Bladder Sling Surgery

I have known for awhile that the stories I listen to day in and day out about women who have been injured by mesh, have haunted me.  Terrible stories of lives cut short of women of all ages.  I have been contacted by women who have huge complications from mesh, from ages 21 years to 90 years.  I have spent over two years learning and gathering information to help myself and other women to get through these complications.  But the stories never stop and I am losing hope.

When I faced that reality this morning I knew I had to stop.  I tried to change things by cutting it down.  I tried to speak less hours on the phone to these women, but none of it has worked.  It has taken over my life and over my mind.  I hate the word MESH!  I hate hearing it, seeing it and reading it.  And yet mesh is still in my body hurting me every day.

I knew this morning I had to make a full stop change so that over the next few months I can change the four letter word ‘mesh’ in my head into another four letter word.  Hope!  This can’t be done while I listen to more terrible and terrifying stories of mesh injuries.  The change has to come from me.

I tell women all the time that there comes a time in your life when you have to put yourself first.  Not your partner, your children and not your grandchildren.  You!  As I have spoken these words over the phone, the words come right back at me.  I have to do the same.  This means taking a break from all that is hurting me in both my mind and my body.  I have to change my thinking to prepare for my own upcoming removal surgery.  I can’t do this if I do not have hope.

There is still others out there who are trying to change things and are helping women through this terrible tragedy.  I am going to put this information here so that you can contact them yourself.  But it does not matter how much information you receive, phone calls by others to help you, you are the only one who can help yourself.  You have to find a way to travel to a surgeon who can remove the mesh successfully. If this means you cutting off the help line to others while you find your own version of hope, then do it.  People will only love you, if you love yourself first.  If they don’t then this means they never loved you anyway.  Sad I know.  But I have faced this before and got through it.  You can too.

The following is the name and information of a doctor that women who are in this predicament feel is the best surgeon in the world.  There are others I am sure, but this is the surgeon I have chosen to give me hope. There is also a link to a couple who are working on setting up a nonprofit organization to help women in the future.  All this takes time, so please do not expect miracles.

First, I have written many blogs to help you.  The information was gathered from other women who are going through what you are going through and from my own efforts to try to stay well enough until I could get help.  Take from them what you wish and do what you like.  This is your life we are talking about, not mine.

If you do not know what to ask of any doctor/surgeon before you have mesh removal, these are questions that could help you.  http://teapapers.com/bladdersling/2012/02/questions-to-ask-before-mesh-removal/  Print these out and take them to ask your doctor what you need to know about your complications and his skills.

This blog is about a test that can detect where your mesh is.  Dr Raz of UCLA designed how to read this test to help find what is happening to women before surgery.  He will answer any questions from your doctor and help them use it.  http://teapapers.com/bladdersling/2012/02/mesh-complication-education/

If you are having serious yeast infections because you are taking antibiotics due to constant infections, I wrote this blog  http://teapapers.com/bladdersling/2012/05/bladder-slings-uti-infections/

If you decide to go to a doctor who your insurance will not pay for, learn more what to do here.  http://teapapers.com/bladdersling/2012/03/mesh-your-insurance/ 

Please tell women to read this BEFORE they have a hysterectomy.  I wrote this blog for the Hers Foundation because they did not know what was happening to women.  http://teapapers.com/bladdersling/2012/04/221/

A couple who knows what mesh can do to women have started a new organization http://www.tvtno.org   You can email them here.  info@tvtno.org

By writing this blog over more than eighteen months, other women have helped me with what happened to them and how they coped.  While they shared, I learned.  I will be forever grateful. The one thing I learned is that there is a really good surgeon in this country and I will be travelling from Texas to California on June 4th and have my first consulting appointment with him on June 5th.  This is his information.  Please understand that this man is swamped with mesh removal surgeries.  When you call the new patient number, be nice and be patient.

