When Doctors Lie (about removing mesh)

By DebCNY • 2016/04/17

I keep hearing about doctors who tell their patients suffering from mesh complications that they removed ALL their mesh, when they definitely did NOT.  When did it become okay for a doctor to flat out lie to their patient?  Do they think they are they doing it “for their own good”?  Does that make it okay?

The scenario often goes something very much like this:

First, the patient with the mesh implant/complications goes to a doctor, complaining of pain and wanting the mesh removed.   Maybe the patient has been doing some research, and decides they do NOT want a partial removal – they want a full removal.  Meaning, they want it all out, including the “anchors” or “arms” of the device.  Maybe, they don’t clarify, and neither does the doctor.  But, either way – the doctor agrees to remove the mesh – and after the surgery tells the patient good news;

“I removed ALL your mesh“.

Some doctors seem to be saying this, even though they most certainly did NOT remove all the mesh.  Still, they tell their patient their mesh is now gone.  The patient usually believes them…  and is happy with the doctor at that point.  Why wouldn’t they be?  They have been in pain, and they hope this will fix that.  They believe the mesh that was causing their pain is gone.  They may even feel better initially (although, not always), because sometimes removing a piece of mesh that was eroding and cutting into something (most often their vaginal wall, but not always) does give some initial relief.

BUT, what happens if/WHEN they start having more problems?  What happens if/when the remaining mesh continues to erode, etc.?   It could be a matter or days, weeks, months, or even years – but, it is common for the remaining mesh to resurface and continue to cause problems.  That is why so many women have multiple removal surgeries, and various problems.  So, what happens when they go back to the doctor complaining once again – after they were told that their mesh was already removed?

For some, they are lied to… Again.  They are told they must be imagining it.  That there is “no reason” for them to still have pain  – because “the mesh was removed” (not). So, hey? There’s no way it’s causing them pain, right?  (so, NOT right.)   Thus, the patient is made to feel like they are crazy.  Many are told, it is “all in their head”, and their suffering continues… and often worsens.

OR –  sometimes the doctor DOES admit after the fact, when confronted, that they did not remove all the mesh after all.  Often, they admit this because the remaining mesh is now visibly eroding again and there is no denying it.  They will then usually explain that they removed “all they could”, or “all that was possible”.  Yet, that is NOT what they told the person initially.  They told them, “they got it all”.  ?!

Often, the patient winds up going to a different doctor, who may do a 3D ultrasound, or translabial ultrasound, and finds out that they still have quite a bit of mesh left in them.  And, it may be bunching up, and/or eroding again elsewhere – causing yet more pain, more complications.  They often need more surgery.

Sometimes, they find that all the initial doctor did was snip the mesh, and removed a small section in the middle of the device.  The part they can get to easily, or the part that was actually showing that had eroded through some tissue.  This is called a “revision”, or a “partial removal”.  

Now, there are many doctors that will tell patients upfront that they can not/will not remove all their mesh.  They usually say it’s “impossible”, “not necessary”, and/or that it is “too dangerous”.   This seems to be the norm.   And, mesh IS hard to remove, because it is NOT meant to be removed.  It’s meant to be permanent (something many aren’t told upfront before implant surgery either).  Personally, I don’t agree that a partial removal is the answer.  Partial removals scare me.  I’ve heard too many stories of repeated surgeries, and worse complications after partial removals.  That is why I traveled from NY to UCLA in CA, where I did have all my TOT mesh out by Dr. Raz.   This was after the local UroGyn I went to told me it was “NOT possible” to remove the “arms” of my TOT sling that were in my groin area (where all my pain stemmed from).   They were wrong.  If you would like more information on partial removals vs. full removals please see this post,   https://meshmenot.wordpress.com/2016/01/24/are-partial-mesh-removals-the-answer-to-mesh-complications, and the links at the end of it.

But, that is not really what I’m talking about right now (which removal type is better).  No, I’m questioning why some doctors are lying?  Saying they removed “all” the mesh, when they know they did not? 

There’s a big difference between a doctor telling a patient they think a partial removal is better or all they can do…  and a doctor telling a patient they removed all the mesh – when they did NOT.

In some cases – perhaps the doctors truly believe they did remove all the mesh, but then missed a small piece. I can see that happening, since the mesh is truly so hard to remove. However, SO many women have reported that their doctor told them they removed ALL the mesh, and then the women find later that they did not remove hardly any.  I know that accusations of lying are pretty harsh.  However, I find no other explanation for what I see as a trend. I do not see how a doctor could THINK they removed all the mesh, if/when they only removed a small portion.  So, why are they saying they got it all?

