To Mesh or No Mesh
Today is Easter Sunday, both a religious and a family gathering day for most people. A time to gather with others and reflect on life and your religious beliefs. But for thousands of women around the world they struggle with endless pain and they cannot get themselves out of bed this morning because they didn’t sleep at all last night and no one heard their cries. I know how they feel. Before my mesh was removed in October of 2012 by Dr. Raz at UCLA I was exactly like them and I do hear their cries because of their comments on this blog. And I care profoundly.
Easter for me is a very special time. A time to reflect on many wonderful memories in my past and a very sad one. So I spent the last few days making miniature things for fairy gardens and writing blogs about them because it gives me joy. I do this because of all the women I listen to and all I read through the comments on this blog. Terrible stories of lost women who don’t know where to turn. I do this for relief of all the sadness and pain of other women. If you want to understand what it is like, take your pain and times it by one thousand and you will know why I have to break away from it at times and find some peace.
Easter in my childhood was always about happiness because it came around spring time. I loved the bulbs pushing up through the earth in my neighbor’s gardens in England where I was born. Winters were damp and chilly and although spring was often cold, the arrival of spring flowers meant that summer was on the way. It made me feel happy and renewed. It still does although in Texas spring is a lot different and the cold weather bulbs don’t do well in our climate. But there are many signs of spring that make me smile and I welcome it.
Easter forty five years ago was when I first met the man I would marry. I was away from home at the time on a four day weekend with my sister, when I met a man that would sweep me off my feet. I felt the love of a man for the first time in my life and that love was sustaining for thirty five years until his death eleven years ago on Easter Sunday. Even though that was the saddest Easter of my life, I celebrate the life I had with my husband and enjoy everything around me that reminds me of him and of spring.
Today even though it is a holiday, I decided to write this morning to let women know I understand what a painful mess their lives are. I can’t give them a lot but I can give them a few words of comfort. I can also share some of what I read here and how women’s words for me are often stressful. Several days ago I read a comment that made me both sad and angry. I know it is not the woman’s fault because she is a victim of marketing. I too tried to find answers five years ago and went on the Hyster Sisters site. But it did not take me long to realize they did not want to know about mesh and the site was more about making an easy living. If you don’t believe it then look at all the advertising on that site. Those ads make money and they don’t want to know about women’s mesh complication issues.
I knew that a woman had been trying to let others know on this site what had happened to her and she left my blog link for others to read. It didn’t take long before she was told not to leave it there and not to mention mesh complications. Why wouldn’t they want others to know? Because they will lose their sponsors and their income.
You can see on this site that there are no advertisers. No links for doctors or lawyers. No way for me to make one penny off this site and yet it does cost money to run. But I have a wonderful daughter who set everything up and she pays to keep it here by finding the best deals possible to get it out there for me to help other women. I was tempted yes of course to have adverts on here. After all I had gone through and all my savings gone and I had no insurance back in 2010 when mesh was ravishing my body, income of any kind was tempting and yet it was dirty money so I refused to take it. I dumped all emails from lawyers and loan sharks who came here and contacted me, because I just could not do it. It was blood money.
So when I read this woman’s comment I knew she had found her way here from the Hyster Sister site, or from a woman’s site who makes money from writing about POP and she also does not want the truth on her site either. A long time ago I tried to tell her what was happening to women including myself and she told me in no uncertain terms not to bother her again. So I didn’t. What I did do was keep writing on this blog. Kept researching to find out why I was living in pain and this blog grew as my knowledge grew. That growth brought me knowledge from other women who were also injured and they told me their stories of hell. Then I knew it was the mesh causing all the pain and sadness in all of our lives.
This is the recent comment left on this blog.
“My other comments include do not allow an obgyn to treat you for POP. See a urogynecologist. Do ask for a pessary as they can be very helpful. If a doctor tells you you don’t need one or you wouldn’t like it, insist or find another doctor. Ask for a referral to see a pelvic floor physiotherapist as that can be hugely helpful.
