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2) The Lawsuits all over the TV are NOT just for “older”, “outdated”, and “no longer in use” mesh.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

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 on you 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.

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, or  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 invasivt/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 find 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. 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 removes mesh.  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:

——————————
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.

 (link to PDF for this article)


==============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: 

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Categorised in: FDA, Feature, Mesh Complications, Mesh for SUI vs POP, Sales & Marketing

38 Responses »

  1. brilliant Deb! had thousands of us read this before beng meshed we mght not be crippled with pain and illness…..

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    • Thanks Jacqui – I added a link at the bottom of the article to print or view as a PDF too as you mentioned in your other note. Thanks for the idea. Maybe others will find that useful too.

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  2. Thanks Deb… well written, informative. Will share!

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  3. Deb, this was a great read !!!!!!!! I believe none of us would be here today had we been told all the truths you just told. I know I for one would have said NO if I had just been told one fact: there is a possibility of erosion into your vagina ! I would have said thanks but no thanks… I loved sex ! Loved making love to my husband if 27 years… Now it’s all changed… 😦 it’s slowly coming back , it will never be like it once was , but I thought I had lost it forever, so on the upside I just need to give it more healing time. Crazy , you can give birth to a Baby and resume sexual relations after 6 weeks and all is good… After mesh removal, it’s now been 6 months and I am still working on it 😦 Something is messed up that these Dr.’s won’t open up their minds and listen to us victims !!!! They have no clue to the pain they are causing..

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    • Dawn – I hear ya… They act like mesh eroding through your vaginal wall is no big deal or something….???!?? >:? Hello? How is that NOT a big deal?? I am glad you were able to go to UCLA to get your mesh removed too… and, while I know that is not an immediate fix-it solution, I do hope that in time you regain most of what mesh took away from you. ❤

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  4. Hi Deb, this is a great blog. My story has some similarities to yours – except I thought I’d had a long journey to have mine removed until I read how far you’d travelled! Well worth the trip by all accounts.

    I’ll be doing a post or page shortly with updated links for support sites and blogs and will add a link to this site.

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  5. Has anyone had problems after surgery of water retention from waist to ankles, gets worse when sitting?

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    • Anne – I personally have not had this. If you don’t get more feedback here (as this blog is fairly new and doesn’t get a ton of traffic) you might want to try one of the support groups or forums listed below under “resources and links”…

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    • Hi Anne, my name is Carla. I had a hysterectomy in June of 2009 and since that time, I have suffered with swelling from my waist to my feet with unexplained answers. However, my swelling and pain worsens the more when I’m on my legs and feet for long periods of time. I can’t enjoy family outings anymore because of it. I have had test after test and it w a s found that it is not my heart nor is my kidneys I was told that I’m just one of those cases where there is no answer.

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      • Hi Carla. So, when you had your hysterectomy, did they use mesh for repairs? If yes, the mesh could very well be causing your pain and issues. Foreign Body Reaction, which causes inflammation, is a common complication of mesh.. .as well as erosion – where the mesh could be cutting into nerves, muscles, tissues, etc… If you are not sure if you have mesh, or what kind of mesh, you can request a copy of your surgery/medical report and it should be on there. If you do have mesh, I would also suggest making your way, somehow, to one of the few doctors that really understand mesh complications and also know how to do full (or as close to full as possible) removals. There are only a few doctors like this, unfortunately… like, Dr. Raz at UCLA or Dr. V in St. Louis….