Dr. Shlomo Raz  ………………………new patient hotline  310-794-7700.  UCLA Medical Center Urology.  200 Ucla Medical Plaza Suite 140 Los Angeles, CA, 90095  

So now I will switch my mind for awhile to find my own hope.  I hope you will find yours.  I plan to share that hope with you some day when my mind is ready.

This morning one email came in

“Hello as I write this I am praying and crying. Please let this email go to someone who understands what I am going through! God please! Just this past Thursday May 10th I had surgery for mesh removal. WHY am I still in PAIN? I don’t understand? This is NOT pain from the surgery! This is the very same pain! Lord what have I done? I thought he said he got it all. If you get this email and I pray someone does please let me know I am not alone. Blessings”

I did not include her name here but it was from yet another woman who was reaching out in pain and sadness in the hope that someone will hear her.  I did and I will try to help by listening.  What can really be done for her is much harder.  Having just had surgery, she cannot undergo yet another for six months, unless it is an emergency to allow her body to adjust and heal.  Six more agonizing hell from mesh that is more than likely still in her body.

Her words to me are more common than you can imagine.  I have talked to so many women who underwent mesh removal, only to come out of surgery in the same or far more pain than they had before doing it.  This says a lot because most are in such terrible pain and are desperate. 

I try hard and do my best to help and yet I know there are thousands of women like this. Thousands who live in pain and thought mesh removal was their only hope.  The sad part is, most doctors do not have even a slight clue how to remove mesh from women’s organs that as manufacturers state “It is not designed to be removed”.  As I reach out to others, it also takes a toll on me.  Most women in their own pain do not understand I too suffer.  And I sadly do not have all the answers.  But I answer these women, giving them as much hope as possible.  Telling them of one and only one doctor in this world who I believe can help women.  He isn’t a God.  He is a man who all this mesh hell removal has fallen upon.  Are there others?  Maybe, but it takes a year for any woman to know of her results.  Most of us will never regain complete recovery.  You cannot rip out mesh that has grown into organs and tissue and think there will be no damage.  Nerves and muscles will be injured and yet women go through mesh removal because without it they live in agonizing misery.

I wonder on this Mother’s Day how this doctor handles his time off?  How does he view all the daily suffering?  This is a never ending pit of hell that has befallen women and yet there really are no answers. 

All I can tell any woman on this Mother’s Day is that for the first time in your life you have to put yourself first.  Regardless of cost.  Regardless of the cries in the background that are yelling “Me first”.  You have to push all those voices aside and do what is right for you for a change.  You have to research before you believe any doctors words “I can remove it”.  You have to understand that most cannot. 
The tools are here.  A list of questions you can ask over the phone.  If your doctor will not speak to you about them, or does not answer these questions, run.  Find one who is not afraid to answer you.

Happy Mother’s Day is something you say to normal women.  For those suffering the results of mesh complications, there is no Happy Mother’s Day.  They just get through it the best they can with a smile to help those they love think they are okay.  They are not!

I sit here this morning my mind in a turmoil as I ask myself this question.  “What can I do to help this woman?”  The answer is “I don’t know”.  And yet, I cannot sit here and do nothing at all.  I reminded myself ‘there but for the Grace of God go I’, and yet these women are not in this position because of any God.  They are suffering because of humans.  Because of a medical profession that does not care enough to change what is happening to women around the world.  Because of money!

Last night I spent two hours on the phone with a woman in England.  A woman whose journey into hell began in 2004 with a mesh bladder sling.  A woman who is now sixty-two and wants to end her life.  She told me she has always been a fighter, but now she has nowhere to turn.  She just wants to go to sleep and never wake up again.

Sounds so simple I know and yet this woman after attending an exit of life seminar realized that the sleeping pills she has been hoarding will not do the job.  That a fast easy way out isn’t that simple.  She has prayed to have cancer to end her life and yet it doesn’t happen.   This is a statement I have heard before.  “Please give me cancer”. I was not shocked when she said this.  You see there are many women who feel this way and have stated the exact things this woman said to me last night.  “I just want to die”.  This is because their pain is so extreme.

