, I am calling and/or emailing EACH doctor/lead researcher personally. I IMPLORE YOU TO DO THE SAME.

I want our community to engage in a conversation with these folks to explain WHY THIS STUDY IS FLAWED IN DESIGN AND IS UNETHICAL.

I AM NOT MERELY “EXPOSING” DOCTORS OR TRYING TO HARM THE REPUTATIONS OF THESE FOLKS. I am trying to start a dialog, so that our community’s voices are heard, and so that these doctors know how large is our community of severely injured people.

To that end, today’s doctor to call/email is:

Dr. Ty Erickson and his colleague Ms. Lisa Boozer, CRC, of Rosemark Women Care Specialists.

Rosemark Women Care Specialists
Idaho Falls, Idaho, United States, 83404
Contact: Lisa Boozer, CRC    208-557-2981
Principal Investigator: Ty Erickson, MD, FACOG
Dr. Ty Erickson, a physician actively recruiting patients for the Coloplast Restorelle Direct Fix vs. Native Tissue Repair.

Dr. Ty Erickson, a physician actively recruiting patients for the Coloplast Restorelle Direct Fix vs. Native Tissue Repair at Rosemark Women Care Specialists in Idaho.

As a gentle reminder:

When/if you call, start by listening and asking the doctor/liaison questions. Try to open an honest dialogue about why you think the study has the potential to seriously harm women, and why this harm is PREVENTABLE, since there is already a population of implanted patients to study.

When you call, be as clinical and brief as possible. Our stories are SO PERSONAL and of SUCH DEVASTATION, that we can be tempted to rely on any ear to listen to the horror of our stories.

I am suggesting that you call these physicians in an effort to help the patient population who is being recruited. Lean into your community for social support for your own injuries and for coping with the significant loss of quality of life that you endure.

The goal is making these calls is to INFORM physicians about the PREVENTABLE harm this study will cause. 

Here are some questions you might start your conversation with:

  • You might first start by asking listening. Document his/her answers.
    • WHY, doctor, are you participating in this study?
    • HAVE you seen the research proving mesh is unsafe as a permanent implant?
    • ARE you aware of the adverse reactions of the patients you have formerly implanted? Would you follow up with them and ask how he/she is doing 3+ years after implant?
    • ASK – What’s in it for you doctor? Are you aware of the legal implications?
    • ASK – Are you being personally compensated for this study and in what ways?
    • ARE you aware of the liability you face In federal Bellwether trials, some physicians who’ve testified no longer practice. Are you aware that significant liabilities may be of great future burden to you and your practice?
    • EXPLAIN the reasons you do not want this study to proceed.
    • EXPLAIN to them that your intention is to inform, give he/she more resources and information to have the chance to CHOOSE to halt participation in this study.
    • BUT, if he/she will not take your call seriously (or take your call at all) you will take other actions, like contacting your state’s AG.
    • INFORM he/she that you will use your voice online to dissuade women from becoming patients of their practice.

Below is a list of physicians/facilities I have already contacted. If you have not yet contacted one or more of these physicians, please click on the link for contact information, and please contact them immediately.

If WE do not make our voices heard, who will? We are PLAN B, and there is NO PLAN A.

Dr. Babak Vakili & Jennifer Mann, BSN RN: Delaware’s Christiana Care Health System

Dr. Sherry Thomas/Agoura Hills California

Dr. Arturo Menchaca/Paris Community Hospital of Paris, IL

Women come from across world to have St. Louis doctor remove their pelvic mesh : Lifestyles

superhero_VThe following article is in today’s St. Louis Post-Dispatch article about Dr. Veronikis, “The Sling Slayer.” I hope many women read it and find there are others in pain from the failed medical device known as polypropylene mesh.

Was this your experience with Dr. Veronikis? Let me know @themeshwarrior on Twitter or email me at themeshwarrior[at]gmail[dot]com! I have interviewed him and spoken to many women about their experiences, and I’d love your opinion, anonymously if you prefer! For now, here is the story – one of “leaving in tears… able to make love again… handmade purple hearts… and yes, superhero surgeon caps.

What do you think?

Women come from across world to have St. Louis doctor remove their pelvic mesh : Lifestyles.




Mesh is a barbed wire Imaged designed by @MBLacey

For Immediate Release: April 29, 2014 Media Inquiries: Susan Laine, 301-796-5349, Consumer Inquiries: 888-INFO-FDA,

FDA issues proposals to address risks associated with surgical mesh for transvaginal repair of pelvic organ prolapse