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    • I have been swollen with out relief for 3years now ,from the waist down was coming and going then it came and stayed,now swelling waist up coming and going ,very frustrated .Had mesh taken out 5 yrs ago after only being in 10 months had 4 procedures and finally removed (supposedly ) by the same doctor who put it in ,when all my test for everything possible for swelling came back normal ,Im like ok then what’s causing this swelling and how are we going to fix it ,my team of 5 specialist said we don’t know ,,ok if this was you living like this I think you would want a better answer ,a cardiologist ,urologist ,vein specialist,nepherologist ,and gyno doctors have put me through every test possible ,done several procedures ,taken all kinds of meds etc etc etc now I have had enough what’s causing this after much research I am convinced the only thing it possibly can be is the mesh was not all removed ,none of the doctors will even look into this as being the cause .One even stated you had it removed well I had what he could get out removed,he said uwell that was 5 yrs ago upon which I let him know yes it was and 5 yrs ago is when my nightmare with swelling started ,,and walked out .So I truly believe swelling is from mesh left in me too many articles blogs etc support that fact as well

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  6. Deb, this is a great article. And pretty much describes my experience exactly. Three years ago, I was 40 years old, married, 4 great kids, healthy, active, and happy. Just as you described, when I had a bladder prolapse that needed repair, my doctor quickly pushed the mesh surgery. And said that while he was at it, he “might as well throw in the mesh sling,” since I leaked slightly when I coughed. Never spoke of complications. No warnings. And then life became hell. Sharp, jagged urethral pain so abrasive that I couldn’t even touch my legs together. Having to self-cath. Vaginal pain because my pelvic muscles all went into spasm (feels like a charlie horse – imagine having that in your vagina 24/7 for 6 months!). Countless different nerve pain and muscle relaxant medications, which cause a long list of side effects. And nerve damage so severe that, even after 6 more surgeries to remove the mesh and deal with the resulting damage, I still cannot sit, have sex, return to work, or even walk normally. And it may well be permanent. I think the thing that bothers me the most, though, is that when I started to have this pain shortly after the mesh was implanted, I was told “it can’t be the mesh” and “it’s all in your head” and “you’re the only one who has ever had problems with it.” Now I find out that 20,000+ women suffered the exact same complications. Life-altering complications. And it could have all been prevented. It is frustrating. But I try to be as positive as possible, to do as much as I’m able to do, and to be thankful for my wonderful family and friends who have been so supportive. As difficult as I know it is to talk about this problem (especially because it occurs in such a private part of our bodies) I think all of us who have been physically, emotionally and financially ruined by surgical mesh need to speak up to stop it from happening to more women.

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    • Janet B – Thank yo so much for your comment, and sharing your experience… although, I’m so sorry you have had to go through all that, and continue to suffer due to mesh complications. It is frustrating and just plain sad that this is happening to so many…. The part where you get the run around and made to feel like you are alone really bothers me because that happened to me too, and to so many others I talk to. It’s like, the whole medical community is in denial sometimes. You are definitely not alone.

      When I finally went to Dr. Raz, it was such a relief because he actually KNEW and UNDERSTOOD exactly what was happening… AND, he could do something about it. Is there any chance you could find a way to UCLA to see him, or one of his associates? I know he has helped other women who had umpteen partial removals and were told there was nothing else that could be done… but, he was able to help them. I believe the other doctors he’s working with (Dr. Kim and Rodriguez) also have very good reputations for this.

      There are also support groups in the links I have listed on this blog that if you are not familiar with, you may want to look into. It can help to talk to others who can relate.

      Please take care & thanks again,
      Deb

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  7. Anne and ladies, the water retention is Lymphedema. When they remove the mesh, lymph nodes get cut out. If you look at the map of the lymphatic system, you will see that the area is rich in lymph nodes. You need to get treatment from a Lymphedema therapist ASAP so the Lymphedema doesn’t advance and harden. The therapist can teach you how to express the lymph fluid manually. I got abdominal Lymphedema and also Lymphedema in my leg from my last mesh removal surgery. It does get more swollen from sitting. It helps to wear compression garments. You can get credible and helpful informatiion on the NLN (National Lymphedema Network) web site. So many mesh victims talk about abdominal/leg swelling and pain. I can’t understand why doctors are ignoring the Lymphedema. For me, it wasn’t even on the pre-op warning for the mesh removal surgery.

    Mary Pat

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    • That’s interesting, Mary Pat. Thank you for the information. I have not experienced water retention after my mesh removal, or heard about it – but, I have heard so many things than nothing much surprises me.

