Adding my two cents to the mega mesh mess surrounding transvaginal mesh complications…

Top 10 Things to Know About Mesh BEFORE Having Surgery for POP or SUI

What if I could go back in time to before I had my mesh implant for SUI? What are the things I wish I had known? What do I think I SHOULD have been told? What do I think are the basics that everyone should know before they have surgery for any pelvic repairs, including POP (Pelvic Organ Prolapse), Bladder Prolapse, and SUI (Stress Urinary Incontinence)?

These are the top 10 on my list:

top10

Top 10 Things to Know About Mesh BEFORE Having Surgery for POP or SUI


1) There are FDA WARNINGS

fdawarningFDA warnings went out to doctors and the general public regarding MESH used for POP (Pelvic Organ Prolapse) in 2008, 2011, and a few news releases since then. Even though these warnings are mostly geared towards POP repairs, they also contain a lot of information regarding reported complications for SUI (Stress Urinary Incontinence). There seems to be some debate regarding the safety for mesh used for POP vs SUI. Still, in these warnings, there are specific warnings and guidelines for doctors and the general public that I would think anyone considering having TVM (transvaginal mesh) repairs would want to know, and should be made aware of.
2011-07-13 FDA NEWS RELEASE / 2011 FULL FDA warning (PDF)

In March 2013, the FDA also published “Information for Health Care Providers for SUI“, and “Information for Patients for SUI“.  In these, the FDA suggests that patients be informed about treatment options, including non-surgical options, and surgery without mesh.  They warned that mesh had the added risk of mesh erosion which could require additional surgery and cause “penile irritation and/or pain during sexual intercourse” for sexual partners.

I wish my doctor really explained to me that these FDA warnings existed, and that they directly pertained to the kind of surgery I was having. Not just gloss over general complications that apply to any surgery, but discuss the SPECIFIC warnings regarding TVM.  Things like: complications are: “not rare”; how serious and often permanent complications can be, and that there is no evidence that pelvic repairs using mesh provides any clinical benefit compared to traditional surgery.

2) The Lawsuits all over the TV are NOT just for “older”, “outdated”, and “no longer in use” mesh.

Vaginal-Mesh-Scales-of-JusticeUnless you don’t watch TV, you have probably seen the ads from lawyers regarding transvaginal mesh lawsuits. What you may not know is that many of these lawsuits are for mesh products that are still being used routinely to this day. Yet when many women ask their doctor about this they are often told, “oh, that’s not what we use”, “that mesh is no longer on the market”, or “the mesh we use is safe”, or the “good mesh”.   A lot of women are being told all kinds of untrue myths about mesh being safe, including that it is only mesh for POP, and NOT for SUI that is the problem. This is NOT true.  Even the newest “mini-slings”, and “tapes”, are causing severe complications.

Still, many women report how their doctors will roll their eyes and tell them to stop believing what they see on TV, and by all means they should, “quit Googling things“.

Right. Listen… Do yourself a BIG favor and find out exactly what kind of procedure AND type of mesh they plan to use BEFORE you have any surgery, and then – go GOOGLE it! AND search the FDA MAUDE database yourself. Also, check the legal section of the MDND website. There is another good article on on this from Drugwatch, as well as an article on this blog with details on any recall, lawsuits, and more.

My mesh implant surgery was done was in Feb 2012, using a TOT mesh product still widely used today. It is also a product that I was shocked to discover has countless reported complications and pending lawsuits against it.

The U.S. mesh manufacturers are facing over 100,000 lawsuits in the U.S. where the majority of transvaginal meshes remains on the market.

3) Complications are “NOT RARE”.

FDA-2011Jul-warningI feel the need to repeat this. A lot. I frequently hear the argument that “every surgery has risks”, and many think the percentage of people who actually suffer from complications from mesh is only 1% or 2%. This is because many doctors are reporting out-dated studies that were done BY the mesh manufacturers. There are more recent studies that indicate complications as high as 36%. Of course any study can be bias, and it’s difficult to know how accurate those stats are. Regardless, the FDA’s July 2011 warning specifically said that complications are “NOT rare”. This was a direct change and correction from their previous warning where they indicated the opposite (that complications were rare). Obviously, the stats were great enough for them to change that statement and put out the July 2011 warning.

“Not rare” is rather vague, though, isn’t it? Still, it doesn’t sound very promising. Who wants to take a “not rare” risk? The more I’ve researched the stats, the less promising they sound.   The fact that there are over 100,000 lawsuits is also pretty telling.  Are we to believe they are all just lawyer generated hype? What about the fact that there are even more reported complications that do not even have any lawsuits pending?  Here’s an update on this situation from MDND: “FDA: Stress Urinary Incontinence (SUI) Surgical Mesh Reports up 36 Percent“.

4) Surgical Mesh Implants are PERMANENT

Yes, a mesh implant is permanent, or at least meant to be. The FDA stated that using mesh can “make any future surgical repairs more challenging and can put the patient at risk for additional complications and surgeries“. Mesh attaches and well, meshes with your tissues. That’s what it’s designed to do. This means that if there’s a problem, it is very difficult to fix because they can’t usually just remove the implant. While there are a ton of doctors who know how to put mesh INTO your body, most do not know how to remove it. The mesh adheres to organs, nerves, muscles and even bones. My mesh had to be scraped off my pelvic bone when I had it removed (and no, it wasn’t suppose to be there).

5) Complications are SEVEREJL-NotManageable1

Complications from TVM may not normally be life threatening, but they do greatly impact one’s quality of life. Because mesh is meant to be permanent, when there are complications they are not only usually severe, but also not easily resolved. Frequently damage done is permanent. As if that isn’t bad enough, the complications can keep progressing as the mesh erodes and works its way through your tissues, organs, etc.

The complications are summed up in the FDA report, as follows:

“The most frequently reported complications from surgical mesh used to repair POP include:
mesh becoming exposed or protruding out of the vaginal tissue (erosion), pain, infection, bleeding, pain during sexual intercourse, organ perforation from surgical tools used in the mesh placement procedure, and urinary problems.
Some reports cited the need for additional surgeries or hospitalization to treat complications or to remove the mesh.”

