Two Year Mesh Hell Anniversary

I don’t think anyone suffering from bladder sling mesh, forgets the date it was put inside them.  Mine was March 9th 2010.  It isn’t a good anniversary, such as the day your child was born, or the day you married the love of your life.  It is a remembrance anniversary that you hope and pray you will one day get past.  A day that will fade away after the mesh has been removed from your body and a light is at the end of a long tunnel of darkness.  This is why writing about my two year anniversary is very important to me.  I hope that this will be the last one of pain and sadness.  Next year I hope to celebrate the beginning of a new life, pain free.

I don’t expect instant miracles any more.  This is because my two year education on mesh and removal has taught me that it is not an easy journey to remove.  I know that surgery to remove it means there will be more pain.  More days, weeks and months of recuperation in many stages.  This won’t be easy for me because I like to be productive.  I like to work and feel I am doing something good while in this world.  I have also learned that one surgery won’t be enough.  There also has to be reconstruction to put ‘everything’ back in it’s place again once it has been disturbed by mesh injury and removal.  Straighten things out that have kinks and curves where they shouldn’t be.  This is to ensure that my future won’t be filled with agonizing infections and kidney disease.  Or at least I hope it won’t.

Yes I am scared of this surgery.  It’s dangerous.  Mesh grows into your organs and other functioning parts of your body.  Removing it is slow and can be deadly if you hemorrhage.  That’s why it is SO important to choose the right doctor.  Even if it means selling things to get there.  Yes, you do what you have to to get the money together for travel and expenses, even if it means hardship for now.  Lets face it.  If you are in the same position I am in, then you already know about hardship.  You know getting out of bed and doing small things is hardship.  You know that living in pain all day, every day is hardship itself.  You owe yourself a break.

I’ve had to wait two years to go on Medicare when I turn sixty-five in June.  Two years battling daily pain and difficulty in walking.  Now there is a light at the end of the tunnel but it is shrouded in shadows of darkness.  How to get the money for travelling to the best surgeon in the world, was a big question.  The answer.  A car I couldn’t drive any more, sitting in my driveway.  Twelve years old but kept up in maintenance brought me $2.800.00.  Not a lot of money for two tickets to fly across the country, several times, but it is a start.  You can’t do this alone.  Someone has to go with you.  Hotels, dog kennel fees to keep my small companion safe while I am gone from home and at the start of my recovery.  Other expenses that I wouldn’t occur in my normal daily life, living in my own home. 

$2800.00 won’t be enough of course, so I get up and make my hats, working as I can.  It doesn’t bring in a lot of money but it is self fulfilling.  I’m doing something towards my future.  I’m making a bit of money here and there is better than sitting her crying over spilt milk.  I have to do SOMETHING to change what has happened to me.  I don’t have a choice.

Removal surgery is not an option.  Leaving it in means more slow deterioration.  A long slow death of kidneys being attacked by not passing urine the way I should.  Pain that runs rampant down my right side from my waist down.  It shifts, it attacks and it has it’s own fury.  Pain that never ends, it only abates enough for me to catch my breath.

If you are reading this and feel this way too, then you know you don’t have a choice either.  If you never feel well any more since it has been placed in your body and you can’t put a finger on it, but you know in your heart it is the mesh, then do something.  Systemic immune disorders are one of the most common complaints I hear from other women who contact me.  “Have you heard of this?” they ask.  “My doctor says it’s all in my head”, they complain to me, “but I know it isn’t”.  If you are one of those women, then I say to you, believe in yourself.  Take action.  Common tests won’t help see any complications.  Read these two blogs to help you on your way to a ‘new’ life.

http://meshangels.com/2012/02/mesh-complication-education This blog will explain what tests need to be performed to detect mesh complications.  However, you will have to stand up for yourself to get this done.  You have to tell your doctor what you want done, or move on to find a doctor who believes what you are telling him or her.  The only person you can now trust is YOU.

http://meshangels.com/2012/02/questions-to-ask-before-mesh-removal When you know it is time to take the plunge and ask for removal surgery, then print these questions out and take them with you.  I didn’t write them.  I asked a lovely friend to write them for me because she has had both removal and reconstruction.

You can do this.  Your life is at stake and you deserve to be whole again.  You are not alone.  A small group of us are here to help, as much or as little as you want.  All you have to do is ask.  I will send you a list of doctors, support groups and how to report your case to the FDA.  Leave a comment or if that makes you uncomfortable, send me an email in private.  Remember.  Comments will not show your name.  What they do is allow other women to read them and know they are not alone.  We are in this boat together.

So instead of losing myself in anger at what has happened to me on this anniversary, I choose to share it with you.  I choose to help you find your way back to better health.  You have friends who understand you.  All you need to do is ask.

8 Comments

  1. Handyman

    …….And you wonder why we call you a Hero!

    Reply
    1. lavalinda

      There are many heros out there who are trying to change things for the future of our daughters and grandchildren. You are one of them.

      Reply
  2. Kathleen

    You have guts of steel! You will beat this and even though none of us will be “perfect” again, we will be so much better that the alternative. To know the road ahead and be willing to take it so you can be well. You will be I know that. I was so blessed to be in the right place at the right time to get help and now it is your turn. Counting down the days until you get to hear the Angels sing! LOL! You have done all it takes to go to a Doctor that can truly help you. That is the key to it all.

    Reply
  3. lavalinda

    Thank you Kathleen. To understand Kathleen’s “To hear the angels sing”, is not a comment where we expect to die. It is how all women feel when they go to a great doctor.

    Reply
  4. Diane

    I walk along side you on this journey of pain and anger trying to find our way back to healthy happy carefree days…I know the light is there…its just not always visible on those dark days but knowing we have friends to hold us up is our key to success!!! We WILL do this and be healthy and whole once again!!! HUGS!!!

    Reply
    1. lavalinda

      Thank you and I know that you know exactly what this journey is because you are also on the same road. Between us we will get the word out and save others this agony.

      Reply
  5. jane a

    I am looking forward to your post surgery celebration party!

    Reply
    1. lavalinda

      Me too. I am not sure what it will be, but I would like to go on the Ellen show. Is that nuts?

      Reply

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