You may think they are exaggerating.  No they are not!  These women were in good health, normal women whose bodies have been mutilated by partial sling removals that not only did not fix the problem, but made it worse.  They have gone through every penny they had trying to find a way out of the never ending pain and horror of what was done to them by placing a bladder sling into their bodies. 

This woman was no different.  Without help from her own country’s National Health System to remove something they approved being put into thousands, no hundreds of thousands of women, she sought help overseas.  Drawn in by a website filled with promises of mesh removal and for her the beginning of a new life, she flew to this country, my chosen country and spent $27.000.00 only to become worse.  Complete incontinence and a life of agony.  To lose her life further into homebound abandonment.  What then you may wonder can she do?  In desperation, more money to private mesh removal in the U.K. without an end to her pain.  Where does she go now?  To an exit of life seminar to try to find out how to kill herself.

As I let this woman talk, and she did releasing all the pain and anger she felt at doctors who do not care about her and others and every day, they keep putting slings in women.  At mesh manufacturers who produce a product that is placed inside a woman’s body that they and doctors state “Is not meant to be removed”, regardless that there could be complications.  I tried in my mind how to help this woman.  The truth is there is only one man in the world who could help her and yet at this point I don’t know if even he could undo the damage that has been done to her.  Even if he could she would have to fly across the world to get to him.  Spend many thousands of dollars that she no longer has.  A woman who cannot sit and yet would have to travel sitting up in an airplane for many hours.  Even I know that this is probably impossible and yet I am still trying to figure out how to help her.

Am I stupid?  I have struggled every day for the past two years and two months to get help for myself.  However, my help is finally on the horizon.  Next month I will go to this wonderful man for my first consultation that will then allow me to have removal surgery. And yet I feel guilty because I cannot help this woman and thousands of others.

Where are the angels in this world? Why are women being abandoned like this?  I don’t have the answers and don’t know anyone who does.  I feel helpless!

It really makes me sad to hear so many women who are suffering from continuous bladder infections from bladder slings and using antibiotics to TRY to stop them.  If you understand anything at all about any drug, you must also understand that over a period of time they either stop working altogether, or you will be given many types of the same thing without good result.  You will become frustrated and will feel constantly unwell.  Infections make you feel irritable, out of sorts, headachy and upset.  What the real problem is, it is the sling that is causing these complications.

Sling removal is complicated and not easy and takes time to get an appointment with a good surgeon, in fact if a doctor is questioned about removal a good one will tell you outright that slings are not meant to be removed.  Your immediate thoughts are “Why do they put them in if this is the case?”  Believe me it continues to cross all our mind but this blog is about self help.

My sling has been in well over two years and from day one, I had non stop UTI infections.  Antibiotics did not touch them and I felt ill all the time.  My daughter hates to see me living unwell so she began to research.  I can tell you this much.  Once I began taking this supplement, within a month I did not have an infection and my tests were clear.  I have lived on this this supplement without complications or side affects, only stopping it once a few months ago and within a month I felt the symptoms reappear.  So I went back to it immediately and have been fine ever since.  I am unable to deal with the pain and complications of my sling without removal, but at least clearing infections helped me somewhat.

I recently talked to a pediatrician neighbor who was shocked I had cleared my infections and she wrote down the name to help her small patients.  There is no magic wand and you have to try this and stick to it to clear the infection to know if it is right for you.  If you are taking other medications, you should check into reactions.  Leave no stone unturned.  This is something that helped me but I cannot guarantee it will help you. 

First though, constant use of antibiotics will cause you yeast infections.  This too will make you feel very unwell. This happens because drugs have killed off all the good bacteria that keeps you feeling well and you need to put them back.  To counteract and clear your system you need a really good probiotic.  Not yogurt.  Not a drink with a probiotic in it, but a good probiotic capsule taken daily, and a full time regiment of self help.  You may think it is expensive, but if you were to put the cost of drinks together which are not enough for someone who has a problem, is isn’t costly at all.  You are worth it and you need to get better to do the other things you need to do.