Memorial Wall of Mesh Survivors! (by Jaye Nevarez)

Memorial Wall of Mesh Survivors (by Jaye Nevarez)

My story has to do with my leg and mobility primarily. Not being able to walk is a problem, for sure. My whole life was thrown upside down this past year when suddenly, at 46 years of age, I felt dependent on my husband and children. This was bad enough, but, I have talked to lots of women who make my story sound like a walk in the park.

Many have chronic pain, infections, and inflammation. They have damaged bladders, colons, urethras, nerves, vaginal walls and so much more. These are major issues. Debilitating, life-changing problems, that often keep getting worse and worse and lead to surgery after surgery. Not only are mobility, pain and dyspareunia problems, but we’re talking self catheterization and colostomy

bags here people!

What’s worse is many women with complications go undiagnosed or misdiagnosed. Some are just told to live with it.

Is not peeing when you sneeze worth these risks? Even if you need more serious repairs, and no doubt many do, is it worth these risks when you could have traditional surgery without mesh (see #8)?

For more details on the types of pain mesh can cause, check out some of these women’s stories in the Patient Profiles page of MDND, videos I’ve found. Better yet “chat” with some of these women yourself in one of the many forums, or Facebook Groups (mentioned to the right and bottom).

6) Mesh hardens once it’s in your body, and is not inert.

Mesh removed after 3 months, Courtesy Liz Reece(MDND)

Mesh removed after 3 months, Courtesy Liz Reece(MDND)

They show you some picture of a cushy, gauze-like material that will be used. What I didn’t know beforehand, though, was that once that material is in your body it changes dramatically. This is because it is made of polypropylene, and it hardens from your body heat into a consistency similar to a strip from your screen window. This is why it can cut, or “erode”, through tissues causing damage. (“Dr. Ostergard on Degradation, infection and heat effects on polypropylene mesh”)

Contrary to original beliefs about mesh, there is now evidence and medical opinions that mesh is not inert.

In a Federal Lawsuit Against C.R. Bard says Mesh is Not Inert, and:

“The Plaintiffs claim that the polypropylene mesh (monofilament) is not inert, meaning it does not lie dormant in the body and is biologically incompatible with human tissue. In a subset of the population an immune response is noted in the form of inflammation of the pelvic tissue and severe adverse reactions including, but not limited to hyper-inflammatory responses, chronic pain and fibrotic reaction…”

Im another MDND article, Get the Mesh Out! Doctors React to Patients Following FDA’s July Warning about Surgical Mesh”, Dr. Donald R. Ostergard states:

“I gave a lecture to AUGS in 2006 on this topic and I was called a dinosaur who had his head in the sand about advances. As things have happened I feel vindicated. I wish this had been said some time ago. Polypropylene is not inert even though the manufacturers said it was inert.”

“It’s the biggest public health issue facing us now!”

7) There is “NO EVIDENCE Mesh Provides Any Clinical Benefit Than Non-Mesh Surgeries”

“NO EVIDENCE” mesh is better? That is HUGE! That is also another part of the FDA warning. Notice this warning did NOT specify a specific type of mesh, a certain manufacturer or brand. It is a very general statement and was geared towards ALL surgical mesh for POP. It means they have been fixing pelvic repairs for years using our own biological surgeries etc., and that there is not any proof found that using mesh has any clinical benefit. You can read this in the FDA announcement (www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm262752.htm). You can also do a search in Google Scholar, for example, and easily pull up articles like this one: “Long-term outcomes of vaginal mesh versus native tissue repair for anterior vaginal wall prolapse”, where it concludes:

“The use of mesh for anterior prolapse was associated with an increased risk of any repeat surgery, which was driven by surgery for mesh removal. Native tissue and vaginal mesh surgery had similar 5-year risks for surgery for recurrent prolapse.”

SUIBrochureSample

“One day you have urine leakage. The next you don’t. End of story.”
“End of Story”?! Hardly!

However, this is not what many patients are lead to believe. Mesh was marketed as “the gold standard” of treatment for POP/SUI. Many seem to be clinging to that belief in spite of all the data and reported complications.

What are some of the common reasons still being used in support of mesh? Well, some will say using mesh is “less invasive”. Is it?
Patients are told there is less down time and quicker recovery time. They are led to believe it will be “quick and easy”. It’s an outpatient procedure. Of course, this sounds great in today’s busy world. But, is it that quick and easy? Well, it’s definitely quicker for the doctor to implant it. My implant surgery itself was done in less than fifteen minutes! Fifteen months later, however, I am still dealing with the very problematic aftermath.

To me, the “less invasive/quick and easy” idea is nothing more than an upsetting marketing strategy disguised as “helping more people”. The bottom line is that IF you are one of the MANY women who winds up having some of those “not rare” complications- then the repercussions of that less invasive surgery are definitely NOT “quick”, and anything BUT “easy”.

Some will say mesh repairs last longer (than non-mesh repairs using your own biological tissue). Will it?
Where is the evidence of this? There are many women, including myself, who have had to have repeat surgeries after mesh implants. Often, multiple surgeries are necessary to try to remove the mesh, and fix the further damage it caused.

Linda Gross, who recently won her first battle with Johnson and Johnson, reportedly had 18 subsequent unsuccessful revision procedures following the initial surgery. She has described her life after surgery as a “living hell” and has characterized she and thousands of other women as “guinea pigs” to the vaginal mesh maker.

There is also that FDA report that completely contradicts the belief that mesh is “better”. This is what that FDA warning stated:

“The FDA also conducted a review of scientific literature published between 1996 and 2010 comparing mesh surgeries to non-mesh surgeries. The agency review suggests that many patients who undergo transvaginal POP repair with mesh are exposed to additional risks, compared to patients who undergo POP repair with stitches alone. While mesh often corrected anatomy, there was no evidence that mesh provided any greater clinical benefit than non-mesh surgeries.”

Think about this as well; If your transvaginal mesh surgery fails, you then have a foreign object in your body that is literally cutting through your most sensitive tissues and wreaking havoc. If your non-mesh repairs, using your own biological tissue, fails than you may still have SUI or need further repairs but, you do NOT have the problems of mesh erosion and removal which is next to impossible.

Many believe it is not the mesh, but that some patients are higher risks. Really? And what makes a patient “high risk”? Who decides this? What criteria are they basing that decision on? Are doctors telling patients that they are not good candidates? If I was a high risk for any reason, I was never told so. I have talked to numerous other women from their twenties to their sixties, from all walks of life, and all shapes and sizes that have had mesh complications. Most of them claim they were not told of ANY risks, let alone that they might be a “high risk” patient.