      Everyone I know who had *full* mesh removal with a mesh removal specialist, like Dr. Raz, (including myself) is doing much better post-op than they were before mesh removal surgery. Many still have pain or complications ((including myself) but it’s from the damage done before removal from the mesh. I can not say the same thing for women I’ve talked to who had partial removals. Many of them have relief initially, and then wind up even worse than they were before the partial removal. Matter of fact, many of them wind up having partial after partial and get worse and worse… and the lucky ones wind up going to a specialist like Dr. Raz anyway eventually but often, by then, so much damage has been done. =( This was why I opted to skip the partial removal and fly clear across the country to go to Dr. Raz who would do what other local doctors told me was impossible – full removal.

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    • The swelling I spoke about earlier in another posting was at one time thought to be Lymphedema got the compression hose ,wraps and a machine called a lymphedema pump used all and did nothing so therefore the doctors ruled out mine being lymphedemaome ,,but you are correct theres a possibility one can develope this after surgery ..have you had a pump machine at home while it didn’t help me ,since that is not what I dohave it did help with leg pain for a short time ,,it might help you with your lymphedema ,I know im ready to be normal size again

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  8. Awesome! I was imagining myself in that doctors office with such excitement in the hopes of a better life and to be able to jump on the trampoline with the grandaughter again! I have a vivid memory of jumping with my granddaughter one evening and peeing all down my pants. Thank goodness I was wearing black and she was very young. But that helped help decide to have the surgery because I wanted to be able to be jump with my granddaughter and not be worried about peeing on myself. How I wished my surgeon had told me the risks, I would have ran like hell as fast as I could! Now I can barely walk straight most days. I will jump again next time with my 4 grandbabies! I am having surgery in Oct at UCLA by Dr Raz. I look forward to that day because to me it signifies the beginning of a new life. Blessings~

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    • Thanks, Barb. Yes, we went from having just a minor problem, to having major quality of life issues. So not worth it… especially when they can fix problems like that WITHOUT mesh. I’m so glad you are going to Dr. Raz, though. He is awesome! =)

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  9. This is the best read on this subject. It took me hundreds of hours of research to come by the info in this one article.

    But I was able to get the mesh out by going to Dr Raz. I am doing much better now. Going in for surgery next month to have Dr Raz use my own tissue for support.

    Newbys need to read this one article to get a handle on mesh. Do not believe your Doctor. Five different Drs lied to me. I had a hard time coming to this concusion. Relief can only happen after a full and complete removal. Partials make things worse.

    Go see Dr Raz everyone.

    Bev

    Like

  10. Thank-you for this wonderful article. I’m a 33 year old mother of 2 who has POP. I have been doing my research online because personally I do not trust my life to doctors. I went in to see a urogynecologist who simply downplayed my symptoms and patronized me and said I needed to have 3rd degree uterine prolapse to have the issues I was describing. I felt belittled and will never let a male doctor tell me what a woman’s body can or cannot feel. At the end of my appointment he coyly told me he’s a surgeon if I was willing to get my issue resolved without mentioning any other options. What happened to surgery being a last resort? He did not even insist on a pessary or anything other than surgery. Open up your eyes people doctors are not messiahs and can be ignorant, greedy, non-caring bastards. I feel for all the women impacted by mesh complications and my heartfelt wishes go out to you.

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  11. I totally understand the pain. I had mesh placed in 2011. My life has not been the same since. Reading this and watching that video only makes it more real to me. I see several doctors s month and I have had infections that I was hospitalized for. I cannot have sex. I was sent to a pain specialist and to a neurologist the two of them are still trying to cure my pain . My leg and groin and butt hurt so bad my pelvic region hurts and I cannot stand up straight. I limp now. I cannot work . I have lost so much family time due to not being able to walk long distance . I feel it the mesh stabbing me. I have loads of rectal pressure feeling like I can’t go #2 unless I stand up. No its not the pain pills because I eat prunes and take fiber to help with that issue. I cry and cry daily. I’ve been in circles with these darn doctors and I saw a surgeon who wants me to do pelvic floor therapy before my removal but the surgeon cannot take all the mesh out. I’m terrified . I cry anytime I see a commercial if it just happens to come on about mesh. I have panic attacks. This has affected my children husband and parents. They don’t want to see me like this or hear me complain constantly. If you only knew my story you wouldn’t want to live. I never in my life would kill myself but I get random thought of just dying by pulling out in front of someone while driving. That’s horrible. Suicide isn’t taken lightly by me and I’m only 43 . I have so much to live for. My husband and children 3 adults and one teen and my grandson. We women need help. My life is no longer what I want it to be its all pills therapy and doctors.

