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

When Doctors Lie (about removing mesh)

Midsection rear view of male doctor with fingers crossed

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-i-am-the-doctor-he-said-you-are-just-a-woman-and-clearly-know-nothing-of-your-own-body-this-pain-is-simply-in-your-head-305e5BUT, 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. doct-nottelling

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“,

placebo_effect-3-8“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:

 

deardoctor

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.

js38353692You 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.  

confuseddocBEFORE 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.

alone-gDon’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:

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 doctorsLawyer Ads are NOT enough. We need HELP!

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

 

 

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Categorised in: Mesh Complications, Mesh Removal

17 Responses »

  1. Great Blog! So true!
    Thank you so much

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  2. Thank you for posting this. I sent this article to my husband as soon as I saw it. I’ve already discussed with him about having everything completely removed the day after tomorrow by my urologist. He’ll be with me. I’ve made it clear that he needs to be my advocate for when I’m too doped up to understand anything before and after the outpatient surgery. Thanks again!

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    • Thanks Charity. I’m glad your husband will be there for you. Please take care, and I hope your surgery goes well & brings much needed relief. ❤

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      • Well, well, the jig is up, my urologist is an ass wipe too! I’m all prepped for surgery and waiting on the anesthesiologist to hook me up and my doc comes to see hubs and me. Long story short, he only snips the middle and removes just the sides of the tape around the urethra. I asked him about anchors and he says “there’s no anchors”. SOB might as well be a televangelist. He acknowledged that I seemed uncertain in my questions and he left me to think about it. I’m sitting on the bed, naked except for my gown and holding back tears. I start taking my stuff off and hubs mentions my I V. I described the person I needed to see in order to have it removed to my husband. She comes in apologizing and I tell her it’s not her fault. I’m getting ready and she asks if I want to wait to see him (he had other surgeries at the center today). I told her that I don’t want to see his effing (not quite the word I used), lying face ever again. She then tells us we can get our refund back and leads us to the desk. We get it and split. I’m about to call his office to cancel my post op appointment, and my gynecologist to cancel my yearly in August. She’s the one who encouraged me to see him and had him do the sling as she did my hysterectomy. So, if anyone out there knows of a good doctor who completely removes the urethral sling including all mesh, anchors and arms, please let me know. I live in west Tennessee. I know there’s Raz, but I’ve got a husband and two young kids. My parents are crazy and I will never entrust them to care for my kids again. I’m willing to look into all of Tennessee, Kentucky, Arkansas, Missouri, Mississippi, and maybe even Alabama and northwest Florida. Thank you girls for your help, I wish I had found you all last fall. I’m glad that I found you before this corrective surgery that would have made it all worse.

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        • In St. Louis, Missouri, there is Dr. Veronikis, who is one of the few mesh removal surgeons who many women in our support groups have had good luck with. He has done full removals for many women. I haven’t personally been to him, but if I had to have my mesh removed now, I think he is one of three doctors I would consider to do the surgery (Dr. Raz and Dr Hibner in Phoenix, being the other two.)

          Liked by 1 person

          • Thank you, Janet. I’ve seen a lot about the doctor in St. Louis. He’s just a little over four hours away from me. He’s already at the top of my list. Deb has taken out so much of the drama by doing the leg work herself.

            I had been struggling with the urologist I had for much of the six months I was his patient. He kept acting as though he didn’t make mistakes, but repairs other doctors’ mistakes. He intentionally had sent me home with meds that are known for causing heart palpitations, cold like symptoms and horrible achy pains in my side. When he and his staff found out that I stopped after four days they asked if I even tried taking the other meds that they gave me. They seemed upset that I didn’t. They were annoyed and said “we told you to take them.” It’s like I knew the sling was an issue six to eight weeks after I had it done, but he did all he could to not have to operate again. He did the usual “Well, that’s not normally the outcome” song and dance. I could tell that my questions in pre-op were ill received. I feel for his poor patients. Many of them are mature men and women and I gurantee you he takes advantage of many of them. He got a little taken back with my questions as though no one ever questioned him.

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        • I know you’ve posted updates.. but, I just wanted to say here that I am SOOOO glad you didn’t go through with that partial. And, it took some real courage and strength to get up and walk out of there. GOOD FOR YOU!!!! So glad you are now planning on going to Dr. V. ❤

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  3. Deb, I want to thank you for your blog and for the wonderful women who comment. You all have been so supportive and extremely helpful! If I had only found you last fall, I could have spared myself a lot of drama and pain. Luckily, I found you…PERIOD. I have been back and forth between Dr V’s office in St Louis, the hospital where I had the implant done in Memphis and my primary doctor here in the same county where I live. There’s been hours of filling out paper work, making phone calls and sending emails. I’m hoping that my referral goes through. I was pretty specific with an NP that I’ve seen at my primary’s clinic about what’s been going on with my urological health and how it’s affected my life. She said we’ll see what my insurance company says. I’m hoping that they don’t refer me to some random urologist in Memphis. The NP was asking specifics about who performed my procedure and I gave her his name. They shouldn’t refer me back to him, but might refer me to his dad who has the same name and practices urology as well. I will let you all know how it goes. Thank you so much for all of your help!!!

