I have never been one for making New Year’s resolutions because I often review my life to make changes at any time if I need to. To me these are called ‘new plans’ that I hope will become good changes. Not all work out but if not I will make another new plan and see how it goes. I don’t make tons of plans and then stick to none of them. I make one that seems sensible at the time and then I work on it to see how well it works. If it doesn’t work well I know it is time to make another and not follow the ship as it sinks.
New Year’s Eve 2009, marks six years from when I first went to see a urogynecologist to find out what type of prolapse I had. I was total ignorant of these things, having been very healthy my entire life and never having any female problems before. I did not know when I kept that appointment that it would be a changing point of my life forever more, and I would have to make several new plans to try to combat the bad results. I did not know at that time that in the future I would become disabled, have nerve damage and would never drive again. This realization came slowly and was difficult to swallow. I now know that no woman should ever have surgery without her doctor hands her a pamphlet of what is going to be used in her, so that she can research long before her surgery date. Of course six years ago I did not know any of that and through this blog I have spent countless hours trying to share this information with other women.
I had implant surgery on March 9th 2010 without understand anything about what was going to be done to me and I believe this is all designed so that we remain ignorant or we would all walk away from these surgeries before they happen. I was not incontinent and did not need a sling, in fact Dr. Raz at consult June 5th 2012, asked me why on earth my implant doctor would do that to me. I had no logical answer. However now I know that this happens every day to women and frankly it is a way to make a lot of money, both for hospitals and doctors and most of all, all the mesh manufacturers. Once they complain about pain or problems urinating, women are left to deal with all the health issues that follow because no other doctor will take on a mesh injured woman unless they travel far from home.
I am fortunately on the good side of mesh removal. 2012 & 2013 were really hard on my body with three surgeries in nine months. There were times when I wondered would I survive and I kept writing all that happened to me without holding back anything. I believe that the whole truth is important to tell because mesh complications can be a very long and painful journey. Therefore my aim is to warn women BEFORE they undergo these surgeries and NOT believe the doctor who tells you to stay off the Internet because they don’t use THAT kind of mesh any more.
They will also give you high figures of success rate from their surgeries. In fact don’t even recognize their failures. Women who complain are either ignored or turned away. The biggest thing you should remember when you walk into a doctor’s office because you believe you need a hysterectomy is that doctors are HUGE liars. They lie to get you in the door and make money from doing your surgery. Why would they lie? Student loans that take years to pay off, or lifestyle that needs a lot of income to keep. Or simply that they do not want to believe the truth of what mesh does in the human body. Even worse some are totally inept and should never be doctors, especially surgeons.
How can you protect yourself from lying doctors? You can’t. Many are masters at small talk and bedside manner. They will make you believe they know exactly what they are doing and it will never happen to you. The will quote high rates of success and no failures. How do I know this? I have lived it. My female implant doctor looked me in the eye when I was going through hell and told me I was the only one. However sitting in her waiting room my daughter met and spoke to another woman who was also going through hell. Don’t believe that female doctors are any better than male. They will lie just as much as men.
So now we begin 2016. You may be reading this for the first time before you have a hysterectomy or prolapse surgery. My advice to you is take your time and learn all you can by reading this blog. Read every bit of my story and if that doesn’t scare you to death then you certainly aren’t normal. I wrote for one reason. I want to save women like you go through the hell I went through.
If you are a woman who has been in denial for a long time, or never even knew mesh was put in to you when perhaps seven to ten years ago you had a surgery to fix your female issues, then you need to take your time before you jump in to go to the nearest doctor close by your home to have removal. Chances are it will be one of many partial removals and your health will decline and your mental health be at its worse as you endure one surgery after another.
I spoke to a woman not long ago who reiterated her story to me over the phone. We were chatting about the things in life that you have no control over while enduring mesh complications. Sometimes it is all the health issues you are dealing with from long term complications or other times the people around you who also go through their own health issues and you feel helpless. She told me about her horrendous 2015 when she slipped and fell on ice and endured awful injuries that took many months of healing and the help of others to get through it. She is very grateful to have wonderful family who helped her through, but many women don’t. She told me about when she began realizing something was seriously wrong after ten years of health decline. She was like most women working when one day she could not stand up at all. Yes years of mesh can do that to women. She had no clue it was mesh but began searching and found my blog.
