Mesh Can Take Your Dreams Away

Today I decided to try something different.  I asked my daughter to take a short video of one simple ordinary thing you do in your daily life that can be taken away from you by mesh.  Getting in and out of the car.  You will find the link at the bottom of this blog.

I have struggled through listening to other women’s stories by email or telephone and I know how diverse our symptoms are.  I also know women are being told that their symptoms have nothing to do with the mesh products implanted in their bodies.  This is due to them having every conceivable test run and all came back normal.  There is a reason for this.  Mesh is undetectable by M.R.I scans and E.M.G’s are determined by the person giving them.  E.M.G’s are up to interpretation.  I know there are so many women who undertake these tests and then reach the end of their rope when they are told nothing is wrong!

I could tell you that you are one of the lucky ones who if you wake up from surgery and feel agonizing pain that you will get the help you need.  Sadly, even when you are in agonizing pain, you would think that there could not possibly be a doctor on this earth who would not recognize this surgery is the culprit of your pain and do something about it.  That is the logical thought in all our heads.  However, the opposite happens.  Women have to yell, kick and scream, not just from pain, but from trying to get their doctor to listen and act yet and still they do not listen.

Then there is the other side of the coin.  I am on that side and so are countless numbers of women who react slower to mesh and the niggling pain begins in a very small way and then continues so slowly, so that doctors absolutely refuse to recognize it is the mesh.  Oh!  They will send you off for every test imaginable IF you have insurance.  Then when all avenues have been exhausted, they still don’t listen to you.  The lucky (unlucky actually) ones will be diagnosed with Fibromyalgia or other obscure diseases that although gives comfort for the short term, it does not give answers as they go down a long road of deterioration.  There was a cause in the first place!  You were not born with Fibromyalgia.

How each of our bodies react to the petroleum based product they call mesh, can be so vastly different that it is difficult to say it definitely is the cause if it has continued over many, many years.  However, although you continue to want to believe your doctor with whom you have put total faith and trust in, you know deep down that if you are searching for what is wrong on the Internet and find this blog, then you know YOU ARE NOT IMAGINING your symptoms.  It is hard because we give all our power away to our doctors and would rather they tell us what is wrong and we can get on with our lives, all fixed.

Although many believe they do, doctors do not walk on water.  They are human and if they are doing their job right, then they can learn from the men and women who sit in front of them and earn their crowning glory.  There are exceptions to the rule of course.  There are good doctors who enjoy learning and improving others lives.  Of course they work in an environment called a business, but it should not rule out the hypocritical oath they took to be a doctor.

So what can you do?  First believe in yourself.  Then keep hunting the right doctor IF you can afford it.  If not, then you are like me, screwed!  Sorry, we are.  However, you can join the fight against this continuing on and hurting other women by reporting your mesh reaction to the FDA.  I can’t stress this enough!  How can we bitch about our government if we are sitting on information that ‘could’ change things for every mesh victim, both men and women.  It’s time we stop being afraid and take action.

http://meshangels.com/2011/01/report-to-the-fda    here is the direct link to the blog I wrote on the subject or reporting your complications to the FDA.

Now for my video.  it’s not an exciting video and I look like a really old woman, which I am not.  I don’t like everyone seeing how bad I look but it is the only way I can show this affects real people.  I am a woman and I would rather look like a picture of health and happiness.

Until I had this surgery I was always up a ladder working on my house.  I had a dream and a future and worked hard to get there.  This product took all that away from me.  To show you what I say is true, here is another very unflattering photo, not intended for others eyes, and was only taken as part of a diary we have, while building our house.

I am a real person and this proves what can happen from a mesh implant.  Closing your eyes to what can or already has happened to women is a travesty.  I will keep on fighting to change things.

15 Comments

  1. DP

    I have read your blog, and I truely thought you were telling a carbon copy story of the pain and thoughts of the past 3 years of my life. I am so so sorry that you have had to go through this along with no I nsurance. I am a 41 year old female who had a total abdom. hyst. along with a transvaginal bladder lift in 2008 and just 2 weeks ago I was just diagnosed with ersion and now I am scheduled for surgery for removal of the sling on the 18th and I am scared to death. I have been to countless doctors and I developed fybromialgia along with seeing a rheumatologist for the pain. I have been told time and time again that nothing was wrong with me from the doctor that did the surgery and completly diregarded. I feel so robbed of my life!