To understand types of probiotics, please go to this link, read and learn and then make a decision of what to buy.  http://www.webmd.com/digestive-disorders/tc/probiotics-topic-overview

Everyone has to think for themselves and often that means taking a plunge and trying something.  My exasperation and decline in health from constant UTI’s left me with the attitude “I will give anything a try”  You have to decide what you want to do.  The inexpensive herb I take every day in capsule form is by Nature’s Way.  It cost no more than $5 for a month’s supply.  You don’t need a mixed product with a costly name and a line of promotion attached to it.  The herb is called Marshmallow Root.  Read up on it and decide for yourself.  Here is a link to help you.

http://www.herbs2000.com/herbs/herbs_marshmallow.htm

I truly believed this product has kept me going all this time and I have not had the immune problems many women have.  I hope it helps you.

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.

It is almost three in the morning.  I woke up suddenly, thinking I heard something.  I hobbled through to the kitchen, every step reminding me of the mesh in my body, but the house was quiet.  I put a cup of milk to heat in the microwave.  While it warmed I began thinking about the woman who sent me an email before I went to bed.  Another lost soul living in pain, unable to work and fighting our system.  Trying to get disability and medical care is not made easy for women with mesh in their bodies.  They fight pain daily and have to fight harder to get medical care, often without good result.
I checked my email to see if she had answered my question of which State she was in.  Nothing.  There was a story from a thirty-two year old woman who also has mesh in her body after a hysterectomy and can no longer care for herself or two children.  Another life on hold and broken.  Another family in serious trouble.  I then checked to see how a friend had done today with his fundraiser.  A fundraiser designed to help him and his wife try to save their lives and those of others.  Mesh is responsible.  Their house always close to foreclosure.  He is always struggling to make enough money to take his wife on a long road trip to the doctor.  Another two lives on the edge.  Another family broken on the brink of collapse.  I read his sad, broken words that the fundraiser was a wash.  Maybe it was because it was the Easter weekend.  Maybe it is the economy.  Who knows.  He felt beaten down.  He said they were worse off than before.  His words linger in my mind.  Mesh is responsible.

Today is Easter Sunday.  A holiday of joyful religious spirit for many.  A holiday for children to hunt and find eggs.  A Spring holiday with the promise of summer and carefree fun.  Not for everyone.  For those who have mesh in their body and the families who support them, there isn’t a lot to celebrate.  Each day is a struggle.  Financially, emotionally and physically.  It takes a toll on all who are exposed to the perils of mesh. 

I hope this friend will bounce back tomorrow and not feel a failure.  I know he feels beaten and a failure as a man.  A man who wants to help his wife get well.  His spirit broken.

For all those who enjoy this spiritual holiday, there are many who can’t enjoy anything.  The endless pain racking their body and destroying the life they once knew.  Their family watching on the side lines unable to take away the pain.  Mesh is responsible.

When will the world take notice?

I dedicate this blog to all the young women who can no longer care for their children because of bladder sling mesh.  For all the women who have lost their careers because they can no longer work, because of mesh.  For all the women who should be enjoying their retirement years and their grandchildren but cannot because of mesh.  For all the elderly women who are living a life of pain that no one understands and there is no chance of a surgery to remove it, all because of mesh.

Please understand I am not a doctor nor am I giving you medical advice.  All I want is that you are educated BEFORE you have a sling implanted in your body.

For this blog I want to write for women who have NOT had sling implants but are considering a hysterectomy.  I am writing because you are in the danger zone  for bladder sling mesh and it’s complications.  This is because most doctors who do this surgery will automatically place a sling implant in your body at the same time that they remove your female organs.  This is because when they do the latter, your bladder stands a good chance of dropping where your organs once were.  This is why you MUST understand what a hysterectomy is and if it is needed before you commit to it.
If you fall into this category, then before you choose to do this, go to this site.  http://www.hersfoundation.com/contact.html  Or you can call them for information, this is their contact details
HERS Foundation
422 Bryn Mawr Avenue
Bala Cynwyd, PA 19004
Phone: ( 610 ) 667-7757