Then, there is the argument that it’s not the mesh, but it is the doctor implanting it that is at fault. Are they? Mesh manufacturers would like you to believe this, because that gets them off the hook, and they are the ones being sued primarily (the manufacturers, not the doctors). Many will tell you that if you go to a reputable doctor that puts the mesh in, you should be fine. Personally, I disagree. I disagree because I don’t see how the product can be safe when it literally hardens and cuts through your most delicate tissues (see #6!). I’ve felt that pain firsthand. I’ve also talked to women who went to very reputable doctors for their mesh implants, and STILL had complications. One woman even stated;

“I had an excellent surgeon place the mesh. When I was examined by a different doctor, she was visibly shaken when she saw who did the mesh placement. She referred to the surgeon by their first name and said she knew their work, and if **I** was having problems, then anyone can have problems.”

8) There Are ALTERNATIVES

Surgery should be the last resort in most medical conditions, as any surgery has risks. Non-surgical options for POP and SUI include pelvic floor therapy, and pessaries. Many women have great success with these methods, yet these non-invasive options are often not even mentioned or discussed with patients prior to surgery.

When surgery IS required, women should know there are NON-MESH surgical alternatives. These are the “traditional methods” that the FDA was referring to when they said there wasn’t any evidence that mesh worked any better than “traditional repair surgeries”. Of course no surgery is without risks, but using transvaginal mesh brings many additional risks, like mesh erosion, to the table. Yet, many women are also never offered these non-mesh surgical options. Why? Maybe it’s because many doctors that implant transvaginalmesh, do not even know how to do the non-mesh surgical repairs. The marketing of mesh as “quick and easy” comes into play again and again. Non-mesh repairs require more surgical skill and time. However, there are doctors that do non-mesh repairs, and they are worth seeking out.

Using the fascia, or your own tissue is one of the traditional non-mesh methods of surgery for SUI or POP repairs. This is what Dr. Raz, the surgeon who did my removal surgery, said he would do IF I needed it once he removed the mesh. It took some calling around, but I was able to find a local GYN who also does pelvic repairs and does NOT use mesh. Hopefully, more and more doctors will abandon mesh and use non-mesh alternatives again.

9) HELP is HARD to FIND!

helpIf you DO have complications – please know that often the surgeon who did your implant may NOT help you. Some will not even consider that the mesh is your problem. Before my surgery, I really thought, “if there’s a problem… they will fix it”. WRONG! Who knew??

Turns out, there are a LOT of doctors who know how to put mesh in, but very few with experience at removing it. I wish I had known that the surgeon who did my implant would not help me if there was a problem. Not only that, but that I would not be able to find a doctor anywhere in my area that knew how to remove the mesh successfully in its entirety. Matter of fact, I was told it was “impossible” to remove all of the mesh, especially the part in my thigh/groin where my pain stemmed from. Luckily, I knew that wasn’t true because I had been researching things online myself.

I wound up traveling across the country, from NY to CA to go to one of the only well-known experts that does full mesh removals (not just partial removals). Actually, I believe he is THE best and so do many others – and that would be Dr. Raz at UCLA.

In addition to a shortage of specialists that are trained in removing mesh, the cost of surgery is a huge factor. Those who have health insurance, still need to cover travel expenses, and worry about in-network vs. out-of-network coverage.  Many women do not even have health insurance at all because they have lost their jobs, homes, and health insurance.

10) FDA “Approved” does not mean the device was actually tested.

MarkeyPrior to my own ordeal, I never thought much about the FDA – but, I believed that “FDA approved” meant something was safer than if it was not approved. I was shocked to learn that medical devices can be FDA approved based on the fact that a previous, similar device was tested and approved. They do not need to test each product. But, here’s the really scary part – if/when an original device winds up being RECALLED or pulled from the market due to complications – they DO NOT recall ALL the many other “similar'” products that snuck in without testing on the basis of that first product. ?!? Did you catch that? It’s sort of tricky to understand, but the more you do understand it, the more obvious it is that this system is seriously flawed.

For a very detailed explanation of this see the petition from Taigen Leigh, and then there’s this:

http://youtu.be/qCda6GK0S38

——————————
counting lossesSo there’s my top 10 things I wish I knew about MESH before I went under the knife. There IS more. Lots more, and the more I learn, the more infuriating it all is.

When I decided to have surgery using a mesh implant for SUI, I was busy with work and my family like the rest of the world. The surgeon and procedure were recommended to me by a good friend. I thought this would be a minor surgery for a somewhat embarrassing, and very common, problem. I went on the little information that was given to me from the doctor, and believed I would be fine in a matter of days. I believed the marketing, which is that this will be “less invasive”, “quick and easy“.

There was no discussion of FDA warnings, alternatives, or that I might not be a good candidate. I did not research it myself because I didn’t think I needed to. It simply never dawned on me that a product would be used that had such highly reported risks. Especially not to fix a problem that literally posed no real threat.

Now that I have lived with, and researched mesh complications, I’m appalled that “they” are still marketing and using mesh at all. I’m even more appalled that there are so many women who suffer complications that were NOT given crucial information upfront. How is this possible? How can anyone make a really well-informed and good decision if they don’t have the basic hard facts to go on?

If someone chooses mesh surgery AFTER they have been given those hard facts, than that is their choice and I would respect that choice, even if I didn’t agree with it. However, to not even be given the opportunity to make a well-educated choice? Especially one that could potentially greatly impact the rest of your life? That is just not right.

As I have mentioned, I have talked to countless women who are in pain and agony. I am NOT exaggerating. Their lives have been torn apart, and their stories are more than a little depressing. The fact that this all seems so AVOIDABLE to me is what really gets me. It’s not like mesh was used because there WAS no other options. It is being used INSTEAD of better options.

I’m all for women who have POP or SUI to come forward and get help, but when they get the courage to do so, help them! Don’t ruin their lives!! Don’t let manufacturers and marketing companies sell them defective products and tell them how “quick and easy” things will be when there is so much evidence to the contrary. Please don’t make them find out all this information AFTER they have problems.