    Reply
  2. VB

    I look just like you when getting in and out of my car, getting up from a chair, out of bed, etc. I am 57 years old and feel like I’m in my 90s. My pelvis is so weak and fragile from repeated mesh removals. I am very fortunate to have my husband’s insurance, but it’s still cost me thousands from my retirement to travel out of state and the co-pays. Because I was ignored for years by doctors, when I finally found one good enough to diagnose my problems, the damage was too far gone. I have severe nerve damage. It was hoped that with the mesh removals, I would recover completely. So far it hasn’t happened yet. I’m told it could be one or two years for nerves to calm down, if they ever do. I had my first mesh sling and posterior repair 7 yrs ago. I complained that something wasn’t right, too tight, SUI still the same, gradual increase in pain. My doctor said the mesh to repair the rectocele wasn’t sufficient so I trustingly let him stack another one after several years after the first. The pain increased tremendously and this time I was told my bleeding and foul odor, granuloma was my fault, I was a slow healer. During my first mesh removal by different doctor in another state, he found severe erosion, infection, migration into the rectum, contracture, and the bladder sling was incorrectly positioned to begin with! I still have an “arm” in my gluteal/perineal area because that’s my good side (not severe pain). To remove it involves high risk of nerve damage. This whole decade as well as the rest of my life is forever changed for the worse. I too feel so robbed of what should have been my prime years. I just started a new career that I loved and I can’t do it. I can’t sit, stand, pick up things, bend, twist. I cannot function like a normal person. I take strong pain medication, but the pain is always there. I feel like this is on the level of Nazi Dr. Mengele and his horrendous experiments on the innocent. We too are being experimented on, for greed and with the FDAs approval. God help us.

    Reply
    1. lavalinda

      This morning I could barely get out of bed for the strangled pain in my leg. I reached for my walking stick and carefully took it step by step in agony. I sat on the toilet a long time wondering if I really wanted to get up because I knew the agony and torture I would feel. Somehow I did it and brushed my teeth, hanging onto my stick for support. I have been up three hours and I am still trying to get myself going and put mind over matter. It isn’t always easy. No man (men for hernia mesh) or woman should have to go through this and become a shell of the person they once were. I still fight to keep my hopes and dreams alive, but it is mired in pain and a sense of great loss. I know where you and every woman who writes or contacts me is coming from. You travel through life in periods of pain, despair and attempts at living your life. Mesh manufacturers are living their lives without this trauma. Every CEO should be given a mesh implant to see which ones will suffer the way we do. Only then will they get it.

      Reply
  3. Kathy

    I feel like I am not alone. I had surgery Feb 8th 2011. When I finally began to heal I got this “hanging” feeling out of my vaginal area. I had these horrible shooting pains( I am on Nerotin) which helps immensely! The cramping and ache I feel. I get tired easily. I had to laugh about getting out of the car. I look old. I have a handi cap sticker. People don’t understand the “normal” life is gone! If you do have a decent day you pay for it later on for days! Walking is taunting. Driving at times is painful. Standing, sitting ,walking, driving, sex… the burning you have when you Pee. Oh gracious. You take a sigh and go. It’s like you have a UTI ALL the time! It’s a fear of everyday things. People don’t understand that. I have been Dignosed with Pelvic Floor Disorder. If you see a Physical Therapist make sure they are certified! It has helped some. Does anyone have the adhesions? That’s another thing I have inherited. I had this done at a military hospital wtih a civilain contract doctor. The doctor was GONE! So becareful. He didn’t tell me all the risks invvolved either ONLY infection being asked several times no worries.. Why shouldn’t I trust my doctor RIGHT? I have fibromyalgia too… No problem no worries…. This year has been devistating for me and my family. I hope doctors begin to see what is going on! I wish you all health and normalcy soon. Kathy

    Reply
    1. lavalinda

      Your story is that of mine and many Kathy. But there are a few great surgeons. You said this was in the military. Are you still in it? I am going to send you a private email to try to help you. In June I will be having my first consultation with a great removal specialist. I have HOPE and you can too. None of us know what our long term health will be after complications from sling surgery, but we have to have hope now. That is all that gets us through each day. There are SO MANY of us, far more than I could ever have possibly have imagined. I am so happy that some of you leave your comments open to the public. You are helping other women realize that they are not alone either.

