My daily emails are filled with women who have somehow navigated the world of Google to find this blog. For the first time in perhaps many years they at last have hope because of what they read. Many have followed this blog throughout my journey dealing with mesh. I have shared even my most delicate and embarrassing details to help women understand the pitfalls and fears of dealing with getting mesh out of their bodies. I did it for a reason. When I began my own journey, the path was unlit. As I wrote, women offered me a few guiding lights and I began taking steps to a better future.
It took quite some time before I could begin the removal process as I waited for Medicare and my sixty-fifth birthday. In the meantime I shared other women’s pain and stories. In turn, women left comments here that made this blog real. They made the journey and agony of mesh real. I am forever grateful that they do this because it helps other women begin the removal journey for themselves. It is because of them that even more women begin their journeys to a better life.
Women have amazed me. Many have lived in pain for so many years and their bodies have almost given up. But their brains are telling them don’t! They hold on because of children, their faith or just the will to live. Their tenacity and strength comes from a greater source than me.
I write as I listen to women over the phone give me wonderful stories of women helping women. Last night I took a call from a woman who is about to take the first step of her journey to wellness. She is boarding a plane from her State to Los Angeles for a consult appointment with Dr. Raz today. She called me to share her anxiety and I did nothing but give her hope and a simple message. She is doing something to help herself before she can no longer work and lose her insurance. She knew that of course, but she just wanted to hear my voice and she felt calm again. Then she shared another part of her journey. She told me she works at a school and when they heard about her story, two teachers gave her money to help with the first stage of her journey. That is the gift of women helping women.
I’ve heard many stories before of small church congregations doing benefits to raise money to help a woman get out to UCLA. All it took was for women to stopping hiding behind pride and shame. You have nothing to be ashamed of. By speaking out you will help many other women who have had so many issues since a mesh implant. But they, like thousands of others are told it is not the mesh. The saddest part of this is that women’s journeys should not be fraught with anxiety and pain. Doctors should admit that it could be the mesh, so that women do not go down into a life of illness and despair like the woman whose email I posted yesterday.
She needed help a long time ago and yet she is now so seriously ill, she will die without the proper care and help she needs. Not just trips to Emergency rooms, but the information given freely by doctors that although they cannot remove all the mesh and there are a few doctors who can. If that happened there would be fewer women who are begging for mercy and death as this woman has done.
This blog is written to provide many links to other blogs I have written that will take you to doctors and my own journey through the mesh darkness. Your journey will be different than mine. However, there will be many similarities. I hope these blogs will shed some light and will help you through your fears and give you a light of hope.
Each has a description of what the blogs have in the way of help. Don’t just sit back and give your power away. You can help yourself by boosting your immune system or keep it from leaving you without any defense against infection. You must stay as well as long as possible so that you can begin a new journey.
I call this part of my journey Chapter One.
The doctors of UCLA. Please watch the video and learn more about the kind of doctors you are dealing with and their expertise. http://teapapers.com/bladdersling/2012/08/so-much-hope-for-mesh-removal-surgery
I know the facilities where some women had their mesh implant surgery closed down and some women wonder about how long medical records should be kept. If anyone has any kind of implant in your body, you may want to get the records from your hospital with name and number and store them with your other important papers. Many implants get recalled, sometimes years after they are implanted and your family may wonder what they can do to help you. It is best to have this knowledge for peace of mind. http://teapapers.com/
Another good surgeon. A few days ago I wrote about another doctor who can do mesh removals. This doctor made it easy when he answered questions in writing for me to share with you. This made him a man of good character in both mine and many other women’s eyes.
My consult appointment. I shared many of the costs involved and some of the things you will encounter when going to UCLA. The top question I am asked over the phone is “I am worried about getting out there and no one believes me. Do you think he/she will?” Yes they will and you should stop worrying. It truly is the least of your worries.