Even with a pessary and pelvic floor PT, and even with any kind of POP surgery, a POP diagnosis will change your life forever. No more heavy lifting, pushing, digging. Avoid high impact exercise like running or power walking. Address any medical issues that affect your pelvic floor such as constipation or chronic cough. Learn the proper way to have a bowel movement (pelvic floor PT Michelle Kenway has a great video for this) and get a Squatty Potty (available at Bed Bath and Beyond).
Making a decision about surgery is very difficult. I am facing that myself right now. I am not convinced all mesh is bad. I am only 54 and don’t plan to spend the rest of my life barely being able to walk. My pessary helps but I still can’t walk for any length of time. My urogynecologist is convinced the mesh bladder sling is the best option for me. I will continue to read up on it and then decide.”
This is why that comment upset me. I chose a five star surgeon who was a uro-gynecologist five years ago when I went to find out what could be done for my rectocele. That woman doctor convinced me that while she fixed my rectocele she could fix everything so that I would never have an incontinence problem. I did not have one then and I let someone else take control of my life because I thought doctors knew best and now look at me five years later. I live in pain and my life is limited because I am disabled. What this woman needs to know is that going to any doctor, urologist or other can result in the same mess. Why because they believe that mesh is the gold standard treatment and it is all they know how to do any repairs on women’s pelvic issues. So don’t look at a title. I answered this woman and told her the truth. That ALL mesh is giving the same issues and there are few doctors who can fix women without using it. Those few are on a link at the top of this blog but be aware that I don’t know some of them and they could also try hard to convince you that mesh is the answer and it is not the same as it was when it was put into our bodies. DON’T BE FOOLED! It is the SAME, just new names and new packaging. MESH is MESH and ALL MESH IS BAD!
She is doing something right. She is taking her time before she decides on a surgery and although a pessary takes time to adjust to I can tell her and other women, that women who’ve had mesh complications and had a pessary before their surgery told me that they wish they had stuck to using a pessary. Why!? Because many surgeries later, their tissues are destroyed and so is their lives. So take your time to decide what you want to do and don’t jump in and find yourself living like me and the thousands of women out there who wish they had been told of another way. I was not told about a pessary and given no other choice. But if you are reading this and you are not screwed up by mesh, then you HAVE a choice.
This morning I had to check comments and answer them and this will show you another side of what women are dealing with.
“I had a hysterectomy and tvt (tvt is all I know, haven’t seen my op report yet) in Aug 2012. I woke from surgery with excruciating pain in my back. Once I got up and walked it subsided. Recovery was uneventful and I went back to work, as a teacher in Oct. On Oct 26, after a night of walking at a festival, woke up to what I now call “suicide pain” down the front of my right leg from hip to knee. Since I had a herniated disc in my neck 6 yrs prior, with radiating pain down my arm and subsequent surgery, I was positive this leg pain was a herniation in my back. I went to ER the next day, then to primary, then referred to pain management with in the first week for an epidural. The epidural worked and the suicide pain was gone. MRI showed no herniations and I thought I was fixed, no need to investigate, I went on my way, until weeks following the injection I was not walking right, the suicide pain was gone, but my back hurt and my leg didn’t work right. I needed another injection in Feb and in March I was referred to neurologist for Multiple Sclerosis work up. I didn’t have O bands in my lumbar puncture and only had one or two lesions on my brain and spine, six months later mris showed no new lesions, so MS was basically ruled out, Neurologist did EMG which showed problems with muscles and nerves in my leg. I was having other symptoms, spasms in places other than my leg, an overall unwell feeling and I was vomiting each morning. My CRP was high, as were white cells and ANA was positive. So referral to rheumatologist who believed I had ankylosing spondylitis, but my x-rays only showed mild inflammation and my B 27 test came back negative. He thought I had polymyositis, so he took me off cholesterol meds and wanted to begin steroid treatment long term. Since my test results were in conclusive I didn’t feel comfortable doing that. Got a referral to another rheum who wanted to do thigh biopsy, saying that if it was positive then steroids really were the right treatment. MRI of thigh showed no inflammation, so no biopsy, but my rnp antibodies were high and with no other antibodies present the rheum decided I have