Mesh-Injured People: NOT rare. NOT going away. NOT getting SUPPORT!

By DebCNY • 2015/03/12

Annoying Lawyer Ads: “Have you had Vaginal Mesh?”

Annoying TV Lawyer Ads

You know all those crazy lawyer ads you see on TV,  asking,”Have you had Transvaginal Mesh?”?  Well, guess what?   They are not just constant, and annoying.  They are also talking to real, live, people who HAVE had transvaginal mesh, and ARE hurting because of it.  And there are a LOT of them out there.  Thousands.

There are currently over 100,000 lawsuits against six different manufacturers.  That is just the number of lawsuits.  They are NOT possibly all “Lawyer-generated hype”.  There are thousands more reported complications.  And, many more NOT reported.   There are more and more people limping into doctor offices every day complaining of problems after having surgery with mesh.

Just as the FDA  reported that severe complications from mesh are “NOT RARE”, well, neither are these people.  They are NOT rare, and NOT alone.  And, other than the lawyers ads – they are NOT even being acknowledged much of the time, let alone finding a lot of support or help.

Most of them are NOT getting better.  So, they are NOT going away.  Not only that, but doctors keep implanting mesh all the time, especially for SUI and hernia repairs so there are MORE and MORE people turning up with complications.  The lawyer ads you see all over the TV are NOT just for oler, out-dated, no longer in use, mesh. I wish they were, but no… they are for all kinds… and most are still on the market and being used.

The mesh-injured need help!  REAL HELP.  And, I don’t just mean a lawyer.  They need DOCTORS that can actually help them, and they need SUPPORT.

Starting a Support Group.  How hard can it be?

So, recently, I decided I would try to get a local support group started for others dealing with mesh complications in my area.  I know that if it wasn’t for the support and information I received myself from other mesh-injured women I found online when I was at my lowest,  I would have wound up much worse.   I wanted to pay that support forward.  I knew how confused and alone I felt, and how helpful it was to find others who could relate.   I also wanted to share the resources and information I had learned.  Information not being shared by the medical community as a whole.

I started this Mesh Me Not blog as I was going through my own struggles.  Then, created the Mesh Me Not Public Facebook page.  As time went on, I thought a local support group would be really helpful to so many.   A place were people could meet face to face, talk, vent, share, and help each other get the help we need.   Why not?  There are support groups for almost everything/everyone else.  Lord knows we could use some support.

I remembered the first time I met others dealing with mesh complications in person.  It was at the Tiverton Hotel, near UCLA, where I had my mesh removal surgery.  We talked for hours. There is something very powerful about connecting in “real life”.  Later, I was able to connect with a couple people in my area, and not only could we relate to the issues and experiences, but we also knew some of the same doctors/hospitals/resources.  Sadly,I did not feel like I had a lot of local resources to share, because I personally had my mesh removed across the country in CA, and there really just are NOT very many  reputable doctors that are doing FULL mesh removals.

Without any prior experience with support groups, and never enough time, I decided to start up the Mesh Me Not – Upstate NY Support Group.    My hope is that, collectively, we can find better resources closer to home, as well as offer support to one another.  I also hope others will start their own groups in their areas.

Unfortunately, I quickly realized that while I’m connected to hundreds of other mesh-injured people from all over the world on-line, it is actually quite challenging to find others in my direct area.  Not because they don’t exist, but because the medical community doesn’t seem to want to admit they exist.

Can you hear me now?  How about now?  Now?

Most Urology and Urogynecology organizations, like AUGs, as well as doctors, physical therapists, and other specialists  – that often meet  and/or treat those dealing with mesh complications – act as though we are invisible.  They don’t seem to like to hear us mention anything about “Mesh”  when we limp into their office with pain and complications.   I remember one doctor literally rolling his eyes at me when I mentioned I had a mesh implant.   Many are quick to say you need to go see some other specialist – or to the chronic pain management clinic.  They wash their hands of you, rather quickly.  I have heard of patients, desperate for care, afraid to mention the word “mesh” to their doctor, because they believe that the doctor will treat them as if they are crazy, and/or not treat them at all.  Really?  How do you get help for something, if you can’t even discuss it rationally?

Ironically, more websites are popping up from doctors saying they specialize in mesh-removal non-mesh repairs, and pelvic reconstruction.  Some doctors are even joining our support groups.  They seem to want the mesh-injured individuals (complication support groups , pages, blogs, forums, etc.), to mention them in a good light, and refer our hurt friends to them.  That’s good thing, right?  Well, it’s good it they can actually help people.

There is no doubt that we need more doctors that can actually help, and to take an interest.  It does raise other questions, like, how many of these doctors ARE actually helping?   I mean, even if they WANT to help, are they capable of removing all the mesh?  And, if they don’t, is that really helping?  I have heard many women who go into surgery, thinking their doctor is experienced and will remove all their mesh, only to find the doctor only removed a small piece of the mesh.   Sometimes, they even implant more mesh in the process.   Women wind up having surgery after surgery, and more and more complications.  But, that is another topic…   

My point here (and I do have one) is that IF there are more doctors stepping up and saying they can help with mesh removal, and more of them actually doing partial removal after partial removal…  then, WHY is it that most of the medical community still does not want to admit we even exist?  Not publicly anyway.

