Don’t despair join the fight
When I accidentally came across the FDA report that was put out as a warning on July 13th, six days ago, I felt three things after I read every word. First vindication. This is because like so many women all over this country and the world, I had been made to believe I didn’t have a problem. If a doctor can’t see it, feel it or touch it, then it is all in our heads.
The second thing I felt was anger. My anger was at an administration of people called the FDA. Mesh is an implant. It is a foreign body that is not compatible for many people both men and women. In men and women it is used to repair hernias. It has ruined the lives of men as well as women. What the FDA should do is protect patients by passing a law saying that we MUST be told of these risks without question. That after surgery, we should be handed paperwork with the implant number and all information we need to report any adverse reactions to the FDA if need be at a later date. Those of us who struggle with pain after this surgery , should not have to fight to get information that we have a right to.
The third thing I felt a needed to do was to spring into action. The way to clear your head and make yourself feel better is to do something! If you are reading this blog then there are very important steps you can take to help yourself and other women. First if you have not done so, report it to the FDA. That will not be easy because you need information to fill in the online form. Read the FDA report following this blog and make notes of how they tell you to do it and the information you need. More information is here on my blog http://meshangels.com/2011/01/report-to-the-fda The FDA report does not tell you how to read medical records to find this information. I had help from an RN friend to find mine and I wrote it down on this blog.
Something important I must tell you. I spent money to get my records and weeks of my precious time. I was ignorant at that time but now I know this much. YOU DO NOT HAVE TO BUY YOUR RECORDS TO GET THIS INFORMATION. You can go to the hospital where you had your surgery and ask the records dept for the information you need. Print out the blog page with where to find it. Remember, people who work in record departments are not doctors or nurses. They need your help to give you the information you need. Then you file it yourself and make the FDA aware we are many!
You must also ask what type of surgery you had. TVT, TVT-O or other. You must ask what manufacturer made your mesh.
I must make something very clear. A warning by the FDA probably will not make the news. Only a recall will ensure everyone who has had this mesh implanted in their body, would get a notice. That has NOT happened.
Last before I stop writing this blog. We all must do the work to stop this happening to others. We must band together to stop the pain and madness. Don’t look to the next guy to do it for you. Become active in the fight. We need you!
Don’t forget to email me if you want to talk, need help or want to help. Email me linda@teacupmilliner and I will be there for you. I promise.