Toll Free: ( 888 ) 750-HERS or ( 888 ) 750-4377
Email: hersfdn@earthlink.net

What is a bladder sling you ask?  It is a mesh product made from synthetic polypropylene mesh which basically is a soft plastic mesh fabric which once placed in your body will almost immediately begin attaching itself to your bladder.  I did not understand this myself until  after my surgery.  Once the sling is inside you, it will attach itself to the bladder and anything close by.  It cannot be removed in a simple operation.  It takes huge skill and without that skill you will have many partial mesh removal surgeries.  I know for a fact that one woman has had seventeen surgeries.  Yes, 17!

Click on this link to view a photo of one type of mesh made by Boston Scientific.  new bladder sling It looks soft and harmless and would seemingly hold the bladder in a comfortable position.  What you must understand that it has to be attached to your pelvis.  To do this there are two arms/anchors to hold it in place.

For some women the complications begin immediately  For others it takes five to seven years before the complications occur.  However for some it happens even later.  Just because you have had a calm period does not mean you are out of the woods.  Often the pain begins slowly and numerous normal tests will not reveal any signs of problems.  The bad part of this is that women are then perceived as having this ‘all in their heads’.  In this country, women are either turned away and left to suffer or given anti depressants and/or pain killers, many of which are addictive.  In Canada I have been told that women are given one or more mental evaluations to see if they are making it all up and they have to fight to be believed.  This is just another assault on women’s rights.

This is a photo of a piece of mesh 3 months after removal.  It no longer looks soft and comfortable.

Symptoms of mesh complications.  Women have reported to me over time that their sling has caused severe headaches, lupus and other immune disorders and of course endless agonizing pain in their groin, thigh, hip, pelvic area, back, legs and even neck and shoulder pain.  This is because over time the mesh will shrink and harden and cause tremendous complications.  Women have told me that childbirth or cancer was never as bad as the pain they had with mesh complications.

I hope this blog has brought you some reality.  If you find this blog before you have any surgery, you can now make an INFORMED choice.

I care what happens to you and all women.

There are days when I ask myself why do I do this?  Why do I put myself in the middle of all the grief and pain that mesh has and is causing women everywhere?  Then a phone call comes in like the one last night and I know why.  Someone has to.

Early afternoon I received a short email from a woman who gave me her phone number, told me her name and said she no longer knew how to help herself.  It was a plea so frank I picked up the phone and called her immediately.  She didn’t answer because she was so sick.  She managed to call me at ten last night and I knew by her voice she was very, very sick.  She told me she had surgery ten days ago for partial removal and was sent home with a few antibiotics which she had run out of and basically left to die.  Her body racked with chills, pain and she was throwing up.  I knew this meant she had deep tissue infection, something I have learned from other women suffering from long term mesh implants in their bodies.

The clinic where she had the surgery gave her no recourse.  No diagnosis.  She was left to her own very ill devises to try to save herself.  She told me she had been a businesswoman all her life.  That she was a pastor.  She wanted me to know she was educated.  Why?  Because women blame themselves for getting themselves in this position.  I yell loudly “This is not your fault”.  This is happening to women all around the world who never knew that there was a mesh implant inside them.  They were never told risks or complications.  Education has nothing to do with mesh.  It has everything to do with no disclosure.

She told me the State she was in.  I didn’t know of a good removal surgeon in her area but remember the one in New York.  I don’t have any feedback but I knew I had to do something to help her.  It was the only hat trick I had left so I asked could she get there?  She said yes she could get someone to take her and she would call them.

I couldn’t sleep of course, so I sent my special helpers an email so that they could send her their thoughts, love and support to her this morning.  These wonderful women got on the ball. 

Can we save this woman?  I wish I knew.  All I know is we are doing our best.  We care so much about other women and yet no one hears us.

This has to stop!

Why do I write these blogs?  It helps me help other women who live like I do, in constant pain every day from the mesh in their bodies.  It helps me get the information to others that I have learned through my network of women friends who have mesh like I do.  Even if you do not trust who is writing this and will not contact me, you can learn from what I write here and help yourself move on to a better life.