 (download this article as a PDF)

==============Related Mesh Me Not Blog Posts================

==============Support Groups================

Perhaps even more helpful than articles, is talking to a variety of others who are suffering from mesh complications, and are in various stages of treatment.   Three of the larger support groups I found helpful are: 

73 Responses »

  1. Thank you! I’m glad you think so, and appreciate the read. I know, however, that with you I am preaching to the choir. I do hope people who are contemplating surgery might stumble across this list…

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  2. well said i couldnt have put it better myself, i myself had the surgery and i still cant find a surgen to take an intrest in me

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  3. I 1st had this done in 2006, and had many repair/removal since. Other complications as well. Maybe if my doctor had warned me about everything I may not of chosen to go this route. I even thought about it for a while and gave him plenty of time to tell me otherwise. Worse decision ever in my life. Just about everything you say is true. Spread the word….

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  4. Thank you for such an organized compilation of all the important issues related to mesh. I go in for my removal Feb 20th with Dr Baxter, one Dr Raz’s group doctors. Dr Raz was busy until late March. I was just wondering how you felt afterwards? I have the sling, both anterior and posterior grafts and a gortex sacral colpopexy…..basically four pieces of mesh that have to come out…..I’m so scared.

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    • Hi Heather. My apologies for the delayed response. I was pretty sore after mesh removal – it is not an easy surgery… but, it was no worse than living with the constant pain of mesh before removal. My recovery was slow, but I did feel so much better after a few months. Unfortunately, there was more complications, and I did not get all the way better. Arthritis set into my hip joint and I wound up needing more surgery anyway – a hip replacement – which I just had. Between this last surgery, and the mesh removal, I hope to make a full recovery or as close to full as possible. Getting the mesh out, by an expert at UCLA, was still the best choice I made and I would do it again. I’m not familiar with Dr. Baxter, but if they work with Dr. Raz I would think they are getting the best training possible. Best of luck to you, and please keep us posted. Take care.

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      • Wonderful information! As the daughter of someone living with this nightmare, I truly appreciate it. My mom is one of the “victims” of this awful tragedy. She has no quality of life, and if it wasn’t for her faith in God and family and friends she would no longer be with us. I wish I could take her to see Dr Raz or any of his partners. She can’t even stand the vibrations of a car ride. I am considering it though, and hoping that she makes it somehow. So happy to hear your “success” story. Please continue to inform the general public. Much more is needed on this. Thanks again!!

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    • How Did your surgery go and did you like Dr. Baxter?

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  5. A comprehensive summary of the mesh problem.

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  6. If you are interested in understanding conservative management of pelvic floor dysfunction or are having surgery or have had surgery please consider either of these 2 books. Pelvic Floor Essentials and Pelvic Floor Recovery: Physiotherapy for Gynaecological Repair Surgery. http://www.pelvicfloorrecovery.com

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  7. I wish my doctor warned me about the complications, before the surgery every time I asked him about complications he always told me everything will be ok. After 2/12 years I have severed leg pain, can’t pee right and it’s painful, abdominal pain and still when my bladder is full I can’t sneezed because pee comes out. I regret thousands times about this surgery. Also he lied he told me its’s going to be a little sling but when his assistant doctor summited the medical bills the paper said it was a mesh from leg to leg. God help me with this, when I had this surgery I was only 38 years old he should gave me more options. Thanks

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    • Hi Galia, I’m so sorry. It’s a terrible, terrible thing that keeps happening to so many. Yes, they SHOULD be offering more options… instead of clinging to the idea that this is “safe” and “the best” method. Very Very frustrating, and sad, actually. It sounds like you had a TOT sling too.. but, you should get a copy of your actual medical records from the surgery, so that you know exactly what you are dealing with. I know it is so overwhelming, but I sincerely hope you can find a way to get to one of the few doctors who are experts at doing full mesh removal surgery. I really think getting the mesh OUT is the first step in recovery. Also, you are not alone. I am not on this blog very much…. but there are support groups with hundreds of other women from all over that you can join for information and support. Please take care of yourself.

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  8. I guess Im going to have to get my records to see what year it was done after I get a colonoscopy to see if theres any damage there. Had the vaginal ultrasound done that came out ok. I have lower pelvic pain and was getting UTI’s all the time. I was also told the Dr had to clean up the mess inside from a previous surgery and thats when the mesh was used, so Im not sure yet when it was actually used.

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  9. I was examined by Dr. Lobel in Albany, NY – He comes highly recommended and said that he does thousands every year. He told me that he will use a small piece of mesh ( showed me ). I have to have this done because I cannot control my urine anymore, especially when I cough, sneeze, laugh and etc. After reading this I don’t know what to do.

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    • Carmella-

      PLEASE don’t get the mesh. Regardless of what he said, that small piece of mesh is polypropelene (plastic!) and it does not stay looking that way. It hardens. It shrinks. It erodes/cuts. Even the newest mini-slings, or TAPE, as many docs are calling them are causing havoc. Please see this article: https://meshmenot.wordpress.com/2015/01/10/mini-slings-cause-mesh-complications-too, which links to a medical journal article.

      There ARE doctors that can help you, withOUT using mesh. There’s NO evidence that the mesh repairs last longer or work better (according to the FDA!) and if the non-mesh surgeries to not have the ADDED risk of mesh erosion – which is really really bad. Have you tried Pelvic Floor Therapy? Or a Pessary?? Those are also NON-surgical, NO risk things to at least consider before any surgery.

      Please talk to some of the women in these groups too… They can help you decide:
      – Mesh Problems (Open/Public): https://www.facebook.com/groups/meshproblems
      – Women’s POP/SUI TVMesh Complications Support (Closed Group): https://www.facebook.com/groups/317477065098820/

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    • Do NOT get the mesh. Trust us women who have had their life changed for the worst because of the mesh. I have nothing to gain by sharing with you what I know. Do not trust the doctor that will profit from you and if you have complications that will reject you as his patient. Doctors are “sold” on this mesh and other big pharma crap by the Sales reps and their doctored up “proven safety clinical studies”. Have him show you the proven safety clinical trial studies, he can’t, because there was none done. And what was done was on a very few women, mostly done on animals and cadavers. Then on to women like myself, and hundreds of thousands of others. Do not believe the doctor if he says “this is not the mesh in the lawsuits” it is! It is the material. There are more than 10 companies that makes the mesh with various models but they are all made out of polypropylene. One of the raw material dealer is Chevron Phillips. Do you want a material that is made by them that is permanently implanted into your body that can’t be removed? And if you find a Surgeon to remove it, it still will leave your body permanently damaged? NO you don’t!