      Reply
  4. Rpain

    I have been in constant pain since October 2011, before that off and on pain. I had a mesh sling put in in 2008. I got hurt at work at worker’s comp sent me to 2 dr.’s that say nothing is wrong with me. In my research I think I have fibromyalgia now. I have all the symptoms. I am now wondering if there is a connection with the mesh sling, getting hurt at work (trauma) and fibromyalgia? At this point I am waiting on worker’s comp to approve another test and I don’t think they will. I have appointment with a urologist next week about my mesh. Has anyone out there developed fibromyalgia from their mesh sling?

    Reply
    1. lavalinda

      Many women have and I wrote a blog about it here. Follow down and you will find it.

      Reply
  5. dc

    Linda,

    I have to comment on this video… I want people to know that I am only 46… and had Monarc Sling (TOT) surgery last Feb 2012, for SUI. So, only 1 surgery, and only 7.5 months ago, and I am already walking like you do in this video!! Except, I use a crutch, because I don’t think a cane gives me enough support.

    When an orthopedic doctor first told me back in May that I might want to consider using a cane, I was appalled. I was like, “what?!? no. you MUST be joking.”… Well, now, I need more than a cane. I use a crutch, and I take pain pills… something I know you do not do. I don’t like taking them, but I do feel like I can’t even move at all without them. I also have handicap parking, and can’t do many of the activities I did just a few short months ago. No walking my dog… no shopping with my kids… no vacation this summer… I work but needed to reduce my hours, and even that is so hard.

    The parts in this video that really gets me, are
    1) when you lift your leg with your arms and set it in the car
    (YES! that is exactly what I have to do!), and
    2) when it’s obviously so hard for you to get up.
    That is also how I am.

    I’m 46, I have 2 boys, 15 and 10 yrs old, and feel like I’m 90 yrs old. It is ridiculous… oh… but, hey… I’m not peeing when I sneeze, right? Woo Hoo! >:/

    So, yeah… for anyone who stumbles on this… please… please… please… keep reading… and DO NOT let them put ANY kind of mesh in you.

    Deb

    Reply
    1. lavalinda

      Yes, I know exactly how you feel. If anyone told me I would be crippled by a mesh bladder sling, I would have looked at them like they were crazy. You would never make the connection as a lay person. There are times I had to use a walker when it is so bad. I am tired of being an old lady when I should not be. I went from working on my new house, climbing up and down a ladder without thought and now it is impossible for me to climb a couple of steps on aladder. I look at the curb when I am out and think “Oh, no, I have to navigate it”. All this from a bladder sling. Who would think this unless you lived it.

      Reply
  6. Tiffany

    Hi. I had a bladder sling implanted in May of this year. I was in the hospital for a couple of days. As soon as my cath was removed a few days after surgery, I tried to go to the restroom I could not go. I tried everything but nothing would come out. I went back to the Dr. Three or four times for them to empty my bladder and had to wear a cath for about a week or so and then had to self cath for several weeks after that. I still have problems with going to the restroom, I feel like I have to pee all of the time and I feel like I have a tampon stuck deep inside me rubbing and aching. At times when I pee it will hurt and throb for a little while as soon as I am finished. My husband has been rubbed raw from the mesh after having sex, so it has changed that part of my life too and it is not fun for me either for it causes me pain as well. What upsets me the most is that when the tests were ran to see if I needed the surgery, all of my tests came back normal. I was scheduled for a hysterectomy and my Dr. sent me to see if I needed this sling also because he said that it would be easier to have it all done at the same time if there was a problem with my bladder beginning to prolapse as my uterus had begun to do . Now I did have just a tad bit of urine leaking, about the size of a dime when I would sneeze or vomit, but other than that I did not have any problems. I did not want this done and should have followed my gut and not listened to this doctor. I went shopping for black Friday, two days ago and after a few hours I was doubled up, sitting on the curb from the pain in my lower stomach and my lower back. My stomach began to swell also. The aching inside never goes away. I want the sling removed and have every since the very first day I could not urinate on my own, but now am fearful after reading the issues that go along with having it removed but am afraid to leave it in as well. All I can say is if anyone is considering this surgery, DO NOT DO IT!!!! There are other options that should be considered before this option is even brought into the conversation.Thank you for your blog and I hope all goes well with your upcoming surgery.

