Mesh & Disability

Every day I get up, and the emails and comments come in.  I so appreciate those comments you leave here because it lets other women know that they are not alone.  Your story is their story.  Your suffering is their suffering.  My story is your story.  I often think “There but for the grace of God and other wonderful women who share their information, go I”.  If we do not learn by this, the tragedies keep coming.

In the last two weeks I am so sad to say that two women contacted me who just HAD this surgery.  When complications are so new life becomes a long struggle of pain and anguish.  Our work will never be done until every woman is given the true and honest information to warn them that serious complications happen all the time from bladder sling surgery.  To remove it is almost next to impossible.  Doctors put it in every day and yet they do not tell you that they cannot remove it.  That is why I am still here beating on my keyboard to get the word out.

However, today is about passing along new information.  To help you understand what you can do to help yourself.  I know if you find this blog you are at the end of your rope and are barely hanging on.  You have been told it is NOT the mesh in your body.  You have been told that it is all in your head.  You have been offered pain killers, antidepressants or plainly told you need to see a shrink.  Yes it is disgusting the way women are being treated every day because of a product call bladder sling mesh.  Where is the justice?  Sadly there seems to be none.  Women are being mutilated in this country every day by doctors who do not know how to remove the mesh, but try anyway.  Then they leave the woman to suffer the consequences of their callous actions.  They could learn, but they don’t.  Manufacturers could stop making it but they don’t.  I often want to scream at the world, but what good would it do.  No one cares.

I hope today I can help women who have lost their jobs, their insurance, their families and their income.  When you are at wits end all you have left is to try to get on government disability.  However, that statement if far easier said than done.  So today a lovely lady explained to me how it works and how she fought hard to get on it so that she could get medical help.  This is what I learned.

First of course you have to file to get on it.  Spend time getting together every record you can find to let them know what has happened to you.  Hospital, doctors, research here and other sites that states that bladder sling mesh causes ultimate pain, loss of work and family.  Once you have done this, the disability office will send you to their doctor who will almost more than likely turn you down flat.  You will be crushed.  You will have more pain, anguish and sadness added to the insult of mesh.  Take a deep breath.  Cry that day only and then get a lawyer to fight for you.  You are already fighting the mesh system in your body and you cannot fight it all.  You need help.

How does it work you ask?  I had no idea because I have lived in mesh hell over two years and was waiting for my 65th birthday to go on Medicare to get help at last!  That day will be 1st of June this year.  However, you are much younger and cannot wait to get help at 65.  The disability lawyer will take your case and information.  Don’t expect any lawyer to do the work for you.  You may think it is their job but they do not understand mesh complications.  If you want to win, you prepare your case in advance.  He/she does not know your body.  Does not know what mesh has done to you.  He/she cannot feel your pain.  Do the work to get him/her on board with your hell.  He/she sill be educated so that this does not happen to someone they love.

Once you are on board with a lawyer there will be months and perhaps two years of waiting.  So now you are thinking “I can’t wait that long”.  You are not looking at the big picture.  You don’t have a choice but to get up and fight.  You cannot sit back and wait for a knight in shining armor to appear in your life.  There isn’t one so get over it.

Try to fast track your case by writing one letter that you can copy and paste to every congress person in your State.  Make daily phone calls and try to get your plight heard.  It does work!  I know this from women who refused to lay down and die.  Refused to be ignored.  A congress person can be of enormous importance in helping you, but not if you let anger rule your head.  On emotional days leave it alone.  Pick the best time of day when you feel strongest.  Then fight!

Who pays the lawyer?  Not you and yet, yes you.  From the time you file, any back payments will one day be paid to you when you win your case.  The lawyer will be sent a check out of those back payments.  If your attitude is that he/she doesn’t deserve your money then all I can tell you is this.  Crawl in a hole and die.  You couldn’t do this alone and yet you feel he/she should not be paid.  Wrong attitude.  You need help.  Do whatever you can to get the help you need and stop complaining to the world.  You are far stronger than you think you are.

Yes the pain is hell.  I get it.  Remember I too live this way.  What keeps me going is this.  I help others.  Now ask yourself what are you doing to help yourself and someone else.  Stop making excuses.  Take control.  This is your life we are talking about.  I hope you have a good future which is why I am spelling it out here in no nonsense fact.  Read and take action.  I was always told, “actions speaks more than words.”  Believe me it does.

15 Comments

  1. DIANNE

    Linda,
    This article is right down to the last and final note on Social Security Disability. They also have what the call SSI almost like SSD but, you can’t own any assets over $ 2,000.00, which includes bank accounts, life insurance a car or house in the state of Florida. I just found that out and also they put you on medicaid and if you are over 62 they give you medicare and medicaid.

    Thanks,

    Dianne in Florida

    Reply
  2. Anita Lee

    Linda , I have no drs that will say the mesh is my problem i know they think its all in my head or that im out to get pain pills which is not the case.. I go to the free clinic for my care and she just looks at me as if im making up my pain or putting it off as artritis.. So not sure what to do in that case social security is sending me to the dr on the 7th for a physical.. So not real sure what i need..My dr isnt backing me up but my pain is very real.. I have been very sick this week. so not sure what i need to do to get someone to beleive me..Thank you for your site it does help me knowing im not In this alone..Anita From Tennessee

    Reply
    1. Brittney

      Anita, my mother has gone through the same sotuation. She has delt with the pain for the last 7 years. Every doctor she seen said everything was fine. She finally seen a specialist at Vanderbilt in Nashville. On Wednesday she goes for the doctor to attept the removal of the mesh.

