I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

I just can’t wrap my head around MESH and yet it has wrapped itself around me…

on August 2, 2012

I’m sitting here after midnight still trying to grasp the last couples days events. It doesn’t seem real or acceptable to me that I should be put in this position but it is what it is, for now.

I have been through a lot of crap in my life and the one pattern I have come to notice is that I have not had control or input on any of the events. I have had to figure out how to deal with everything and still be a wife, mother, bread-winner, sister, aunt and friend, but my biggest role was being a caregiver and nurturer to my husband during his 6 year battle with Brain Cancer.

That was my toughest role because I knew that I would be helping him transition from this life to the next. He was a man who didn’t ask for a lot in life, he was content with his family and playing golf.

When he was diagnosed with Brain Cancer we were told he would not live beyond 2 years, he proved them wrong and lived for 6 years and I believe it was the love of his family and friends but most of all his children who inspired him to defy the odds. Everything possible would be done to make him comfortable and it was always his call if he wanted to stop treatment. I think he endured more than his fair share of treatments just to keep me happy…I never asked him but I have always wondered if that were the case.

The interesting thing about the whole situation was that I felt in control and for some odd reason I felt like this was the hand I was dealt and I just had to figure out how to live it. Amazingly I did and I know without a doubt in my mind that I honored all of his wishes.

So, if you can tell your best friend and soul mate it was ok to leave you and give him your permission…then why the hell is it so damn difficult for me to wrap my head around the whole mesh mess??!! This is not the worse thing that has ever happened to me, I have endured more and come out much stronger and yet I am struggling so much with this mesh. The worst thing was lying in the hospital bed in our home rubbing my husbands forehead and watching his kids hold his hand and tell him how very much they loved him and would miss him and then watch him take his last breath, that was my worst nightmare come true…

I, for the life of me, cant figure out why it is so difficult to have our voices heard, to have the corporate world, the medical profession and the Manufactures of the “devices” implanted, hear our plea, put an end to the un-necessary suffering by any man or women due to mesh implants. Is it me raising my expectations to an unattainable level? I honestly don’t think so, I believe in my heart and soul that if this were to happen to one of the wives or husbands of the professionals I named, you would certainly see heads roll and things change in a huge hurry. So why is it we the suffers cant get the same action?

I have said from the very start of this mesh journey that we are “The Failed Mesh Experiment”…no different than the Thalidomide children of the 1950’s and the Agent Orange victims. There was never any human trial testing on the mesh devices which makes us the test subjects. So I feel that it is my responsibility to Advocate and Educate on the dangers of mesh. Should I be in this position, NO, to me I never had “Informed Consent” with regards to my situation but I want to make damn sure that anyone I know who is contemplating this surgery do their research and do not go blindly into the surgery. You owe it to yourself and your loved ones to be informed and make your decision based on the information you have gathered.

As awful as this sounds and it breaks my heart to say this, having Cancer  (I in no way mean to take anything away from the people who are fighting a Cancer diagnosis at present)  is a walk in the park compared to this. I do not say that lightly either, I say it from experience and lets just leave it at that. With Cancer you have statistics coming out of your ying yang, you have all the “medical professionals” in place, you have counselling at your finger tips, you have family and friends who understand to a certain degree what you’re going through because I would venture to say there are very few people who have not been touched and affected by Cancer at some point in their lives. The sad thing is Cancer is no longer the “C” word, it is just apart of our every day living, it has almost become a “norm” for most families. That cannot be said about mesh and yet there are people who are dying from the Mesh devices implanted in them.

We, the “MESH” people have nothing in place in terms of support groups, counselling or even Doctors and Surgeons who believe in our plight because there is simply not enough evidence to support the fact that mesh CAN and WILL make your daily living a literal living hell. Mesh is not a “visible” illness so its easy for people to not take you seriously when you give them a list of your symptoms, instead you are looked upon as being mentally unstable.

Trying to find the “professionals” who will support you and actually help you in your quest for total removal of your mesh device is next to impossible. There are very few skilled Surgeons, especially in Canada who will take on the dangers of removing the mesh. Is it not ironic that they have no problem putting in a mesh device but when you want it out due to the fact it has eroded your vaginal wall or you have 15 or 20 other complications from the mesh,  there are very few Surgeons who will step up to the plate and actually work with you to do their utmost best to get you the help you need whether it be surgery, pain management or physio, and yes believe it or not there are actually qualified physiotherapists who work with you to strengthen your pelvic floor muscles….that just sounds so wrong to me as I can’t fathom going to a physiotherapist to be trained on how to strengthen my vaginal muscles…as if I havent had enough dignity and pride stripped away already now you want me to go to a complete stranger to discuss my privates??? WTF is up with that? That’s another issue I can’t quite wrap my head around.

