Dying With Mesh

Tomorrow will mark the three year anniversary of when the mesh sling was put into my body and in three days I will have been mesh free for five months. Even though I still have nerve damage and walking is still my biggest issue, I feel grateful that the mesh will no longer destroy my body and further me down a road of hell. I am lucky……..

What saddens me is all the women who are walking around very sick who do not know it is the mesh causing their long illnesses. Women who have been told they have various illnesses over a few years, but nothing is truly defined. In the end they are given pain meds or meds for depression and left to die a long and painful death.

I know they are out there because when in desperation they begin searching for answers on their ‘good’ days, they come across this blog and suddenly it dawns on them that they too could be a victim of mesh. They take action by first getting their records and then reading what went into them, perhaps many years before. Yes, most women do not know that they have mesh in their bodies.

This is why when one lady told me that she had noticed her friend was really going downhill health wise, she wondered if she too had mesh in her. This is because this lady is a mesh sufferer, so she asked her friend did she have a mesh sling when she had a hysterectomy. Her friend of course had no idea, but she said she would find out. She knew something was wrong because she could not bear her own son hugging her because of the pain she felt. As it turns out, when she did get the records, yes she had a mesh sling put in nine years ago. What to do now she wondered? My answer was for her to get a consulting appointment at UCLA and take everything with her. She needed to be examined, but I have no doubt the mesh will be the cause of her downward turn.

Many women wonder how long it takes for complications to arise. The answer is there is no answer that can satisfy our need to know. We are all different. It could be immediately after the sling was put into your body. Or it could be a slow and barely noticeable irritation of a slight pain in the groin, back, or hip. That increases over time until you find it difficult to sleep. Once that happens it often speeds up and then you have a hard time walking and the pain intensifies when you do. Or you could have gone happily on your way in life for five years or more but then you begin to have stomach issues that are often diagnosed as IBS. Or the leg pain begins slowly and you try to exercise more to stay in shape, thinking you must have pulled something. The symptoms are endless for mesh complications. So endless that one kind should never be left out because all women’s symptoms should be recognized. However, the most common are the ones mentioned above.

What happens if you wait? Well I can tell you if you have come to this blog and you begin reading, you will break down and cry first. The tears will be part anguish and horror at what you are reading. Then the tears will be anger tears because you suddenly realize you could have been saved much sooner had anyone recognized mesh complications. Then the anger turns to overwhelming thoughts of “How can I get this stuff out of me now? How can I afford the expenses? Who will take care of my children?” Believe me I have spoken to so many women by now and have cried with many. It truly is overwhelming to think about this all at once. So don’t. Deal with this in baby steps. When you find yourself crying at the drop of a hat, stop and try to enjoy things around you. A child or grandchild. Your garden or hobby. You cannot allow yourself to sink so far into depression you don’t know how to get out. Life is for living, not for dying. Never stop living while you make plans to have the mesh removed.

But don’t ignore this forever. In the end you have to ask yourself this. Do I want to die a very long and painful death? What will happen to my children if I die? I don’t care what age they are, from small to grown, you will want to fight hard to help them through their own life ordeals. You know your wisdom and life experiences can be a good guide for them. So you don’t have a choice. You must get help soon.

The other thing I want to write about today is this. Share with other women. Don’t remain so private with your own complications that no one knows what is wrong with you. Why share? It is simple. Your will save other women’s lives. This is why this woman did such a wonderful thing for her friend. She saw the changes and she asked the right questions. You too can do this. Sharing is caring.

There must be thousands of sick women who had hysterectomies years ago that do not know that they have one or more mesh pieces into their bodies. The only way for them to find out it that first a loving friend suggests that they do. Then they are there for them when they realize they too have mesh complications. Be aware that it will be doubtful if they go to the doctor who put it in them, that they will get any answers. Or if they go to most doctors, mesh will be dismissed. Encourage them to go to the only place that can do the translabial ultrasound to see what is going on with their sling. No other test will show where it is and what it is doing to your body.