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  12. Hi Kristine
    I just read your story and it was like reading my own autobiography, I have 2 sons and they are grown as well and I have 1 grandson ( who is the love of my life)

    I to have thought so many time of taking my own life because I can’t be the wife my husband married any longer and I can’t run and play with my grandson like I did before they put this crap inside me,,, I can’t work anymore either and that has put even more of a strain on my marriage,

    I know he can’t continue to live this way much longer and I can see it in his eyes and hear it in his voice and he tells me how much he misses the girl he married.

    Don’t get me wrong he has been a true angel since my surgery in 2010 ( bladder tact ) I became instantly sick so I was hospitalized and due to so many complications I had my first revision in 2011 and another in 2012 and many others over the years !!!! But the damage that the mesh has caused is permanent so now at the age of 45 my life is over as I knew it .

    I have had so many suicidal thought myself and even played them out in my head however being raised Christian I know that suicide is out of the question because even though this life that I live now is pure HELL !!!! My after life would be even worse, and I know my son’s and grandson would never forgive me for leaving them in such a selfish way, So Kristine I just wanted to say thank you for sharing your story with me because sometimes I feel that I am in this world all alone and nobody could ever understand what I am going through and then I read this story so thank you,,,,

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  13. Kristine & Darcy,

    My heart goes out to both of you. Unfortunately, no – you are both far from alone. The damage this mesh does to our bodies, our minds, our lives, and to our families lives is hard for anyone to grasp that has not lived it. Even myself, I have only tasted a portion of just how bad it can be… even though I’ve had 3 surgeries in 2 years, and was on a crutch or cane for over two years, and felt like my whole life was turned completely upside down overnight – I still know I am one of the lucky ones. I was able to get to one of the best doctors around, if not the best, for mesh removal – Dr. Raz – and I was able to get the mesh out. No, it wasn’t easy. Yes, I still needed an additional major surgery on my hip. No, I am not completely better…. BUT… I am soooo much better than I was a year ago… 2 years ago… after they put the mesh IN me. I do feel like I’m getting my life back. I know that had I not made it out to UCLA to get the mesh out, I would only have kept deteriorating. I only hope that you can also find a way to get to Dr. Raz or one of the other few doctors that will remove the mesh completely (or as close to completely as possible). Most docs won’t even try and I think referring us to pain management saying there is nothing anyone can do is such a crock! Just because THEY do not know how to remove the mesh – doesn’t mean that nobody can. It is major surgery – so, best to go to someone with experience doing it anyway and not someone who admits they will just “poke around and see what they can find” (Yes, a doctor actually told one woman that). Partial removals can make matters much worse, so best to go to one of the few experts who have a proven track record that have the tools and experience to remove the mesh. But, I truly believe getting the mesh OUT is the first step towards making any real progress with pain management etc.

    Also, if you are not members of any support groups, there are some really good ones on Facebook, and mentioned on the bottom of this page. It does help to know you are not alone, and many times you will find others who not only can relate but have found a way to make the impossible, possible. Know that your families love you, and even though this may be hard on them… losing you would be even harder. Please hang in there and keep venting… keep talking… and take care.


    Deb

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  14. I need immediate help. I’m having sever pain and complications from the mesh implant. Does anyone have swelling all over? Painful sex, constipation and reoccurring UTI infections? I’m miserable and in a lot of pain. My doctors don’t believe it’s the mesh but are treating me for all kinds of issues. Ugh

    Like

  15. Just doing a bit of research because my instinct is to avoid any kind of surgery for my level 1 POP and stumbled upon this website. I cannot thank you enough for the reality check you provide here – and for the women so boldly sharing so many intimate details of their suffering and experience with mesh implants. I will tell you now that you have saved a life today. Mine.