      Reply
      1. lavalinda

        Attempted removal of mesh is what causes all the nerve damage. Please get her to Dr Raz at UCLA

        Reply
  3. lavalinda

    Anita, these doctors never will because that would be admitting that the millions of mesh slings put in women COULD be at fault. If they ignore it, they don’t have to do anything about it. There is also another factor. Most are not educated in this and believe that the lawyers ads mean women are lying to get money. Many women have told me that doctors have outright told them this which is terrible. You could not make this up. The other side of this is that all standard tests show nothing and therefore the conclusion is still that it is in your head. These slings are still put in our bodies every day without telling women that they are not made for removal and in fact removal is darn near impossible. If you have a problem you are screwed! There is no disclosure by the manufacturers that ensure doctors make their patients aware of this fact. If there were, I doubt if any woman would have it done. If you have a knee implant, you can have it replaced if there is a problem. Not so with mesh. In fact it is designed to become part of your tissue and organs from day one and seperating the two is damgerous and very complicated.
    So I am sad to say we have to join together and fight harder to get manufacturers disclose these facts. Then we have to work darn hard to find a doctor who will at least believe you. I will email you again.

    Reply
    1. Helen

      The urologist, who operated on me, performed panels of diagnostic tests since surgery, not once did he instruct me to stop medication prior to tests.

      The urogynecologist I see performed tests, but I forgot to stop medication five days prior to test. I have so much pain and problems with mobility. My bladder shift – which causes all sorts of problems, and he cannot remove the mesh. He even admitted bladder mesh give you pain.

      I scheduled an appointment with another urogynecologist in Tennessee; he wanted me to stop medication two weeks prior to seeing him. He will perform same panel of test, so I am canceling that appointment. I don

      Reply
  4. Sherry

    Hi, I am 40 years old and has my first surgery in 2008 and started having problems and had another surgery in July 2011 for another bladder sling replacement and removal of mesh. It saddens me to say the the physician was only able to remove a small amount of the mesh and stated that he advises me not to have another surgery to try and remove the mesh because it was dangerous and I could end up on a colostomy bag. I was recently married in 2010 and it really has slowed things down a lot in my marriage. I cannot stand, sit or lay down for a long period of time and I constantly have pain in my legs whether I am lying down or standing. My doctor that performed the last surgery referred me to a pain specialist and he seem to think it is in my head and put me on ant-depressant pills of which I stopped taking. I know what women who have had this procedure is going through and my prayers is with each of you.

    Reply
    1. lavalinda

      The obvious answer is that this doctor did not have the expertise to do this surgery in the first place. More and more doctors say they can remove it when in fact they cannot. There is a reason. The mesh that was placed in our bodies was not designed for removal and this is so stated by mesh manufacturers and surgeons alike. There are just a few in this world who can do removal without you winding up on a colostomy bag. Yes it is dangerous, but it is far more dangerous to keep having partial removals by doctors who should tell you first that they cannot do it. I will send you an email to follow up.

      Reply
  5. J. Kroetch

    Has anyone had pain in the balls of their feet when walking. Has it triggered a feeliing of needing to urinate? Just wondering. Some complain of leg pain after the mesh, but my friend is complaining of pain in ball of foot when walking a certain way, and the urgent need to urinate. Could this mesh affect nerve endings in the foot, that may lead to feeling of need to urinate? Just wondering.

    Reply
    1. lavalinda

      I don’t know if anyone else will see this and know about the feet. My problems are all down my right side, leg, groin, hip, pelvic, back. She should go and see someone who has experience in mesh comnplications. Most doctors do not understand these complications. I posted a recent blog about seeing the surgeon I have chosen to remove my mesh dated May 7th 2012. Get her to read it.

      Reply
  6. mariam

    Hi linda
    I would like to e.mail you privately as i have all the the complications and symptoms of mesh,but have no prove.I had a rectocele repair in 2007.i live in cape town south africa and am suffering. i need to make an appointment with either docter raz or dr veronikis i have e.mailed docter veronikis but so far has had no reply.if you can assist in any way you can e.mail me back on above adress.Also my big question is how much would mesh removal surgery cost and if any of these docters would be able to detect the mesh in my body without me having the operative report.Thank you for all the info on mesh without you and the other ladies i would have never tied mesh to all my complications and symptoms

    Mariam

    Reply
    1. lavalinda

      Mariam I am so glad we have spoken on the phone and yes they will be able to find any mesh by using the translabial ultrasound.

      Reply
  7. Nicole L.

    Hello ,
    I had a mesh put in for SUI in 2012. August 2014 I began to have severe left groin pain, vaginal pain, pain during sex , and leg pain. Original surgeon said I looked great inside and didn’t know what was going on. Every time I lifted something , vacuumed my house anytime I would bleed. Saw a Uro-gyno she said mesh shrunk inside and it needed to be released. March 2015 the Uro-gyno removed mesh . Since then , I have bleed lifting , severe groin pain to where can’t sit or walk for a period of time. Sexual intercourse is definitely out . And now my left leg is swelling and both feet go numb and upper thighs are numb. I’ve been doing physical therapy but this past weekend they put it on hold because no matter what they are doing in getting worse not better. I’m in bed for the next few days with so much pain. I am a cna at a local hospital . Havnt been able to work in months.
    I don’t know what to do anymore ???? Anyone have any suggestions ?
    Thank you !

    Reply
    1. lavalinda

      d revision done and that means removing a small piece in the center. It happened to me too and I got worse. This is why I went out to UCLA and Dr. Raz removed it all. The swelling and numbing is all due to mesh nerve injury and you need to go and get it all removed. Few doctors know how and many lie about what they do.

      Reply
    2. lavalinda

      Nicole the numbing is due to the mesh on your nerves and you need to get it all out by a competent doctor. You only had revision surgery which is where they removed a small piece in the center. That is what most doctors do and this is why I went out to Dr. Raz at UCLA and he removed it all including the anchors. I felt so much relief.

      Reply

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