    Reply
    1. lavalinda

      I had my removal surgery 6 weeks ago at UCLA. These are the doctors http://teapapers.com/bladdersling/2012/08/so-much-hope-for-mesh-removal-surgery I am doing very well although had femoral nerve damage before surgery and it will take a long time to see if it will remain. I can tell you it was worth it. The mesh and anchors completely gone and life is so much better. I hope you will have it removed before it does too much damage, but if you do please make sure the surgeon is competent.

      Reply
  7. nadine

    Mesh does and will take all your dreams and not only that but your quality of life and everything you hold dear. It has for me and though i should no longer post on things about myself it remains annonomous to what my real and full name is. You Linda have wrote a lot of me in some of your things and yet I am still trying to find the diary page I sent you and was told you would add. I just can’t find it because there is so much here so much pain from others myself and you for having to hear these our horror stories. Mesh has taken everything from me including the one gift god so lovingly gave me, my son because of medicines I need to take pain away that even with them all still remains and now mesh is not only in my bladder and uritera which from the begining stole my bladder and killed it. My dreams are dashed and life will never ever be the same even after remmoval of what is left if it can be removed and now i need a few procedures to find out what is wrong with my throat stomache intestines colon and rectum causing me no more ablity to go to the bathroom back there either. It has slowly but surely snaked its way into orgins and blood vessils and no doctors take the real time to find out where and how bad the damage is. I am left with spells of dizzyness and fatigue, hurt everywhere and an imp ending feeling of my body dying slowly because of these things the mesh is done and doing leaving me more and more crippled every day week and hour. I have lost my child my life my family and my body and at my younge age should not have these issues which appeared immediatly after mesh was put in and so yes mesh takes it all from us. REMOVE it as soon as you can and if you know its bad NEVER let any doctor insert it or you will die a slow and painful death in your body or soul or mind or all of them as I am and nothing can be done for it. I know I will die but I just pray and hope i get my son back for a few months before it happens so that at least I can die happy with his love and seeing his face which shows me the face of god each day. I take it one day at a time one minute if necessary and try hard to enjoy the world god gave us before I go but that is so hard with this unhappyness due to my child gone and every week i may or may not see him for one hour and all i wish is to hold him and smell him and love him till its time for my body to give out which it is doing now. I know I have not much time left but my advice is to remove it never have it and look at your children love them and find the help you need before it is too late like for me. Live life to its fullest the best we can and pray because he listens and if i must die to save hundreds of other women than I will gladly do so for all those who suffer as I do. love to all and prayers for you not me.

    Reply
  8. Chandi

    I had a mini arc sling put in last year, dec, 21 to be exact…this year I am in extreme right side pain… My life seems over …they said sciatica, got rounds of epidural injections, pains right back, watching the video, was like watching myself.. Get in and out of my car…my knee is swollen, and locked..pain all the way down to my toes…my life is ruined, and no doctor will help me…I’m so depressed..and feel so alone

    Reply
  9. pam

    I have a mesh bladder sling. I had it done years ago but recently I have been having pain in my legs and my lower back hurts but I push through the day thinking I was just getting old. I know all of your pain it is constant. finally I could tell some one who understands. I actually limp when I get up from setting for a period of time. I still feel like I have to go all the time. thank you for listening.

    Reply
    1. lavalinda

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