    At 39 with 5 children and a husband I adore, I cannot imagine if I had allowed that to be taken away from me as I know it by not doing my own research on mesh alternatives. If you were not here waving a big red flag in the face of established, misguided medicine, I may have been here in 6 months with a similar story.

    It would seem that there must be some way to stop this product from being used – we have done it for decades with others. I hope those of you suing the makers win and put this product on the shelf next to so many others that killed and maimed people for decades before being pulled from the market.

    Thank you for your selflessness, your candor and your advice. I will keep you and your families in my prayers.

    Like

    • Jo – Thank you for your visit, and comment. Mostly, I’m just so thankful you said you will NOT be getting mesh. That is really my main reason for having this blog – to warn other people before it’s too late for them. Mesh is simply NOT worth the high risks. Try pelvic PT… try a pessary… and if you really need surgery, please please find a doc who will do it the “old fashion way” using NO mesh and only your own tissue.

      Thanks again and please take care.

      Like

  16. I came from having my presurgical consultation today. I am a veteran and it has been a long, hard fight just to be able to see a Urogynecologist outside of the VA. I was offered the mesh surgery but it didn’t feel right to me. I asked about sutures and I was told they won’t hold. I asked about using my own skin/donated or animal skin. I was told it was too complicated to use my own skin and any other skin/fascia would be rejected by my body. And I did get the don’t worry about all those ads on TV. That is only old products not the new material that is FDA approved. I have opted to be fitted for a pessary ring to see if that helps. I have also read myofascial release has been successfully used to improve stress incontinence symptoms. I have found a wonderful therapist and have had 1 session with her. She said if after 3 visits I do not find improvement that it may not work for me. I am willing to try anything, but I will NOT being have a bladder sling with mesh after reading this article!! Thank you and everyone that has responded to this blog.

    Like

    • Laurie,

      Thank you so much for your kind words. If anything in this blog has helped you to come to the conclusion to NOT get mesh – that makes me very happy.

      I’m so glad you are trying everything else before surgery! That is what they are suppose to recommend – but, often do not. And, if you If you really do need surgery, know that there ARE doctors that can do repairs using your own tissue… sometimes fascia from the thigh is harvested to make a sling. This is what they did for YEARS before mesh. The problem is, mesh is MUCH easier for doctors to implant and so many doctors are doing these kinds of surgeries that normally would not have before – because it was more specialized and took a more skilled surgeon. Now, every Urologist, GYN, and UroGyn is doing these mesh surgeries. They ALL Know how to put it in… but, only a couple now what to do if/when there are complications. And many new doctors are not even being trained anymore on how to do the surgeries the “old fashion way”. Which is so sad, especially when there is NO evidence that the mesh has any benefit over natural tissue (other than being easier to implant), AND it brings all the added risks of mesh erosion. But, there ARE doctors who do not use mesh, and can help with surgery, if/when needed. You just have to find them.

      If a doctor tells you the mesh will “last longer”, or that they only use the “good mesh”, or that mesh is your only option, I would ask if they EVER do non mesh repairs, and if they even know how? Actually, I would just find a different doctor… and maybe show them these articles… and the links to the FDA warnings in them…

      https://meshmenot.wordpress.com/2015/04/02/fda-warns-there-is-no-evidence-that-mesh-provided-any-greater-clinical-benefit-than-non-mesh-surgeries/

      https://meshmenot.wordpress.com/2015/05/31/are-you-a-good-mesh-or-a-bad-mesh/

      Anyway – best of luck to you, and thanks again.

      Like

  17. I had a tumor side of the head Thay operated remove the tumor Thay put mesh in side of my head but after 2 days the side of my face was hurting couldn’t eat paid real bad Thay had said it was the mesh Thay operated again to this day it still hurts especially when I eat. What are the things that I can do?

    Like

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