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Doctor Disconnect?

Surgeons at work, U.S. Army, Wikicommons

Surgeons at work, U.S. Army, Wikicommons

April 9, 2013 ~ 

Doctors say their credo is to put patients first.  Why then do so many women talk about the conversations they have with their doctors after they start to feel their implanted mesh is causing complications and not providing a cure?   Across the board doctors say something like this:

  •         “It’s not the mesh”
  •          “Give it more time”
  •          “You’re the only one”
  •          “I’ve never seen this before”
  •         “How is your mental health? Would you consider taking antidepressants?”

That is when they talk to women at all.   One women’s family emailed me with this:

“Jane, I am sitting in a hotel room here in Washington DC.  Flew in from far west Texas to see a doctor to consult about mesh removal for my mom. This doctor was highly recommended.   My mom is in such pain and has been for two years…the flight alone was hell.  She was a very active woman prior to having this put in her.

“This was a waste of time and money as the doctor here acted like this was no big deal and referred us to some urogynecologist in Albuquerque.

“Jane, I don’t know what to do.  I have never seen my mom cry like this.  I have never seen her so weak and scared.  No one in my web research will say with clarity who to trust.  I am flying back home tomorrow with my mom and I am more confused than ever. My mom is saying things like “I just give up.”

“What do I do?  PLEASE PLEASE give me any guidance you can.”

The woman left her phone number and email.  Her mother turned up in a cursory Google search to be who she claimed. I called the daughter and everything checked out. They went back home to begin their search again for some help.

I’m not a doctor or a lawyer. It is a very sad commentary when someone has to turn to a journalist and website creator for medical advice. I generally turn the women on to some patients who have advocated for themselves and now help others.

So why the doctor disconnect?  The commonly held professional oath “First do no harm” may not be considered relevant to today’s medicine, reports this PBS story.

One reader says she’s thought for days about the doctor disconnect – why doctors seem to be ignoring their female patients when they report mesh complaints:

        “It was as if the doctors didn’t have a damn clue on the complications from mesh. Who would have told them? Not the manufactures. They never told anyone. But how could the doctors not have started complaining and loudly to the medical device manufacturers when all these problems started happening? These are horrible, horrible, painful complications. I still don’t know why more questions aren’t being raised on using mesh in sexually active women. Doesn’t matter if it is POP or and SUI. I think the question is still out there that it should not be used in sexually active women. I just can’t understand why doctors are still so willing to use mesh. There are so many of us. Last count I saw was 16,000. Every doctor out there should have seen by now one or two of us. How can it just be ignored? How can they still be implanting a “permanent device” with no way to get it out, even though those of who have been so injured did just that. What is the AUGS plan for removal after such horrible complications? How are we injured women to go on with our lives? What is their plan to help us when it does go wrong and it will for many?”

Linda Gross

Not all doctors are ignoring their patients. We just saw an example from the Linda Gross v. Ethicon trial of a very dedicated doctor from Watertown, South Dakota, Dr. Clark Likness,  who stuck with Ms. Gross for years as she reported  her debilitating injuries. He reached out to other specialists to help Ms. Gross. Read about him during Day Three of the trial here.

Sometimes it takes just one person to begin a flood of conversation.  Thank you to Dr. Robert Bendavid for discussing his history with surgical mesh going from  an industry consultant to now performing surgeries at the Shouldice Clinic in Toronto. His story is here.

Are there other doctors who would like to comment on how they handle the mesh complications they’ve seen in their practice?

Thank you in advance.

 

8 Comments

  1. Patty says:

    Ive read at minimum 50 posts on topix from men and women alike who make the same statements about their doctors reactions to their mesh pain complaints. Its as if they are either clueless, or the doctors just. refuse to. Recognize the patients concerns about the mesh problem.