The U.S. Food and Drug Administration today issued two proposed orders to address the health risks associated with surgical mesh used for transvaginal repair of pelvic organ prolapse (POP). If finalized, the orders would reclassify surgical mesh for transvaginal POP from a moderate-risk device (class II) to a high-risk device (class III) and require manufacturers to submit a premarket approval (PMA) application for the agency to evaluate safety and effectiveness. POP occurs when the internal structures that support the pelvic organs such as the bladder, uterus and bowel, become so weak, stretched, or broken that the organs drop from their normal position and bulge (prolapse) into the vagina. While not a life-threatening condition, women with POP often experience pelvic discomfort, disruption of their sexual, urinary, and defecatory functions, and an overall reduction in their quality of life. “The FDA has identified clear risks associated with surgical mesh for the transvaginal repair of pelvic organ prolapse and is now proposing to address those risks for more safe and effective products,” said William Maisel, M.D., M.P.H., deputy director of science and chief scientist at the FDA’s Center for Devices and Radiological Health. “If these proposals are finalized, we will require manufacturers to provide premarket clinical data to demonstrate a reasonable assurance of safety and effectiveness for surgical mesh used to treat transvaginal POP repair.” Surgical mesh is a medical device that is used to provide additional support when repairing weakened or damaged tissue. Many mesh products come in kits that include instruments specifically designed to aid in insertion, placement, fixation, and anchoring of mesh in the body. Instruments provided in kits will be reviewed as part of the regulatory submission for the mesh product. Instruments are also provided separately from the mesh implant, and the FDA is proposing that this urogynecologic surgical instrumentation be reclassified from low-risk devices (class I) to moderate-risk devices (class II). Beginning in Jan. 2012, the FDA issued orders to manufacturers of urogynecologic surgical mesh devices to conductpostmarket surveillance studies (522 studies) to address specific safety and effectiveness concerns related to surgical mesh used for transvaginal repair of POP. In Sept. 2011, the FDA’s Obstetrics and Gynecology Devices Panel recommended that surgical mesh for transvaginal POP be reclassified from class II to class III and require PMAs. In July 2011, the FDA provided an updated safety communication about serious complications associated with transvaginal placement of surgical mesh used to treat POP. At that time, the FDA also released a review of urogynecologic surgical mesh adverse events and peer-reviewed scientific literature that identified serious safety and effectiveness concerns. The FDA previously communicated about serious complications associated with transvaginal placement of surgical mesh to treat POP and stress urinary incontinence (SUI) in an Oct. 2008 FDA Public Health Notification. Surgical mesh indicated for surgical treatments of SUI, abdominal POP repair with mesh, hernia repair, and other non-urogynecologic indications are not part of this proposed order. The FDA will take comments on the proposed order for 90 days. For more information:

The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.

# # #


A “Pictures Page” is Worth 1,000 Words

ResizedImage274404-a-thousand-words_thumb[2]Hi Angels;

I’ve added a new page to the blog that simply includes mesh-gone-wrong pictures, with sourcing if the pictures are public or part of a medical journal/review.

If you have pictures you’d like to share, even if they are yours personally, I can post them anonymously. The reason I added this page is because this term is one of THE MOST SEARCHED FOR terms on Google, Yahoo, etc. regarding the mesh subject matter. There are new people looking for help and information, and pictures are what they want to see first. This page will give them something to show their doctors, a benefit most of us did not have.  Please send me an email or call me if you have any public or private pics you’d like me to post to the new page, here: PICTURES OF MESH (you can also reach this page from the Navigation Bar on the Home/Blog page).

Thank you, Angels!


All my love and then some~


How many words is 1,000 pictures worth?

How many words is 1,000 pictures worth?




The Friday (night) GIFTaway . . . .

Hi Angels & Warriors!

I’ve got to make this post a quickie because it’s late, and you all deserve at least one promise to be kept to you today! As a quick reminder, we are doing the GIFTaway monthly now, on the first Friday, as I am turn my focus more towards preparing with my family for my mom’s big day. Ladies, I ask that you keep us in your thoughts and prayers, because Mom’s pain and her symptoms are vast and complicated. It’s overwhelming to think about at all.

Today’s GIFTaway is a fancy, chi-chi set of hair products from my friends at Osgood O’neil Salon in Dallas. They love you ladies so much, as I talk about you often. So many of you tell me that your hair has changed in some form since your implant, so I want you to have the chance to feel as beautiful as you are by washing and styling your hair with these amazing products when you have a special event that you are up to attending – even if it’s a night in of pampering yourself.

Fragrant fancy hair products, and fragrant delectable coffee? Pamper yourself!

Fragrant fancy hair products, and fragrant delectable coffee? Pamper yourself!

My best friend on the left, and Shara (pronounced Sada) of Osgood O'neil on the right. They helped me find the courage and vulnerability to do the Mesh Warrior photo shoot without holding anything back.

My best friend on the left, and Shara (pronounced Sada) of Osgood O’neil on the right. They helped me find the courage and vulnerability to do the Mesh Warrior photo shoot without holding anything back.

I love this brand of hair care – Davines.  It’s Italian, natural, makes your hair shiny and voluminous and it makes you feel DIVINE. Va-Va-Voom! I’ve also included a $25 Gift Card to the Nordstrom eBar/Coffee Bar. I actually like their coffee better than Starbucks’ and this gift card was graciously donated by my friends who often hear about you all as I stop in and write there often.  You can buy whole-bean coffee, snacks and other Nordstrom-only treats from their eBar (usually located just outside the store’s entry on the first floor). If you don’t live near a Nordstrom, you can use the card online or you could even gift it to another mesh-injured friend who does live near a store. Choices are what makes life worth living!