      There is another way; it’s called a Burch method that uses your own tissue. It’s been done for decades, but it takes a skilled experienced surgeon to do it. So if a doctor says he can’t or won’t do the Burch than you don’t want him! Another way to help with SUI is to have Pelvic PT. But you must have patience, it does take months to make a difference but it does help. Please try everything but the mesh.

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    • Another relevant article: https://meshmenot.wordpress.com/2015/01/06/mesh-for-sui-but-too-risky-for-pop/

      Mesh slings/Tape are not so “quick and easy” if you are one of the “non rare” people who have complications. Don’t believe the “it’s only the mesh for Prolapse” excuse. Not true.
      Doctors are being duped about this too.

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    • I always check patient satisfaction for any doctors now on Healthgrades and Vitals. I like Vitals because it allows actual comments. I know you have to take them with a grain of salt, because often angry people are more likely to fill these out then happy people, but still worth seeing, and this one didn’t look very promising:
      http://www.vitals.com/doctors/Dr_Robert_W_Lobel/reviews

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    • Don’t do it! My incontinence is worse, 5 years of constant, never ending pain! I would rather have worn diapers for the rest of my life!!! Doctor thinks I’m a drug addict, and it’s all in my head! Believe me, DO NOT DO IT!!!!
      Angie

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    • Carmella, please save yourself a journey to hell and back with pain and suffering. I too, had a little piece of tape (as it was told to me that it was), and ever since that day I have suffered with constant pain and have had multiple revision surgeries to date with a removal still to come. Listen to us the real women who have had MESH implanted into us and read our stories for we come from all over the world and we all have similar horror stories of what mesh has done to us. I shall put it this way: if being unable to sit or stand or ride in a car is okay as a complication then what about scar tissue and adhesions causing pain on urination, defacation or the inability to have intimate relations due to pain in the vagina caused by instruments when surgery was done or from mesh erosion (where mesh has started to protrude out into your vagina) and don’t forget about the nerve damage that occurs more often than not plus bladder spasms, anal spasms etc etc. And just so you know my incontinence problems are at least 250% worse since I had this ‘simple life changing operation’, the doctor is lying to you, google mesh and complications and if you can find a video of the operation of how they insert the TVT O or TVT EXACT cos if I had had access to a video and saw how roughly butchered your vagina is during this procedure and how they go in blind I NEVER EVER WOULD HAVE HAD THIS OPERATION. this product has never undergone clinical trials to prove its efficacy or safety. MESH is made from the resinous pyproduct which comes from the production of gasoline – do you really want a toxic implant that is known to leach chemicals and toxins into your body and one that starts breaking down almost as soon as it is implanted????

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    • Run….Run very fast!!!! Mesh destroyed my life as I knew it. Bedridden for past 2 1/2 years. 5 surgeries later and the pain consumes my life. I feel like I’m dying a slow miserable death. Please listen and learn. Women are dying!! Women have killed themselves because of the pain and suffering!!! Pain consumes me and I would not wish this upon my enemy. God protect you.

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  10. Please reconsider getting this done! I’m 5 months post surgery and feel like a knife is cutting me! Had incontinence for 30 years and would rather pee on myself than this! Don’t do it!

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  11. Carmella,

    I concur with DebCNY above. I thought having mesh implanted was my only option too, (it was the only option I was even made aware of) and allowing this to be done to me has proved to be the worst mistake I ever made. Five surgeries, and three trips from Mississippi to California for full mesh removal and an autologous (native tissue) repair, I am a little closer to normal again, however the mesh caused tremendous damage to my body, and I will never, ever be the same again.
    There are doctors that can repair your problem, and can use a tendon or fascia tissue from your leg to create a “sling.” Native tissue will not cause a foreign body reaction, in which the body recognizes this as a foreign object, and tries to expel the mesh from the body. When this was happening with me, I literally felt that I was being stabbed from the inside out. This did not start happening to me until four years after being implanted; many women suffer these consequences immediately, and some as far out as ten years post implant. Before I could get out to See Dr. Raz at UCLA for full removal, I ended up walking with a cane. The damage from the mesh has severely hindered my husband and I being able to have relations; even after mesh removal.  I can no longer do the things I use to do. I had a very active life; now I am afflicted with auto immune diseases, which Dr. Raz said could happen after I had partial removals before seeing him for a full removal, and the toxins are in my organs. He said they will never go away. Is this really worth it to you to take the risk of having even one of these things go wrong?
    Your doctor says he does “thousands every year!” Are you aware that there are over 100,000 lawsuits filed against mesh manufacturers for the damages that have already been done to women, and the case load is growing by leaps and bounds. My case has been filed for five years, and we are no closer to resolution. I will likely never be recompensed, despite the fact that I am out thousands and thousands of dollars.
    My life has been destroyed, and if I can save just one woman from making this decision, maybe all that I have been through will not be in vain!
    Suzanne

    Liked by 1 person

  12. I’m in the same boat as the ladies above. I was only 40 years old when I found myself peeing when I sneezed, coughed or ran. Because I’m an athlete (or I used to be, anyway), I trusted my doctor, who said that a “little strip of mesh” under my urethra would let me be active again. But my body was one of the 15% or more of women who “reject” the mesh – and it starts to erode through the vagina and urethra. Much like an infected, inflamed splinter in your foot that stings and burns until it is out, mesh feels much like that, except it is 100 million times more excruciating when this piece of sharp plastic is cutting through your most sensitive female parts. My story is a long one – but suffice to say I have now had 7 surgeries in the past few years to try to remove the shards of plastic and deal with all the complications it caused. I can no longer run, bike, sit (at all – imagine not being able to SIT!!) or have sex. At age 45, I am disabled, and this is permanent. I go to pain management monthly, have to be on 6 different heavy pain meds, and still live every day in pain. And you know what? If my story was rare, then I could accept it as a fluke maybe. But when 100,000+ other women in the USA alone, plus just as many in other countries, are having the SAME pain and the SAME problems from an SUI mesh sling – that is unacceptable. There are ways to fix leaking without using mesh – doctors can use your own muscle tissue to make a sling. Here’s my final comment – since there is NO way for doctors to tell which women will be in that 15% of women who are seriously injured by mesh, and since there is NO way to fix the problem if you do happen to be one of that 15%, why in the world would anyone take that kind of risk? A greater than 1 in 10 chance that you’ll live in permanent severe pelvic pain – just for the chance to not leak when you sneeze? I would wear pads, I would try pelvic PT. But if I knew then what I know now, I would NEVER let any doctor put plastic into my body for any reason. Please do not do this. Join the open group Mesh Problems to learn more and hear from others in the same boat. https://www.facebook.com/groups/meshproblems/

    Like

  13. A resounding NO. I cannot go into personal details at this time, but if I did have a choice to do it all over again that man would never ever touch another human, or non human again! Mesh needs to be stopped as I am slowly dieing inside and have lost my whole life because of it. May someone help you, even if it’s not I, find an answer other than this person and his answer of a little piece of mesh….. Please reconsider, and go see someone else, get another opinion, even if it’s out of state.