mixed connetive tissure disease. By this time it was fall 2013, I have continued to have epidurals to keep right thigh suicide pain at bay. Since blood levels were not too high, there was not much treatment options, wait for new symptoms and continue epidurals as needed. The epidural doc, pain management doc, says pain is due to arthritis in spine, not related to hysterectomy and he couldn’t see any compression of a nerve even though I kept telling him I was sure that was the problem. Fast forward to Feb 2015, I have had injections every few months, now left back and leg are having problems, muscle spasms have gotten worse. Pain doc acts like I am unable to handle pain. I am on lyrica which I love, gives me energy and helps me walk better. I have vicoden which doesn’t work on nerve pain. My blood pressure has been up to 177/88 and 160/88 in the past few visits. I am sicker than ever and feel as if I am slowly becoming paralyzed. Pain doc says its arthritis and i am not going paralyzed and I will need epidurals and if I lose weight my pain levels will go down. I am beginning to believe the mesh or the anchors have messed up the nerves. Humana, m insurance, has a second opinion program that is free to me, where my records are sent to experts all over the world and they will send me and my doc opinions of what might help and experts I can see in my area. Not sure if I had posted my story here before, but believe it belongs on this site for sure. I will keep you updated, especially if it turns out to be tvt mesh related. Thanks for this blog and need everyone’s participation and knowledge. I need you all as much as everyone here seems to need each other.”
You can tell now why I decided to write this morning. It made me both sad and angry to read this woman’s story and this is why. Waking up after surgery and having so much pain in her back is a sure sign something went wrong. This is because of the way this surgery is done because it is a blind procedure. That is why so many women are screwed up immediately and suffer severe nerve damage complications. Mine was a TVT and is has badly affected my femoral nerve. I did not know this until I went for consult with Dr. Raz and he did a nerve block at that time telling me it would tell him if it was what he thought was my problem. Femoral nerve damage. It was! I felt relief for a short time but then it came back again. Leg pain, hip pain and back pain.
I know women and doctors will blame the issues on things that a woman has dealt with in the past rather than look at mesh. But I had never had those issues, no back, hip or pain in my groin or down my leg. But I was told I must have had it before my surgery, by the woman who put it in me. So don’t believe any of it. IT IS THE MESH SURGERY!
The other [art that is so scary for me when reading her comment was that all she is going through says to me that her body is rejecting the mesh. Why? RA unless you had it before the surgery is just one of the auto immune symptoms. Many women are diagnosed with connective tissue disease after mesh. Look at all she has gone through since mesh was implanted and look at her state of health. Why?
Mesh has various chemicals on the outer covering and it holds biofilms which can cause major health issues. Research is being done by Dr. Raz right now but he’s not there yet with all he is learning. One day I hope he writes one great paper because no one else will. He has removed more mesh than any other surgeon and he does NOT put it back in women because of all it does to our bodies. Yes he used it in the past, but he hasn’t used it in some time and no longer will. So don’t leave a comment here telling me he did put mesh in at one time. He has said he did but like all GOOD doctors when he realized what it was doing to women he stopped using it.
So if you go to a doctor and are told “It’s the surgeon’s fault as they don’t know how to put it in right” remember that is crap! If you are told that it is the type of mesh that caused other women’s issues, and that doctor cuts and installs his own type, then remember, it is crap! Women in the past had other mesh installed and they told me the results are the same. At that point you need to know that it is no longer manufacturer’s error and you don’t have a leg to stand on when you find yourself in trouble. You are on your own…. And many surgeries later you will find what destruction of your body’s tissues is all about.
This blog is full of comments left by other women but if you came here and skim a bit, then leave and make up your mind all the thousands of women don’t know what they are talking about then all I can say is, good luck. You are just what the mesh manufacturers, bad doctors and these sites are looking for. You are gullible. Just remember you will be playing a game of Russian roulette. Which bullet is yours? I can’t convince you mesh is bad. I don’t have the energy to devote to convincing you of a true fact. There are far too many injured women who just want hope and a kind word, so you are on your own. Once again all I can say is good luck to you and your future.