  2. Betty says:

    I have been lied to, by several Dr.’s – many of whom were “considered the best” by their peers that I was referred to. If it wasn’t for a mesh site that I found and other patients advice, I think I would be dead right now. It is so sad that we have to do our own research. That we live in fear of following a Dr.’s advice – not knowing for sure who we can trust. Second guessing their opinions. My insides are destroyed, I’ve had a enterocele, rectocele and cystocele develop after several mesh removal operations. My bladder leaks like a faucet that is on. A far cry from where I started, with a small amount of leakage from coughing or sneezing. My rectocele was repaired, but has returned and is worse than ever. I had SUI mesh, the one that the FDA has claimed has manageable complications. On top of this, I suffer from dysparunea, constant vaginal pain, perineal pain, and clitoral pain. I also get muscle spasms and have been diagnosed with pelvic floor dysfunction. To be told you’re the only one, that mesh cannot cause nerve damage (which I have), or that yes, you had a bad outcome, but this is very rare. How in the world can this go on in our country? I have lost my life, but not my faith. Many of us have been told “they’re writing the book on us” – meaning they know this is a mess and they are learning how to handle it from those of us who have been hurt by this. One Dr. actually said that he does not consider the FDA a reliable source for anything medical, so why report complications?? No wonder there is no knowledge out there – no communication among the professionals. The FDA is basically ignored, except when something finally reaches into their area of oversight. I believe the increase in complications that they have seen, were because women (men) who were searching for answers found out about the FDA 3500 form and took the time themselves to report. Shame on the Dr.’s who ignore this. I know in some cases the Dr.’s could be fired for not pushing the mesh and reporting issues. It is still a huge money maker and although the major pharmaceuticals are facing many trials and punitive damages, in the end the product will still produce profits, which is very good for the stock owners. This is criminal, immoral, and should be prosecuted. Until we start holding companies such as these accountable and not let fall through the “medical learning curve” crack. We will see much more of the same.

  3. The FDA/CDRH does an extremely poor job of confirming that implanted medical products are safe and effective. The legislation that authorizes their activity is weak and antiquated – 1976 – and the medical device industry lobby is strong enough to keep conflicted individuals in critical bureaucratic decision-making positions and reduce funding so that the agency is not capable of being effective. BUT the patients and the public are not aware of this. It would be better to not have the “sham” oversight and admit that this is a buyer beware situation. If you are harmed by an implanted device I suggest you contact Consumers Union Safe Patient Project and ProPublica Patient Harm Community. The goal is to prevent harm and to care for those who have already been harmed. The industry wants you to be invisible. Don’t be!

  4. tvtinfo says:

    Betty

    You’ve got it in one! It does make you lose your trust in doctors, the medical profession, medical ‘research’ and the medical and government organisations that are supposed to protect us. As Joleen points out, the FDA seems to be inadequate in the USA and here in the UK our very own drugs and device ‘watchdog’, the MHRA, is seriously failing us and the reporting system is totally voluntary and inadequate. It is indeed a “buyer beware!” situation but unfortunately the buyers, the poor women being sold this product, however subtely, are not even aware of the risks – until something goes wrong afterwards.

  5. The Medicine Health Regulator in The United Kingdom are a toothless watchdog who are sitting on the true number of figures relating to transvaginal mesh complications received from Parliament UK.

    This is what I received back as a reply: Our adverse incidents database for medical devices is based on individual reports sent to us by organisations such as manufacturers and hospitals or individuals such as healthcare professionals and members of the public.

    Although we have not incorporated the figures from NHS Statistics operations that involved the removal of mesh into the MHRA UK database please be assured that the data has not been ignored and we fully recognise that they are an important source of information that we take account of in contributing to the overall view of issues associated with operations involving vaginal mesh and tape surgery.

    Mrs Sally Mounter Senior Medical Device Specialist.

    They have 140 I received figures back from my member of parliament of nearly 3,000 mesh removals. What a cover up.

    Well Sally Mounter all I can say is that you should be sacked for not performing your duty in looking after the public at large.

    This is criminal that you have figures from The Parliament in England on behalf of the Meshies United Group UK and you are sitting on them while women suffer in silence and have no help from yourselves or the Department of Health United Kingdom.

    This is criminal this is borders on manslaughter and The Medicine Health Regulator in The United Kingdom should be shut down as the are not protecting the public in The United Kingdom.

    This is a total cover up about a barbaric operation that leaves women with no quality of life while the pharmaceutical companies are making millions of £££££££’s.

    What is the point of a public watchdog that sits on figures and does not put them on a database. These figures are from NHS Source Hospitals in England and they are just ignoring them. This Watchdog needs to be taken to court and to be answerable for the true figures of transvaginal mesh complications which they are hiding.

    To all women in The United Kingdom make sure that you register your mesh complications as an adverse incident with this toothless watchdog who is of no use whatsoever.

    Teresa Hughes

  6. Kathy says:

    It hit me today that if I was a doctor and implanted mesh into my patient I would at least follow up with them as to how it was working or not working. I do not understand the disconnect. It is inhumane.

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