    Like

  14. Do NOT get the mesh!! He is the surgeon that put my mesh in. Yes, he shows you a small piece of soft mesh, but neglects to tell you the complications. I had my mesh removed by Dr. Raz two years ago, and now have my health back. Please do not get mesh!!

    Like

    • Carmella – I wanted to note that Dr. Raz is at UCLA – in CA. Like Julie who commented above, I’m also from NY… and like Julie, I also went ALL the way to CA to Dr. Raz for FULL mesh removal. Convenient? No. Easy? No. But it was worth it because local docs could not/would not remove the mesh sling completely. There’s only a few experts that can actually remove the mesh if/when you have problems. They don’t tell you THAT upfront either. 😦

      Like

  15. If you need to stay in Albany area seek out dr. Murray, he used to work in the top hospitals in ct. He uses other methods than mesh. After dr. Murray performed my first explant surgery after many and I do mean many (12) in a span of 5 months from the one dr, it was such a relief, after approx 2-3yrs of suffering to be on a semi road of recovery. But I will never be right again.

    Like

    • Good to have this Doctors name. I’m still searching for more docs in the NY area that can do NON mesh repairs.

      I don’t know this doctor in Albany, but I was told she also specializes in non-mesh repairs:
      Dr. Erin C. Crosby, MD – Albany Med Urogynecology :http://www.albanyurogyn.com/

      If anyone has experience with Dr. Crosby, and can let me know (privately via email: meshmenot.wp@gmail.com or comment publicly here) that would be great. Thanks.

      Like

  16. I was going through ten pair of pants a day. I was very very ignorant to options on what to do for this problem. I scheduled in with my urologist and while sitting in the waiting room, saw a brochure explaining a surgery with mesh. I was so excited tha
    t there was something to rid me of this uncomfortable thing happening to me. (Peeing every time I coughed, sneezed, etc).
    I had the surgery done.
    I had nothing but trouble since!!!!!
    A couple years later, due to complications, i requested to have it removed.
    I would rather pee myself every day, all day long, than go through the torture having a mesh inside me has caused.
    For three years now, i have been in the most horrible devastatingly torturous pain continually. Its been a hell of a traumatic experience!!!!!
    Pain, no sex with my husband–too painful!!! Cant barely do anything physical….worn down constantly from the pain. Cant sit, lay down, get up, lift anything, just too many negative things to even mention. Its like a time bomb is living in my body, slowly killing me. The life i once knew is gone!!!!! Two years of doctoring, referrals after referrals, to be told there is nothing they can do to help me. I can go on and on!!!! Please!!!! I am praying for you right now. There are other options than having this mesh put inside you. Research other options!!!! Please dont have mesh(plastic) put in your body!!!! It kills women!!!!! The WORST MISTAKE I MADE IN MY LIFE WAS LETTING MESH BE PUT INSIDE ME!!!!! I am going to pray that God speaks to you and you make the decision not to ruin your life.(and thats what will happen)!!!!!!!!

    Like

    • Thank you for sharing and commenting here, Lisa. Your story is similiar to so many others. I hope others will find this blog, and read your comments BEFORE making their decision to have surgery or not for SUI. There has to be better options than mesh.

      Like

    • Thank you Lisa. I was about to have it done. I do hope you can recover completely.

      Liked by 1 person

  17. Carmella, I can only say this that mesh ruined my life, my body rejected it from the moment of implant. My downward spiral of debilitating pain, inability to stand walk or lay down was torture. I recently had a full mesh removal, infection set in my wound, am now sitting here with an open wound with a wound vac on. Please take your time and read all the data an information available to you on the various mesh sites. I wish I had known the Doctor was putting mesh into me. But I didn’t.. Does this Doctor remove mesh as well as implant it? Best wishes….Jan Urban

    Like

    • Thank you, Jan. Mesh removal is not easy… in so many ways… and often not a fix-all. Often, there are more repairs to be done.. or some kinds of permanent damage. But, I still think getting all the mesh out, or as close to it as possible, is the best first step for anyone already having problems. I do hope you will feel better with time. ❤

      Like

  18. Please, don’t jump into this before you get the facts. Mesh is a long term nightmare. It ruined my marriage and it’s not done. I lost two inches in my spine last year because it is shrinking and I am in constant pain. Your first surgery won’t be your last. The are other ways to fix you. Please investigate. I don’t want to meet you later in our mesh survivor support group. Don’t get it, please

    Like

    • ❤ Karen – "Nightmare" is a good word to use when it comes to mesh. A nightmare you can't wake up from…. and that never should have happened in the first place. It never should have even been an option.

      Like

  19. I just came across this site as I am trying not to think about my pain. I was one of the early recipients of the vaginal mesh surgery (2003) and immediately had severe pain and was told by the surgeon that I must have a gyn issue. Back and forth I went from gyn to urologist until it was confirmed by the peer of the urologist who performed the surgery that I had a neuroma and other nerve damage and MRI showed inflamation. Gyns did not want to touch me when they found out I had the mesh sling. One Gyn gave me my paperwork back and told me that I wouldn’t be charged and to go to a urogynocologist. So I found a decent one at Beth Israel Deaconess who prescribed me with Gabapentin, vaginal masasge therapy and a nerve blocker. The nerve damage is a little better with the medicine, but I cannot have intercourse with my husband without extreme pain. So I don’t and the scar tissue is insane. I have “acquired ichthyosis” which indicates some systemic problem, such as cancer but doctors can’t find anything. My body is crying out rejecting the sling, in my opinion. Doctors convinced me that things happen and it is the gamble from surgery. What upsets me the most is that my doctor at beth israel has changed his tune and will not touch me with a ten foot pole. When first seeing him he was all for removing the sling. 13 years later and through menopause I have a horible skin condition and have just learned to live with the pain. Thank you for this blog. It helps me feel that I am not alone.