That’s all for today folks.  I will announce the winner April Friday (and I promise I won’t play any April Fool’s trick on you)!

Rules for Entry

1) Comment on THIS POST


2) Become a follower by adding and confirming your email.  You’ll be immediately notified of new posts that way.

** You cannot win the GIFTaway if you have won it in the last six months, but that doesn’t mean you shouldn’t still share your thoughts or how you used or liked your gift.

Love to you all!

The Mesh Warrior

Friday GIFTaway will be posted soon, but important research first. . . .

Thanks to faithful Blog follower Carla, for finding this research.  I think it’s too important to be buried with all the other links and information.  Please read it and tell me the conclusion you come to after reading.  Very important reading for becoming the best-informed patient that you can be!  Thanks again CARLA!

Church by TivertonDr. Raz & Associates (published Dec. 2013)

Dr. Shlomo Raz/UCLA

Dr. Shlomo Raz/UCLA

The Friday GIFTaway, and my date with Dotty. . .


Our "Selfie"

Our “Selfie” — Dotty Griffith and me, your humble warrior

My friend and fellow “foodie” came out for an overnight visit early this week. We’ve known one another for 17 years now and have kept in contact through our various job changes, moves, life events and crises.  Though our age difference exists, during our chats, we’ve always felt like kindred spirits in some regard- conversations never forced; always delighted to gab about our shared interests including food and writing. We even talked about our favorite presidents, as it was President’s Day Monday, and I found out that she is kin to George Washington. I’m convinced that nothing heals me better than good conversation, and the good Lord knows, Dotty has some fun stories to tell after her many travels and life experiences.

I’ve always looked up to my friend, Dotty Griffith, for who wouldn’t?  She was a long-time writer, editor and THE Dallas Morning News food critic for the better part of 27 years. Our paths always crossed somehow. Me, representing various food and restaurant clients and calling on her as a reporter, trying to impress her with my clients’ food, chefs or unique stories. She, the accessible, down-to-earth, genuine person that you wish all people in positions of power like hers could be, always gracious, never making me to feel a bother for doing my job (which was to bother her, actually.)  🙂

Over the years, we’ve become closer as friends rather than professional colleagues, although we continue to grow in both regards. The reasons for this welcome development are in the way that everything happening in my life right now somehow is – astonishing and feels as if events are not driven by me but rather, driven through me somehow. I pray and presume it is for the benefit of my mother and all of you whom I love dearly and speak with and of often- about what the mesh has stolen from you; stolen from us.

As Dotty and I spoke about our shared dreams and how our differences add up to make for a pretty unique, special and rare kind of friendship offering years of gabbing and gorging to come, my heart was filled with joy and gratitude for my very well-known and popular friend, who reached out to me this time.  When I asked, “Why did you reach out to me; you could have called any of the bazillions of marketing experts in the Dallas area,” she simply said, “Because you know what you’re doing and you are and have always been genuine with me and true, never trying to use me for anything.” That was the highest compliment I could ever receive from her (that, and that she loves my fledgling novel! Yikes! Yay!). I want my life to be defined by that sentiment. So as I hugged her goodbye and told her how delightful our time together had been, she looked back at me with a grin and said, “I’m excited about what the future holds for you, for me, and for us, and I’m looking forward to a nice drive home, pondering all that we discussed,” and with that I felt I had given to her in the ways that she has so often given to me.

I have a deep sense of gratitude for her willingness to share her spirit and her craft with me and with our community, so without further ado…. The Friday GIFTaway is a signed copy of Dotty’s latest published cookbook, “The Texas Holiday Cookbook.” (link to Amazon where you can read more about it or buy one if you don’t win!) 

TEXAS, TEXAS - Yeehaw!

TEXAS, TEXAS – Yeehaw!

Screen Shot 2014-02-21 at 4.57.20 PMDotty is quite simply the Queen of Texas Cuisine, and a really fun dinner companion too!  Thank you, Dotty for graciously donating your book to one lucky winner, as we have lots of Mesh Angels and Warriors that love to cook, and would love a new challenge like TEXAS CUISINE!

The winner is selected at random and will be announced NEXT FRIDAY! 

As usual, two simple rules to enter, and the winner is selected at random:

 1)   Comment on the Friday GIFTaway Blog (this blog post)


2)   Become a follower of the blog by entering your email address at the top right-hand corner where it says:  “Follow Blog via Email. Enter your email address to follow this blog and receive notifications of new posts by email. Join 573 other followers.”

Remember, the blog will send you an email to confirm you are the one entering your email address and as a security precaution so you can verify you were the one to add your address (So don’t forget to immediately check your email so you can verify your desire to “Opt in” to receive my emails).


Your friend and Warrior,