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    • As forewarned, my insurance referred me to see a gynecologist near me. One that is a “minimally invasive ob gyn”. I doubt if he even knows much about implants at all. I tried talking to Tricare Prime (my insurance) by phone. They told me that they needed proof of me even needing a complete removal. Even if they eventually approve Dr. Veronikis in St Louis, I am still expected to pay a $300 deductible and half of all of my medical expenses with the doctor. I tried calling that shit urologist who put this thing in me and lied about completely removing it (luckily, before I let him cut me open again) to find out that their main number is disconnected. I reached them by phone with no issues just this last week. The number is still up on their urological group’s website. So, I’ve tried messaging a kinder urologist (from what I’ve read on recent reviews of that practice) on their web site. I told him who I am, who I dealt with and how that person can’t help me. I told him that I needed their office to contact my insurance with their records so that I may be able to obtain help with this doctor in St Louis. I talked to Dr. Veronikis’ office for the second time this week today. They verified that my insurance needs proof. She said that a consultation is $300 (This fee is not my insurance deductible). She also informed me that Dr. Veronikis does those bladder tests that I hate on the first visit. That combined with the consultation comes to about $1,000.

      I’m so pissed!

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      • Woot,woot! After a couple of weeks of intense back and forth (in person, by phone and email) with Tricare, the health benefits person on the military base near me, my primary physician and Dr. Veronikis’ office, Tricare has agreed to pay for four visits with Dr. Veronikis!!!! His office just needs to receive the actual referral copy and he will review my new patient info packet, as well as my surgery records from last December. They just received all of that information from me within the past week. Then they’ll go from there and call me to schedule my first appointment. From my understanding, that initial visit is pretty much a half a day, or even an all day event. There’s the new patient set up, bladder/urinary tests, then my first consultation with him. I know Tricare says that they’ll assist in travel expenses for doctors that are outside of a 100 mile radius. I need to contact them to see if this will apply to my situation. I don’t see why it shouldn’t. I will probably need to wait until Monday to pursue that because the referral has yet to be sent to my email and it’s not posted on their site at this time.

        Woot, woot!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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        • Hi Charity – I am so glad you are able to get to Dr. V! He has helped so many. I sincerely hope you will also be one of the many singing his praises soon and that your surgery and repairs go as best they can. Are you in the support groups on Facebook? There are many who have gone to him that can probably give you some pointers. Please keep me posted and take care!

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    • ❤ Just replied to your other comment. Thank you for all your kind words and sharing here. Together, we can help others and make a difference!

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  4. Deb thanks for your blog and I’m so sorry to hear you went through this kind of neglect also.

    What’s worse is when your doctor tells you they ARE going to remove the mesh and DO NOT remove even a small piece of it, NONE and cover it up. Then every other doctor who saw you lies, covers up for them and you are ruined and your standard of care is non-existent. Will it ever come back on them? They may get a tiny slap on the wrist but that’s about it.

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  5. Everyone is forgetting slings do the same things to and when they steal a opp report ! Where s the proof same hospital that put it in takes out and puts in takes out over 19 years latter ! Your records there no stickers opp report missing from first 1996 surgery ! Why are they not in jail hiding the truth changing stuff lies your records destroyed yes here’s most archived with opp report missing!

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  6. The doctor that did my implant and “corrective surgery”is lying. He said he would make sure no one believes me and he sure said that right. They are all sticking with him. I had problems right away after the implant but no one would listen. We all know this story. I thought I was all alone. I have found that there are alot of people just like me. So very sad! I apologize that we all are going through this. It really gets me to hear that about people always asking for help but how you are like the rest of us. Sick people are to sick to help sick people. That is so true. Most people that do not have a MESH don’t want to hear about it. Thank you for what you are trying to do. By getting the word out.
    I am actually feeling that way right now about suicide. I want to live. Got alot to live for.I know that Father God has plans for us and this is suppose to strengthen us and build our character but when you hurt so bad, so sick, scared to death (not suppose to be, give it over to the Lord) no one to believe you. No where to go for help.Doctors, families and friends don’t believe you. A couple of family members believe but can’t do anything about it. Helpless also! When I tell people my story, even people in the mesh support groups don’t believe me!
    After about 19 months of the nightmares that followed, I finally got back to the doctor to have what I thought to be mesh removal but only got a revision. The doctor who implanted it also did revision.
    According to an obgyn doctor I was seeing, the mesh was rotten, eroded and protruding.( It cut my husband and he bleed.) He said he didn’t want involved with anything to do with mesh. He said I had to go back to the doctor that implanted it. (I am so gullible, I thought it had to.) After the operation, the doctor told us he could only remove a small portion of the mesh. I told him that I needed it all taken out. He said he had done all that could be done. We asked what I was suppose to do? The mesh had to come out! He said that the mesh had already attached itself to my body. After my husband had stepped away, the doctor told me, “I know you have a lawyer. (They had sent in a container to put the removed mesh in.) I am fed up with all you women with your lawsuits! Well I made sure you won’t live to see a settlement.” He stood close to the bed, he flicked his finger, and said angrily, “I flung a piece of the rotten mesh onto your bladder. I’ll make sure no one believes you if you say anything.” He snarled at me. He left the room.
    So fast forward. It took 15 more months to get another doctor to show us the mesh on my bladder. He changed his records that showed what he had found.
    I was then sent to therapy and told to insert medication into my vagina like that was going to help.
    I still need the mesh out of me. I’m also very sick with a lot of other life issues going on like you and the rest of the mesh world but I need advice about doctors, etc. I am trying to read what I can now that it is too late! Should I go to vitals and tell what he done to me?? I didn’t report him because of fear and….Unbelief that a doctor would do that….They are suppose to take care of you!!! It would not be slander because it’s true. I have to forgive him for this. I think I do but then I feel the injustice of it all! How many other people had he done things too? His rating is not good. That is just one of the things I need to know about doctors. Then a few other questions….just pray ALWAYS!
    It had now been 18 more months

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  7. I had 3 surgeons in the room when I had my surgery (thankfully) and when it was all said and done Dr. Kim came and said all the mesh was out! Then I went to my room and the other surgeon came in and said we were unable to remove all your mesh. On my medical reports it says she removed all the mesh but she didn’t. And I confronted her and she admitted that she didn’t.

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