I know you will be so afraid and so angry at first. I know because I have been there and at times still do. You should also be aware that you will have flashbacks of anger and sadness for a very long time. This is because we know that women will have these slings every day from now on and we all wonder the same. “How could they do this to more women?” The sad part of dealing with the reality of life is, we rarely get the answers we want. So don’t stay there. Move forward and help yourself and help other women.

I have spoken to so many women over the phone that I lost count a long time ago. But what I gained was a vast knowledge of mesh complications as told to me by the women themselves. It is easier for me to know pretty much immediately that mesh complications are going on. I beg women to get the help they need as quickly as possible. This is because I do not want more women to die.

I have often wondered about the women who never know that mesh has been destroying their bodies for many years. What will be written on their autopsy after they die. I have no doubt that the puss infected abscesses in their bodies will not be written down as mesh causes. More than likely they will be written as cause unknown. You see these abscesses are at bursting point when they are in terrible pain. If they go to a surgeon and they open them up without understanding how to remove the mesh at that point, they will close them up and tell them to get their paperwork in order. Yes, they send them home to die. It truly happens.

The mesh journey is long and very difficult, but we are all stronger than we realize. Don’t give up. Learn to live life again. This link will take you to my journey. I have shared everything about doctors, tests, travelling and even the most intimate details of what the mesh journey is like. I did it because I care what happens to women. http://meshangels.com/2013/02/mesh-is-a-journey

Life is still worth living. Don’t give up…………………

9 Comments

  1. Bella

    This is so true. I feel as if I was sent home to die after my last removal. Just trying to get the funds to get out to UCLA is a nightmare especially when you have children and are about to loose your home or your car. You are right about people not knowing for years. They can be in pain, be sick and have kind of weird things happening to them and never know it is the mesh, this is sad, but a reality. This happened to me, it has been 8 years for me now, but 7 of those 8 I had know idea that mesh was the cause of all my problems.

    The hard thing besides being sick and in pain so bad that nothing helps you is the emotional and mental pain. You cry everyday, you get angry and sometimes you are so caught up in these emotions that you feel overwhelmed, as if you can’t breathe. Your confused. You experience so many emotions at one time it is unbelievable.

    I only wish I had known sooner, mesh has been in me so long now, I know I have nerve damage, I have problems voiding now. So if you have any problems, especially after a hysterectomy or pelvic surgery please get your medical records, find out. You are your only advocate.

    Reply
    1. lavalinda

      Bella there is no way anyone can take away the pain and heartbreak you feel now and all we can do is hope for a chance at a better future for you. I keep trying to find a way to get women like you help but I am constantly fighting a brick wall.

      Reply
    2. Angels123

      Bella,
      Have you tried applying for social security disability? It seems obvious to me that you would qualify. I think that could provide some of the help at least that you deserve if you do not have it already. Blessings to you!

      Reply
  2. Maritza

    Wow – I am home recovering from a supracervical hysterectomy (they removed my uterus/fallopian tubes) my cervix is in place being held by a vaginal mesh also I have a bladder sling I had a uterine prolapse (my uterus was actually down the vagina wall where I was able to see it) – I wish I would have done more research – it seems that although this is my 5th week home recovering – I have already had a bladder infection (with fever) to my surprise – I called my urogyno/surgeon and he said to go to my primary since it had nothing to do with the surgery.. I also noticed that I am now having leakage (urine) never had that problem before – although these past few days I am feeling better I am praying that I am one of the lucky ones. I will be going back to work soon – (but still feel exhausted by the end of the day) I pray for all the woman who are going through all these side effects – I will keep you posted as to how my recovery goes…