My life has been completely turned upside down since my bladder surgery in Dec 2009 and I feel violated and alone because I cannot openly discuss in any public forum or even on my BLOG what the mesh has done to me. I have to be careful I don’t name “Manufacturers” because it can be taken as “slander” which would jeopardize my lawsuit. So now not only have I lost my dignity and my pride, I have lost the right to freedom of speech.

Will I ever step back and out of the public eye of “The Mesh” war, NO, I have found a cause that I am so passionate about that I will make it my life’s mission to spread the word about the dangers of “polypropylene” mesh.

For now I need to sleep, I feel like I have gotten a lot of the demons out of my head but I also know that with every new day comes a new fear of the gravity of what the mesh is doing to my life, physically and emotionally. I just need to learn how to live in this moment and enjoy the blessings I have and not what I am missing or may ever have.

My BLOG is my sanity at present, it is a place I can openly ( to a certain degree) share my fears with anyone else travelling this road and we can laugh and cry together and hold each others hand on the days you struggle to keep it all together.

“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength”


4 responses to “I just can’t wrap my head around MESH and yet it has wrapped itself around me…

  1. Ruth says:

    Death is something every human born on the planet has to face. It’s tragic but inevitable. Cancer is seen as the enemy that it is. It’s tragic but can be battled.

    Mesh was devised as something that was supposed to help with certain problems. Humans have a very hard time admitting that they were wrong, to say “Oops that didn’t work after all” or even worse “I’m very sorry.” Especially when money is involved, and it’s more profitable to pretend that it’s okay.

    What seems unbelievable is that the deceit, cover-up, and lies can go on so long and grow to such a massive and global scale.

    We are the ones that are shouting out “But the emperor has no clothes!” Sooner or later the crowd will have to notice!

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  2. Deborah says:

    Hang in there Diane, try to stay strong. You’re a tough cookie, don’t let this break you. I check your blog often to see how you’re doing. Thank-you again for all your information as I have POP & have a gyny who will not use mesh on her patients. It was the first thing I brought up on my initial visit to her. Yes, my gynecologist is a female, per my request to my family doctor when it was time for the referral to a specialist.

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  3. Venita says:

    Thank you for your Blog, its so hard to find information about the women these devices have hurt. I had my surgery in 2006 and it was and is still a nightmare! But as bad and angry as I am I’ve read about the women these slings have destroyed and it breaks my heart. During the same surgery I found out I had CLL (Chronic Lymphocytic Leukemia) and because of this horrible sling I have to self-cath until I either have the mesh removed or have a colostomy bad put in. Part of the sling is in the vaginal wall and I live with constant infections which are dangerous because of my Leukemia (which is incurable). I have urine retention which I NEVER had before I had the bladder sling put in. I have pain down my right leg to the point where I can hardly walk and the doctors keep telling me its sciatica. I knew there was something wrong the day after my surgery when they took the Foley out. I told my doctor time and time again there was something wrong and to ‘please take the bladder sling out’. I’ve seen 3 doctors in my home town, 2 urologist in my home town 2 urologist in Dallas and 1 specialist in Atlanta GA and they all told me that the sling had grown to my bladder wall and there wasn’t anything they could do, but the specialist did say that when it came time to put in my colostomy bag that he would do it. I’m 53 yrs old and I know there will come a time when I will no longer be able to self-cath…I’ve lost so much because of this mesh! My husband and I divorced because being intimate would injure him so I couldn’t blame him. At one point I even asked my family doctor if she could snip off the part of the sling that was dangling and was told that that would be dangerous to me so I still have it hanging in there so to speak. I’ve seen so many doctors and everyone telling me the same things ‘it takes time for the swelling to go down, it can’t be removed, its all in your head’ or better yet ‘it must be something else causing you problems’ which lead to ALOT of unnecessary medicines. God bless all the women having to go through all of this.

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    • Hi Venita:
      I am so sorry you are going through all of this! If you want to find out more info, there is a 4 part post on my MESH…the dangers, complications, etc…check it out..If you have FaceBook there are some great Forums on there as well for you to be involved in, talking to poeple who are also going through what you are…let me know and if you want to go on FB, I will give you the page names..!

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