I stay in touch with women who have endured this many years of decline and even more, who were never aware it was mesh causing all their health issues until they found this blog. Some endured back and hip surgery for their health problems when all along it was mesh. How does that happen you may wonder? Simple. As mesh remains in our bodies over a long period it shrinks and causes damage to nerves and muscles. So even if you had no problem after the sling was put in your body, years later you probably will. Every doctor you go to will tell you it is something altogether different than mesh complications and they will not listen to you, even when you are pretty sure it was the mesh.
If you have been trying to deny mesh is your problem because you are a single mom, a bread winner in your household, have young children, non-supportive partner or adult children, I can only imagine how hard this would be. Who will pay your bills you may wonder? The sad part is as your health declines where you go for removal may be taken out of your hands, because you are far too sick to travel. Only you can base a decision on if/when it should be removed and no one should do that for you, but please look at yourself objectively. Are you really living? Do you often think you won’t live to a ripe old age? Do you barely get through your work day and then hit the bed when you get home? Or you can’t sleep in a bed because your never get comfortable. Instead you sleep in a recliner although barely sleep even there?
Is your health deteriorating not only from mesh but all the pain killers you take to get through the day? Has your pain increased so much, you now take a lot of types of medications which are also causing you horrendous side effects? I did write a blog to get women to look at the medications they take and see if possible they could get off the worse ones that are causing more damage to their bodies. You can read that blog here
No one else should tell you who you should go to for mesh removal and before you go to anyone, you have to learn as much as possible about what is in you. Many women don’t have one type of mesh they have several and removing them far more complicated than removing one sling. The first step is to get all your surgery reports and find out. Read everything carefully and when you come across a product that you realize you had no clue about, research to learn more. Many products are used during these surgeries but they too can cause severe complications. Implants have to have a number and manufacturers name and can be in the operative report of in the nursing notes. An implant is anything placed in your body that is not your own tissue. That means it can be cadaver, animal or manmade mesh Learn more here
Take action for yourself and learn, and not rely on the words of others who wish to influence your decision. They don’t know you or your situation no more than I do. I do however know far more about types of mesh and how they are put into women’s bodies, not just from researching but also from sitting on the phone for hundreds of hours listening to their stories. In fact I am probably more versed on this subject than most doctors, EXCEPT those at UCLA who not only remove every type of mesh, but also mesh that has been tampered with by partial removals. These doctors see all the women whose partial removal doctors abandoned them when they didn’t get better.
So what if your doctor looks you in the eye and says “I don’t use that mesh? Read this blog
So you don’t understand much about types of mesh or if yours has anchors? This blog will help
You may not have leg pain. You may not have infections. But there is so much more to what mesh can do to our bodies. Some women spiral quickly to serious ill health after mesh implants. You can learn more here
Are you ready to make a plan?
The following blogs I hope will give you all the information you need if you decide to get the mesh removed at UCLA.
First get your records because you need to take all operative reports or other reports with you when you go for consult. Read this to help you understand more
If it has been many years since you had surgery and you have no clue if you can get your records, read this blog
So you live on a small income and think you cannot afford to travel far from home and there is no hope? You can get a free flight for you and a person to go with you if you are low income. You can get discounts on the hotel. But like everything in life you have to prove what your situation is. Read this blog
This is what one woman did to get to UCLA and she will be out there the end of January to have surgery. She made her goal because she refused to believe it wasn’t possible. Read this blog
If you need to stay a while there are ways you can save money on a place to stay. Read this blog
How will you get food while there? I spent so much time while out there for surgery trying to give you as much information as possible. When I went with a friend for her consult things were really changing at Ralph’s grocery store. They expanded and they now have a huge assortment of ready cooked food which your carer can walk to from the Tiverton hotel or the hospital and bring to you, or feed themselves during your hospital stay. You can reheat anything at the hotel and all you have to do is ask at the front desk how to do it. Read this blog for more information
This blog will also help you learn what stores are near UCLA
As you get closer to your removal surgery date, you will more than likely experience anxiety. I did too and this is normal. This blog may help
I have always told women that mesh is a journey. Once we have complications it may mean a long journey. To help you or your family understand, I have written many blogs through my journey and there are many links on this blog. read this blog
What about after removal surgery? It can be very scary knowing what to do and how to help yourself. Read this blog
It takes me quite a while to find blogs and give you links because this blog is the 375th one available for you to read. Give me a few days and I will give you more links to how to help yourself through the long journey of waiting and after it has been removed. I will share with you my experiences of supplements and what I did to survive. In the meantime I want to wish you the best 2016 possible and a brighter future.