    Reply
    1. lavalinda

      Maritza infection is so common and yet doctors still refuse that mesh is the culprit. Continued infections can cause you serious issues and you can die. I know a woman who had her mesh removed 10 months after it was put in her but she had to fight to get it out because the doctors were saying it was impossible it was the mesh. Dr. Rodriguez of UCLA removed hers and when she did, puss flowed. Lisa had already been referred to an infectious disease doctor. You can read her story here and I am going to put you in touch with her. Her name is Lisa http://teapapers.com/bladdersling/2012/11/mesh-brave-american-women-a-tribute You should also look at this blog to see which doctors you can choose to go to if you continue to have this issue. Don’t play around and wait too long. This link will take you to many links so that you understand the journey it takes to remove mesh and how important it is to go to the right doctor. http://teapapers.com/bladdersling/2013/02/mesh-is-a-journey

      Reply
    2. lavalinda

      Maritza, I just wrote a blog about getting your medical records. I hope this helps. http://teapapers.com/bladdersling/2013/03/medical-records-law

      Reply
  3. Jan

    Can my user name be about taking the Mesh out or an adjustment? The Surgeon that did the original Hysterectomy had to sell this new device to me. She “said you will feel like you are 17 again….” and why go into the same area twice. My “revision” surgery is 4/23/2013. I have read a revision is a removal can anyone help guide me before I make a bad decision. I am a Medical Assistant should have been more inquisitive but it is what it is, just need a piece of good luck as I just my home because I could no longer work.

    My home state is West Virginia, Huntington. I live in Denver but wish I could be involved with the court goings on and maybe be able to help others after my health improves.

    If someone would like to educate me on what I should or should not reveal let me know. Like I say I need a freaking break.

    I was just married in Oct. 2006, my surgery was November 15, 2006 so you see my disappointment. Although I am still married I have a blessed husband because this causes such mood swings, crying so frequently depressed, then not but constant back pain, and it began to take over life. Everything still is in controlled by this horrible condition that I was only beginning to show signs of. Do no harm….! She sent me home with a Foley for several weeks into months and also the antidepressant that is associated with the bladder (Amytriptiline) ! I never heard from her ever again and I needed in January to go with Kaiser my husbands insurance! My GP was the husband of my surgeon, two totally different people. It’s a shame on the Medical Community to move forward with this, for the good all American Greed. Two other devices were on recall last I heard , the hip replacement and another I cannot recall. I would love to hear from anyone to help me prepare for this as I cannot live a decent life forward if I make another mistake. Thanks to all of your sharing and keeping it real ! Your Courage is my motivation.

    Reply
    1. lavalinda

      Anything can be removed but all anyone can see is Jan except me. You do need support and there are groupd out there so I will let you know where. This is a hard road to go alone.

      Reply
  4. patsy Ettleman

    Hi
    I was so glad to find this site.

    My name is Patsy. in 2009 i was told i need to have a bladder bowel
    supenction (sp) My 2nd . but i had horrable problems when i got home that have slowly getting worse as time goes by. in 05 i built my dream home on a farm i have owned for 30 years. i had 5 horses. 2 dogs. a king ranch truck horse trailer. and a business i loved. in march of 2010 i lost my business. because i could not work. then sept 2010 my home and my farm. my truck my horses i had to sell because i had no money. my dog of 12 years live with strangers. I had to sell every thing i own family antiques my house hold because i have no place for them to be, i have lived in a homeless shelter because of the pain and bleeding. the shelter told me i had to leave because i couldnt do the chores on the chore list. The free clinics would not help me because of the law suites they wouldnt ever look at me. i have move every mo. from friend to reletives and im out of places to turn i have no place i can go and i dont know what to do. the pain is horrable everyday. ive been turned down by disabilaty 3 time saying it will heal it self if it get it repaired. I have been in the er 5 time this year and they wont do anything but give me meds for the pain . i go home the pain comes back. i get a $5;000 bill from the er every time i go my bills are growing , i cant work, im all alone and dont know what to do but hope it takes me soon

    please tell me the is some place i can go

    Reply

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