There are so many women trying to fight through a maze of red tape with their insurance company to try to see a good mesh removal specialist and all they do is hit walls.  I am fortunate to have many mesh women friends and when I put out the question “What should they do now?” They answered.  Thank God for these women.  This happened very recently and I decided it is time to write about it.

First of all you must listen to the warnings going on in your head when you go back to the doctor who put the mesh in you.  Does he believe mesh injures?  Is he still putting it in others when he is offering to remove yours?  Does he have the experience to remove it ALL?  Does he have the right equipment to see what is going on inside your body?  I have written two blogs to help you with this and I will add the links at this end of this blog.  However, unless your doctor believes that mesh injures women, he may interpret any tests results as nothing to do with mesh at all and decide to put you on antidepressant drugs or pain management.  If this happens to you, walk again and contact me for doctors who will help you.

What if you cannot work and no longer have insurance.  Your only hope is to get onto disability.  Not easy I know, but one stubborn young woman recently told me that she called and kept calling her State Congresswoman until the woman fast tracked her disability so that she could get on State medical insurance.  If you cannot work, you HAVE to do something.  I know how hard it is to get up each day in pain and start the fight to get help all over again.  I know that others in your family may think you are putting it on.  That your partner may not understand how bad this is for ALL women with mesh in their bodies.  I know there are days you want to quit and give up.  I know all this because I talk to countless women who feel exactly like you do.  They want to give up and die!  However, their children keep them going to try to find help and answers.

So now you have State insurance at last and have chosen to go to a mesh removal specialist and the insurance says “No!”  You cannot give up.  I recently asked other women what you can do and they said call your State Insurance Board and ask to give you a case worker who is a patient advocate.  Insist you need someone to help you or you will DIE!  That is not an exaggeration.  It is the truth.  A patient advocate will do the negotiating for you and get you the right to see a mesh removal specialist.  You are dealing with enough.  If you don’t have your mesh removed you are risking a slow drawn out death of kidney disease or serious immune disorders such as lupus.  You HAVE to get help.  You CANNOT sit back and die.

On bad days when the whole world feels as if it is against you, don’t get on the phone.  Wait until a day when you think you can handle the stress.  Yes stress!  It is bad enough that we were never given the whole details about the product that is invading every part of our mind and body.  That we never were told that mesh is easy to put in and so difficult to remove.  And still we have to fight hard to get help.

If you don’t have the money to travel to a removal specialist, do anything to make it happen.  Sell what you can live without.  Get a church to sponsor a fund raiser.  Get your job to sponsor one.  Don’t give up.

You have to raise your children.  You need to live to see your grandchildren.  For the first time in your life put yourself first.  I did everything to help myself.  I sold my car and work from home to get a little income to put towards my travel expenses.  I REFUSE to sit back and give up and so should you.

Contact me for support and guidance.  Read these two blogs and learn, learn, learn.  Trust in you and only you.  Listen to no one else.  Don’t let any family member try to insist you go to a local doctor.  Do this for YOU!

http://teapapers.com/bladdersling/2012/02/questions-to-ask-before-mesh-removal/

http://teapapers.com/bladdersling/2012/02/mesh-complication-education/

To Choose!

Before you read this blog, it is not written to bash the FDA or other organization.  It is about our fundamental right to choose what is put in our body after we have been given all the facts and information.

It’s three in the morning.  Another night I cannot sleep, because of pain inflicted by an implant product known as mesh and I wonder how many women around the world are laying awake, wondering what to do about their pain.  How they are going to continue with their careers and feed themselves and their families.  How they are going to keep their partners when sex is no longer an option.  How they will raise and take care of their children.  I think about all the women who contact be begging for help because they have run out of options and no one is hearing their pleas. 

What happened to our right to choose what is placed in our bodies?  To be given literature and a full explanation of what mesh is and the fact that is in an implant?