I have to wonder if doctors don’t just tell patients with mesh complications what they think we want to hear sometimes – hoping it’s all in our heads and that if we believe the mesh is out, we will stop complaining about it. Which is, of course, insulting.

Not only is it insulting, but it is also dangerous because it just prolongs and health issues to escalate.  Patients are sent on wild goose chases, and wind up trying to treat a myriad of problems, rather than dealing with the root of the problem. They often wind up permanently disabled.

What gives doctors the right to flat out LIE to patients about how their surgery went?  Is there some doctor rule-book someplace that tells doctors this is the thing to do whenever they can’t fix something?  Or if they don’t believe the patient?  Even if they believe their lie will help, does it make it okay?

As I mentioned in my post, “Finding the Right Doctor for Surgical Mesh Complications“,

“some women report that they later discovered their doctor had flat out lied – by telling them that they did remove it all, only to discover later (usually when problems continue to worsen) that the doctor only removed a small portion.   It’s almost as if they believe it’s all in our head, and so if they tell us it is all out, we will miraculously get better.
Sorry docs.  Mesh doesn’t work like that!”

And the thing is  – I keep hearing this kind of thing over and over, from women in the support groups (like the public group: “Mesh Problems”).  Women that are living in various places.  So, it’s not just a few doctors doing this, it is MANY, from all over.  And, it seems to be happening more and more.

I hope some Urologists, Gynecologists, and UroGynecologists happen across this post.
Because, If I could, I would like to say the following to any doctors that
A) do NOT believe mesh complications are that serious, and/or
B) think that telling a patient they removed all the mesh, when they know they did NOT,  is a good idea –  for whatever reason:

 

Dear Doctor, 

Mesh erosion causes REAL pain.  Mesh cutting (eroding) through your private parts, groin area, etc., is NO joke.  It is NOT minor pain.  It hurts! Mesh is not inert, it hardens, and it can cut through sensitive tissues, muscles, nerves.  It erodes/cuts into bladders, colons, urethras, causing infections, FBR, inflammation, and snowballs into other severe complications, causing REAL pain! I know this, because I experienced it first-hand.  I also talk to women all the time that are desperate for help.  Their life, and their families lives, are shattered because of a “minor, less-invasive surgery” to fix a problem that could have been fixed just as well without high-risk mesh.

You can NOT make these serious issues go away by telling them that the mesh is all gone if, in fact, it is NOT.  We need REAL help.  And, we need mesh REMOVED for real!  We really need doctors to STOP putting it IN – but, once it’s in, and there’s problems – we need REAL answers.  Not BS.  Not a placebo statement that you hope will make (what YOU think to be minor, or imaginary pain) go away.  It is NOT imaginary!  It is NOT minor.  It does NOT just go away.  We wish we could imagine it away, and “out of sight, out of mind”, and all that – but, that is impossible because  mesh hurts!

Doctors that specialize in mesh complications have stated that the longer the mesh is in, and the more partials that are done – the more difficult it is to find and remove the remaining mesh if/when there are problems.    Yet, when most women go back to their implanting doctor complaining of pain/problems, they are told to “give it time” and to “wait”.    (I wrote about this here as well: https://meshmenot.wordpress.com/2014/11/23/partial-vs-full-mesh-removal-surgery)

Of course you do not have to agree with them… And, you certainly don’t have to believe me.   But, PLEASE – do NOT lie to someone about their mesh removal, and expect them to believe YOU.  

BEFORE surgery, if you can’t remove the mesh… have no intention of removing it… or think it’s too dangerous – (like so many docs are telling people) – then SAY THAT.
Don’t say you will remove it all,  when you know you can’t/won’t.  

If you tell a patient you will “try” to remove it all – and you mean it – but then find that you can not get it all out – then,  let them know that AFTER their surgery.   Tell them how much you removed, from where, and what part is left, and why.

Don’t tell a patient AFTER surgery that you “got it all”,  when you know that you did not. Polypropylene mesh doesn’t just dissolve.  So, if you didn’t take it out – it is still IN there.  If you just snipped it, and covered it back up… there’s a good chance it will continue to erode, eventually resurface and continue causing pain/problems.  And the patient should know what to watch out for.