Tips about going to UCLA. Other wonderful women made the trips before me and shared tips that could help you. http://teapapers.com/bladdersling/2012/09/mesh-going-to-ucla/
Things to take with you for surgery. Once again, experiences of others play a large role in sharing. http://teapapers.com/bladdersling/2012/10/things-to-take-with-you-for-your-mesh-removal-surgery/
Tests before surgery. Many women worry about what will happen the day before surgery. I wrote my account of what the tests involve. http://teapapers.com/bladdersling/2012/10/ucla-tests-before-mesh-removal-surgery/
About the translabial ultrasound. When I wrote this blog I had not had the test done, but I wanted to share as much as I had learned from other women. The ladies of Canada took the bull by the horns and asked Dr. Raz about this test. They want help for women in their country who also suffer. You can read Dr. Raz reply to their questions here.
My surgery. One of the hardest things to do is write when you are still recovering from surgery AND answering so many emails from women suffering. However, I knew it was so important that women know I made it through. http://teapapers.com/bladdersling/2012/10/ucla-my-bladder-sling-removal-surgery/
Travelling home after surgery. Flying out to UCLA is a huge and difficult decision for us all. However another big fear we all have to face is flying home after surgery. I encountered things I never thought of before embarking on this journey and I shared them with you. My aim is to make your journey easier and with little stress as possible. http://teapapers.com/bladdersling/2012/10/mesh-removal-ucla-travelling-home/
Stop worrying about incontinence after mesh removal, it may never happen! I wrote this blog because countless women tell me their biggest fear is incontinence after surgery. No one can guarantee that won’t happen, but all I can share with you is this. By not having the mesh removed, you could wind up in the shape that the woman who who managed enough strength to send me an email yesterday. Read the post before this one. My aim is that women get the help they need before they are close to dying.
It takes time to heal and sometimes you will feel very down after surgery. Expectations are high when we finally have the mesh removed. First by ourselves because we are sick of being sick. Then by family, friends and acquaintances who have no idea that removal is MAJOR surgery and it takes time to recover. Not only that, but many of us will still deal with major issues because of mesh, even after removal. No one has a magic wand. Mesh is the terrible gift that keeps on giving. However, the fewer partial removals you have, otherwise called revisions by some doctors, the less scar tissue you will have along with many new complications. The truth is we do the best with what we have. None of it is pretty.
You have got to stay well while you wait for surgery. This blog will give you ideas and help with infections that do not respond to continuous use of antibiotics and other supplements you can take to stay on the path of wellness. It is all about self help. http://teapapers.com/bladdersling/2012/09/mesh-my-wellness-plan
Beware of vitamin D deficiency. Believe me I learn from the many women who contact me and I found out about this problem because of them. http://teapapers.com/bladdersling/2013/02/running-a-mesh-marathon
You can pay cash for surgery. http://teapapers.com/bladdersling/2013/03/paying-cash-for-surgery
Money issues. I know you think you cannot make the journey because you don’t have any money. But….People will help you if you ask. If you have fought the battle and now have Medicaid, you can go out to a surgeon at UCLA and they will take your Medicaid card. You will have to pay for expenses and consult, but others will help you if you swallow your pride and ask. http://teapapers.com/bladdersling/2012/11/mesh-removal-no-money
Report your sling to the FDA. I left this link until last and yet it is probably the most important thing you can do. Like everything else on this journey, it is fraught with complications. But… This is your vote to stop this from happening to other women. So when you feel well enough, take the information about your mesh, one, two or three types and report each one to let them know what has happened to you. It is the least we can do for others.
Soon I will begin what I call ‘chapter two’ of my journey. In April this year I will go back to UCLA and have a sling made from my own tissue to help me with the severe incontinence I now have. Just like you, I have my fears and I have to conquer those fears. Last month I took the first step and made the appointment for surgery. By the time I have this surgery; I will be six months from my mesh removal surgery. Dr. Raz did tell me I could have the surgery three or four months after the removal, but I deliberately wanted to give my body more time to heal. I have had to be patient before while I waited to have the mesh removed and I wanted to give myself the best chance at getting well. Now I will take it one day at a time and I will write about this surgery after I am recovered enough to do so. Not because I have a great desire to share my most intimate details with the world, but because I know it will help others.
In two days it will be Valentine Day. I am a widow and my love is gone. But, I send out to the world my love and my wishes that you will soon embark on a journey for a better life. XOXO With Love.