    Like

  20. My daughter had mesh surgery and has not been well since i love her want to help but feel very hopeless because i have no money and neither does she to get the help she so desperately needs i don’t know where to start

    Like

    • Alberta – I’m so sorry to hear this. I’m not sure where you live, but you should know you are far from alone, and you can get the support and info from others who are dealing with the same issues in support groups like:
      Women’s POP/SUI TVMesh Complications Support (Closed Group): https://www.facebook.com/groups/317477065098820/
      and Mesh Problems (PUBLIC/OPEN TO ALL, including doctors, etc): http://www.facebook.com/groups/meshproblems

      Many are in the same boat financially. Unfortunately, there are not any easy answers but, there are some things you can look into, like organizations that help with airfare, etc.

      If at all possible, it’s important to get your daughter to one of the few doctors that will actually be able to help: Finding the Right Doctor for Surgical Mesh Complications

      Like

  21. Is the mesh used for sacrocolpopexy the same tape like polypropylene that can cause severe problems and if put in can it be more easily taken out if problems occur?

    Like

    • Kathy,
      it is usually the same material, but is implanted in a different way – thru the abdomen, instead of vaginally like transvaginal mesh. Many doctors feel this is safer, and less likely to get infected. However, once inside you, it is the same material, polypropylene, and is also can erode, etc. It also meshed with your tissues, and is meant to be permanent, just like TVM. I have met women in support groups with both kinds of mesh.. and there are some medical articles stating it can cause similar problems.

      Please see: https://meshmenot.wordpress.com/2015/05/30/is-it-just-transvaginal-mesh-causing-problems/

      Like

  22. Wow thank you so much sweeety. I am getting a second surgery for abdominal mesh by J&J . 12-12-11 first removal . Dr. Bruce Ramshaw will be doing this operation . I am so happy he is only 6 hours from home in Knoxville Tennessee . He & his wife Brando have dedicated the last several years studying mesh patients . He has performed over 800 operations helping people . Dr.Raz & the few doctors across the U.S. like you said are so far away . I was going to one in Pboenix Arizona but just knew how hard it would be on me & my husband to drive it . He is afraid to fly . Our church was paying the out of pocket expenses . That is such a blessing . I wish there were two doctors that were close to each other that could do back to back . Four surgeries since that day for removal. That day was a piggy back 10 hour surgery for both abdominal & vaginal . Your inf. has been helpful to me .

    Like

    • Hi Connie. Thank you for sharing. I have heard good things about Dr. Ramshaw. You are so right that there are not enough doctors that can remove the mesh and really help people. It makes a terribly difficult situation even more hard. =( Please keep us posted on how you make out with Dr. Ramshaw, and best of luck to you for some much needed relief! ❤

      Like

  23. The safety communication also says that with the exposure to greater risk comes no evidence of greater clinical benefit such as improved quality of life.

    Liked by 1 person

  24. Hi thank you so much for sharing your story. I am doing research for my mother who is now choosing a procedure for a prolapsed bladder. Is it usual for a GYN or Urologist to do these procedures? Also what is the alternatives to the mesh? My mother’s doctor gave her some pamphlets, told her to read them, choose a procedure and come back in two weeks. He didn’t giver her any information.

    Like

    • Lucy… Thanks for looking into this for your mother. It is all very overwhelming, I know… and can be quite confusing. Mesh is being used by most GYN’s, Urologists, and UroGYn’s. They made is VERY easy for them to put it in.. .so, doctors that didn’t use to do these kinds of surgeries (because they use to require more skill), can now insert a mesh sling in an “easy”, out-patient surgery. The problem is that if/when there’s a problem, the problems are severe, and then hardly any doctors know how to remove the mesh or treat those problems. Please find a doctor that will do the surgery the “old fashion way” using your own tissue. Not as many doctors know how to do this… and, it may be a bit more complicated of a surgery than inserting mesh. But, it also does NOT come with all the added risks of mesh… AND it will last, and work just as well as repairs with mesh. You may need to call around to find a doctor for this – but, I personally feel it would be well worth it. Know that most doctors are NOT giving all the facts upfront… so, please be very careful.

      Please read and share with your mother this Top 10 post, as well as:
      https://meshmenot.wordpress.com/2015/11/29/doctors-who-do-not-use-mesh/
      https://meshmenot.wordpress.com/2015/05/31/are-you-a-good-mesh-or-a-bad-mesh/
      https://meshmenot.wordpress.com/2015/04/02/fda-warns-there-is-no-evidence-that-mesh-provided-any-greater-clinical-benefit-than-non-mesh-surgeries/

      You can also try asking around in some of the larger support groups (links to them at the end of those posts, and from the footer of this blog).

      Thanks, and take care ❤

      Like

  25. Hello. Thank you so much for all this information. I was due to have a mesh procedure in 2 weeks time (in UAE) and I saw an interview this morning on BBC News with a woman talking about how it has ruined her life, the pain, in a wheelchair, etc etc. and it TERRIFIED me! I was lead to believe it was so easy! My problem is I have a prolapsed bladder (but no incontinence)… I am just worried about gravity and eventually it falling out of my body! Pessaries have never been mentioned, so I think I will give that a go first – otherwise, I know of a highly recommended doctor here who will do the tradiitonal ‘stitch up’ but she did say to me it often is not successful long term 5-7 years. She actually sent me to see the Doctor who would do the ‘mesh procedure’.
    Thank you so much for your article…..

    Liked by 1 person

  26. im in the same boat i had mesh place in me 12 years ago i am having it removed soon what about scare tissue growing after all these surgeries ive had 7 my ammuine system is attacking my self im hoping this surgery brings me relief not more problems

    Liked by 1 person

  27. I believe they sneak in the mesh and or tell you its safe as I don’t trust my urogynecologist lets face it in for the money false hope , find a better solution as if it was a man’s problem

    Like

  28. Why are they still using mesh then ???????

    Like

  29. I have stress incontinence and my doctor mention the mesh surgery, the ring, or poise tampon. She claims she had patients with a high success rate. Contemplating, she calls this problem pain in the panty. Undecided tired of searching for a bathroom all the time and buying those pads, frustrated 😞. I want my life back.