Why?  What is it that makes so many doctors so resistant to discussing  mesh complications openly?
Is it peer pressure?  Because many of them, and/or their colleagues, are still advocating for the use of mesh?   Are they just in major denial?  Because if they were to acknowledge that mesh is causing so much harm, that would mean they would have to also admit they were part of ruining so many lives, and that is just too much to fathom?  Are they worried about losing money?   I’m referring to money from the surgeries, from research and clinical studies, or even from being paid consultants with the mesh manufacturers?  Are they afraid of all the lawsuits?  Granted, yes, there ARE a lot of lawsuits.  Over 100,000 lawsuits, actually, but those are against six different mesh manufacturers – not the doctors.  Are they being brainwashed by the Mesh Manufacturers?  The FDA?  AUGs??   Do they just not care?  Are they really still just completely in the dark about what is happening and the truth about mesh?   Do they think we, the patients, can not possibly know anything valid, and are not capable of understanding what they believe, and why they believe it?  

Whatever the reasons, it is clear that the majority of them do not want us to even mention the “M” word in their offices… or on their public Facebook pages… YouTube videos… websites… etc.    I know this, because I have had many of my comments deleted from such places.  God forbid you mention the FDA warnings and ask legitimate questions.  There are a few that will actually engage and respond, or allow me to post a link – and to them, I am VERY thankful!   There ARE  good docs out there.  I know this.  But, even many of the good ones seem to want to bury their heads in the sand, and just avoid the “mesh mess”.    

When they don’t want to help patients presenting with mesh complications, they are also not open to letting me leave flyers or any info regarding the support group with them, or in their office, websites, Facebook pages.  

I guess, the idea of people needing support for complications, that most of the medical community will not publicly acknowledge, is apparently just way too much to ask.

So, how do I spread the word, locally, about this support group?

I even had a website, that list support groups all over the country for all different health issues, tell me I could not list or mention my Mesh Support Group there. Why?  Because I am NOT affiliated with any doctors or health care professionals.  ??  Well, isn’t that special?  I mean, if AUGs or more doctors WOULD acknowledge the real difficulties associated with mesh, rather than just defending it and turning a blind eye, then maybe there wouldn’t be so many people who NEED support in the first place!

Instead, mesh-injured individuals are commonly bounced around like ping-pong balls between specialists.  All too often mesh is never even identified, or acknowledged, as the problem.  If/when it is, many are still told we they are “the only ones” having such problems, and rather than send them to one of the few experts that actually CAN remove the mesh fully, they are instead sentenced to a life of repeated surgeries, and chronic pain management. But, hey – maaaaaybe they will win a lawsuit, right?  A lawsuit that will most likely never come close to covering their surgeries, and related losses, IF/WHEN it ever actually does pay.   What  a joke.

If we build it, will they come?

I’m not giving up.  I’m starting the Mesh Me Not – Upstate NY Support Group.  Actually, it’s already started (https://www.facebook.com/groups/656468787809132).  And, I will keep finding ways to find others who need help.  And, they will keep finding me, as they already have been even before I started that group.  Slowly, but surely.   Because, they are out there.  They (we!) DO exist!

I know there are so many others doing so much more than I am to try to help others too.  More and more mesh-injured people are stepping up and creating their own websites, blogs, Groups, etc.  They are forming networks and support systems.  Working hard to make real changes, as well as to help each other.  If you are one of them, please comment and post links to your own groups and resources – I am happy to share them here, and anywhere I can.

I need help and suggestions.  I have a few other ideas on ways to get the word out locally about a support group, but, I’m also open to suggestions from anyone out there that has a local support group on ways to get it started.  Please leave a comment here, or email me at meshmenot.wp@gmail.com.  In the mean time, please share this information if you can.   Below is what I’ve been posting anywhere I can (and is often deleted).  Please feel free to cut and paste, or share this page.  Thank you!

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Are you from the Upstate NY area, and dealing with surgical mesh complications? Maybe after having pelvic repairs (SUI? POP? bladder?) or hernia repairs? If yes, please join the Mesh Me Not – Upstate New York Support Group! (https://www.facebook.com/groups/656468787809132)

We are looking to connect others in the Rochester, Buffalo, Syracuse, Albany and nearby areas so we can meet in person for support and information. I know you must be out there, even though so many of us are told we are “the only one” having such issues.

This group is NOT affiliated with any lawyers, doctors, or marketing agencies. This is strictly for support.

Please SHARE this info, and join if  you are from the NY area. Thank you!

https://www.facebook.com/groups/656468787809132

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