Don’t assume if a patient thinks the mesh is all gone – they will be fine.  Mesh complications are NOT mental, and there IS help out there.  So, you are NOT doing them any favors.   You are making them feel crazy, alone, and most likely they will go to more and more doctors that can’t help them, wasting precious time and energy.  Rather than finding a doctor that specializes in mesh complications that might actually be able to help them.

If  a patient presents to you with mesh complications, and you are not prepared to remove it… or can not… or just don’t want to get involved  – then SAY THAT.  Maybe, you could even refer the patient to one of the FEW doctors that CAN do full removals – and are actually helping people with severe mesh complications on a regular basis. Maybe mention a support group where they can get other opinions, information, and support.

Please know that ALL kinds of mesh, used for SUI and POP, are causing major complications.  NOT just the older mesh kits.  Even the newest mesh products, like the mini-slings, are causing major problems and are in litigation.

Please understand that mesh causes many complications other than the most common one –  vaginal erosion.  Many can’t walk, due to muscle or nerve damage and pain from mesh cutting through groin/obturator, etc.  Many have infections, or autoimmune type problems.

Please know that most tests will NOT show mesh.  They need a 3D ultrasound, or translabial ultrasound to “see” the mesh.

Please, please, please stop telling patients they are the only one having mesh complications.  They are FAR from the only one.  I WISH there were just a few odd-ball exceptions, but mesh complications are “NOT RARE”.  This is according to the FDA, the 100,000+ lawsuits against several manufacturers, and all the personal testimonies in the ever-growing support groups. This is NOT just all “lawyer generated hype”.

If you would like more information please see posts like these, where I also have links to the actual FDA warnings, studies, and more:

• Are you a GOOD mesh? Or a BAD mesh?
• FDA warns there is NO evidence that mesh provided any greater clinical benefit than non-mesh surgeries
• SIMS (Single-incision Mini-slings) Cause Mesh Complications Too
• It’s NOT enough. We need help!

Also, please check out the PUBLIC Mesh Problems group on Facebook, and see/hear for yourself all that these people are dealing with.

Please know that I am NOT trying to start a war on all doctors.  I am very fortunate to have been able to find, and get to some very good doctors who I actually feel saved my life.  We need doctors to work WITH and HELP those who need it, rather than defend faulty products and manufacturers.   When push comes to shove, the manufacturers are the ones trying to blame the doctors. 

I know there are many good doctors  out there.  I know most doctors MEAN well.  I am just so tired of hearing so many stories, from so many desperate women, who are not getting help.  I also know we need more doctors that can actually REMOVE mesh in it’s entirety, including the “arms” or “anchors”, and that will do repairs withOUT mesh.  If you are one… or know of one… please let us know!

Thank you for reading!
Deb

 

 

=====================Related links==============

• Top 10 Things to Know About Mesh BEFORE Having Surgery for POP or SUI
• AUGS – Addressing mesh complications and helping patients? or just defending mesh?
• Lawyer Ads are NOT enough! We need HELP!
• Are you a GOOD mesh? Or a BAD mesh?
• FDA warns there is NO evidence that mesh provided any greater clinical benefit than non-mesh surgeries
• Is it Just Transvaginal Mesh Causing Problems?
• SIMS (Single-incision Mini-slings) Cause Mesh Complications Too
• Are you Sick and Tired of Lawyer Ads about MESH?
• Top 10 Myths Woman are Told Today about Pelvic Mesh
• Finding the Right Doctor for Surgical Mesh Complications

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

• Women’s POP/SUI TVMesh Complications Support (Closed Group)
• Fighters And Survivors of All Transvaginal Mesh And Hernia Mesh/Plugs (Closed Group)
• Mesh Me Not -Upstate NY (Closed Group)
• Mesh Problems (PUBLIC/OPEN TO ALL, including doctors, etc)
• More resources listed on the footer/main page of this blog!

Tagged as: doctors, doctors that lie, full mesh removal, impossible, lying, Mesh, mesh complications, mesh removal, mini sling, miniarc, not rare, only one, partial mesh removal, partial removal, Pelvic Organ Prolapse, placebo, POP, Research on Mesh, revision, Risks, sling, Stress Urinary Incontinence, SUI, surgical mesh, too dangerous, treatmemt, TVM, TVT, warnings

Categorised in: Mesh Complications, Mesh Removal

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