    Like

    • Debra – I get it. But, if you really need surgery – you can have repairs using your own tissue. Not as many docs to this – but they are worth seeking out. Mesh is easier to put in, so MANY doctors use it – including ones who never use to do these types of repairs before mesh was around. But, IF you have some of these “not rare” problems – they are MAJOR problems. They make leaking urine look like nothing. And, hardly any docs can remove the mesh, or will help you.

      Please exhaust any non-surgery treatments first. Pelvic Therapy helps many. Or maybe the Poise… or a pessary. There’s many different kinds. And, IF you are still miserable – find one of those doctors that will do “traditional”, NON-mesh repairs. I would not wish mesh complications on my worst enemy.

      So glad yo are looking for answers and information. I know it’s overwhelming. Unfortunately, many of us learned the hard way you can’t just depend on your doctor to give you all the info. Especially when it comes ti mesh, it seems. Over 100,000 lawsuits and many more complications are not for nothing.

      Take care. ❤

      Like

  30. If this was a man’s problem it would be researched and solved I believe women are put on the back burner look up escala medical for pop would not be surprised if they buy them out the currently seeking fda approval for minimally invasive procedures

    Liked by 1 person

  31. Someone I kmow had a hernia operation done in 2002. And tge surgeon used the mesh.
    This person is suffering now from the mesh.
    Can u still sue the hospital after all these yrs. (15 yrs later).

    Like

  32. What does the medical profession care doctors all have malpractice insurance so they get sued have good attorneys well take a chance who really cares that’s my opinion just charge an outrageous fee to cover it we’ll still get rich

    Like

  33. Excellent write up Deb. Good information everyone should consider. I particularly like ” Don’t read the internet…”

    Like

  34. What about us that in the 1991 it was used for adhesions should I be concerned they used it because my ovaries and tube were grown onto my bowels with adhesions

    Like

  35. I’m hoping someone can help me . I’m lost in all this . I was suppose to go in and have 1 hernia fixed with mesh . But when they got in there they discovered I had 4 Hernia’s. So my mesh is from like hip to hip. Pretty sure he said he reinforced it to . It’s been 5 yrs . Since my surgery. Ive always felt sick to my stomach , pain all inside my stomach area all the time . When I tell drs. My insides are sore , or I hurt . They just tell me it’s because I’m probably constapated. Which is now a big factor for me as well since my surgery . Intercourse is painful as well . I just feel ucky all the time . Are there any tests out there , that drs can do to see if your mesh has done some damage to like ur insides or anything ? I just had another C T scan and found out that I have another hernia , a small ambilical one that has a small piece of my colon trapped on the wall of my stomach. But Dr. Said it’s nothing to worry about. So just wondering if anyone knew of any tests that could be done to see what’s definitely wrong inside , besides the bad mesh . I did find out, the mesh he used on me is on the recall list . And also the mesh they used on my husband is on the recall list as well . And he’s having alot of problems as well . Any help would be greatly appreciated.
    Thx

    Like

  36. I cannot seem to get an answer! My consultant has told me that if a mesh s put in through an adomnal hysterectomy then this won’t cause any problems as it would be implanted higher. Is this true. Many thanks Chris

    Like

    • Chris – Many are told what you mentioned .. and maybe the risks are smaller for mesh implanted through the abdomen – but, I don’t know that this is proven. Personally, I think the material is the problem – polypropylene – and it can break down/erode, etc., regardless of how it is implanted. This is why there are tons of people in the support groups suffering from the exact same kinds of major mesh complications that had mesh implanted through abdomen – and even from hernia mesh. =(

      If you are on Facebook, check out the public group, “Mesh Problems”, or “Mesh Period”. Please just scroll through all the commetns, reports, etc. Check out the files in the group, and/or ask questions.

      Also, please see this post: https://meshmenot.wordpress.com/2015/05/30/is-it-just-transvaginal-mesh-causing-problems/

      There is an medical article linked to from that post, that concludes: “Sacral colpopexy: long-term mesh complications requiring reoperation(s)“, concluding, “This case series provides a description of surgical interventions for complications related to sacral colpopexy. These complications may be serious and occur years after the initial surgery.”

      I hope you find a doctor that can do your repairs without mesh. Many women have hysterectomies, or other repairs, and don’t even know they are getting mesh until after they start having problems. Please be careful and chose your doctor carefully.

      Like

  37. Hi Deb
    After reading all these posts, I am now very reluctant to have surgery
    For my prolapse bladder. My surgeon will be using polypropylene mesh
    And will be removing fibroids and doing a partial hyrestorecmy. I prefer to live with incontinence than to be in constant pain.
    The pessary is working for me but I seem to be getting bladder infections lately..
    I am not sure if I should cancel my surgery in 2 months and try first physical therapy and loose some weight.
    Any feedback would be appreciated. .

    Like

  38. Hi Maria. After all I’ve been through, and see others go through, I would NOT get mesh or recommend mesh. I would always recommend any non-surgical options first – pessary, PT… but, if those do not work – then, I would find a doctor that will do the repairs without mesh. They use to do these kinds of repairs all the time without mesh. There are not as many docs that are doing repairs without mesh these days, but there are some – and more are stepping up because there are more and more women refusing mesh.

    Please keep asking questions and researching.

    And, please see this post, and the links to more resources at the end.
    https://meshmenot.wordpress.com/2015/05/06/finding-the-right-doctor-for-surgical-mesh-complications/

    I know you do not have mesh that needs to be removed, by often the doctors that are removing mesh and recommended by those suffering from mesh complications, are the same docs that know how to do Non-Mesh repairs as well.

    Like

Trackbacks

  1. Excellent Resource | mesh ministry
  2. Deb C's Top 10 Things to Know Before Mesh Surgery | Mesh Medical Device Newsdesk
  3. “Considering a Mesh Implant? You have better odds playing Russian roulette” | Mesh Me Not
  4. FDA warns there is NO evidence that mesh provided any greater clinical benefit than non-mesh surgeries | Mesh Me Not
  5. Is it Just Transvaginal Mesh Causing Problems? | Mesh Me Not
  6. Scaremongering or Just Plain Scary? – Mesh Me Not

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