We have a government with many departments to protect us and keep us safe.  Why isn’t this one working for us?  Where is our protection from mesh manufacturers who view only the bottom line.  Money! 

Yes we have an organization known as the FDA.  But who was the watchdog in this department who fell asleep and allowed products to pass through and destroy our lives.  Who now will stand up to the big guys and say that they cannot produce these products and put them in us with no accountability.  Things have to change and we women have to yell loud enough to make the changes happen. 

Each of us may or may not live a full and productive life because of these products.  Why?  Because it is easy to put it in and almost impossible to remove it.  Only a hand full of surgeons in this country and the world are experienced and clever enough to do so without we die on the table.  Yes this is harsh words but it is the truth.  And yet, we are not told that this implant is permanent.

So what can you and I do to change things.  First report your mesh complications to the FDA.  Swamp them with our pain.  I know you are hurting so much all you want to do is make it stop.  I understand because I have had three bad days when getting off the couch has been difficult.  I know the very thought of doing anything more in any day is soul destroying for you, but you have to try.  If you don’t more women will suffer like you and me.  We have to stand up and be counted.  Not one of us can close our eyes to this vast problem.

Then what?  Tell your neighbors, your friends and strangers what has happened to your life because of a product called mesh.  A day ago I was in line waiting to pay for a few groceries, barely standing because of pain.  I didn’t drive to the store like I used to, I had to be driven there because the pain no longer allows me to drive.  I leaned on the shopping cart and wished the line would hurry up and clear.  I just wanted to get off of my feet because of pain that racked my body.  As I stood there I noticed a woman in front had a packet of Poise incontinence pads in her cart and I knew I should speak to her.  So I did!  I told her what had happened to me and that I wish all I had to worry about was buying a packet of Poise.  At first she looked surprised and then she thanked me for telling her and wished me well.  Why did I tell a stranger?  Because I NEVER want another women going through what I am going through.  I never want her to be up at night wondering why this has happened to her.  I never want her to wonder why her fundamental rights were taken away because no one explained they were putting an implant in her body.

What can you do?  You can help others by getting the word out.  First report your complications to the FDA.  If you don’t do it, no one else will.  Not your doctor.  Not lawyers.  No one but YOU.

Here is a link you can go to.  If you can’t sit long enough to fill out the form, get on the phone and call them.

http://www.fda.gov/MedicalDevices/Safety/AlertsandNotices/ucm142636.htm  Once you have filed a report, you will receive a letter of confirmation in the mail.  Keep it and file it just like any other medical document.

What changes do I want to see from the from the FDA?  Of course like other mesh sufferers I would love these products to be totally be removed from the market so that not one other person ever experiences what I am experiencing, but realistically it will never happen.  So I will settle for these changes.

If a woman goes to doctor for any medical problem and the surgeon decides to use mesh in her body, then a pamphlet of disclosure from the manufacturer should be produced, discussed and the woman should sign for receiving it.  The discussion should be a full disclosure of ALL side affects. That signature should be kept on record by the doctor as proof she was given the explanation.  If no signature is on record then the doctor should be reported and fined.

IF the woman still chooses to go through with an implant, then at the hospital as part of her prep, she should be questioned that she had been given it BEFORE surgery, to make sure no one slips through the cracks and the surgery done without she has a full twenty-four hours to read and mull the information over.  They call you at the house as part of a check in, the day before the surgery.  This should be asked at that time and the answer noted by the person calling.

When a woman signs the release to leave the hospital, she should be handed the make and number of the implant and told to keep it in a safe place and report any incidents of complications to the FDA.

Every mesh implant surgery should be kept on record for seven years minimum so that continuing complications can be recorded.  NOT three years as is being discussed at present.  This is because so many woman are coming forward to me with up to seven years since surgery with mesh erosion.  I would prefer a twenty year study, but of course that would be shot down by all concerned.

So what are your thoughts on this as a mesh implant sufferer?  Leave your thoughts here and remember, no one but me will see who you are.

If you need a mesh removal surgeon, please contact me.  I am here to help.