3rd World Mesh Awareness Day
May 1st is World Mesh Awareness Day. Please share with everyone you know via email or through Facebook and share your story.
This week has been a rough week, but that is the journey of life. However I want to share with you a photo of a wonderful wall hanging I received from a woman I have been helping for quite some time. This journey is so long for women and many never completely recover and just need someone to talk to. I already have a spot chosen for it to hang in my bedroom, but I want her to know what a wonderful and thoughtful gift it is and I will always treasure it. When she sent it to me there was a card and she explained why she chose this gift to send to me.
“Dear Linda; when I was a little girl, looking at the stain glass windows during sunrise, it made life seem so bearable. The colors reflecting in the sun, made my heart warm with thoughts of happiness. So has your kindness towards me. Thank you for the lovely gifts you sent me after my surgery. Also I want to thank you for your advice. I hope you like this quilted wall hanging. It has been made with the greatest appreciate, for you.”
It is still in my studio where I can see it and I pressed it ready to go through to my bedroom where I can see other wonderful things other women have sent me. I am always taken by surprise because I do not help women for gifts or money. I do this because sometimes giving or yourself is the most important thing you can do for another human being. This wall hanging is beautifully made and I appreciate the time it took to make it, because I too have done some quilting during my life time. I am truly blessed by the thoughtfulness of others and I always remember to pay it forward.
I had just this blog finished when an email came in that I thought summed up what a lot of women deal with once mesh has been implanted in to their bodies. I want to share it with you on this most
day of the year. The reason it is so important is because so many women deal with symptoms after a mesh implant and they have forgotten what it is like to think normally until after mesh has been removed from their body. Now read what this woman told me.
“I’d sit here and make excuses for why it’s taken me so long to write an email I promised to write many months ago…but I won’t. Aside from dealing with the everyday minutia of life, I am still fighting the aftershock of the beast I know well, mesh. When I offered to write down my symptoms, what I didn’t expect was the emotion that bubbled to the surface for the first time. Though I’ve written symptoms for years, it was all medical related and somehow I was still performing in my thinking state, not feeling. Going back through all the pain, broken dreams and utter despair was much harder than I imagined. Whenever I thought about the symptoms, I had to feel all the guilt for letting my circumstances change me as a person. I have started this email a dozen times and walked away in tears.
Sometimes I forget how long I existed in mesh fog. It’s when I see how much my daughter has grown up that I want to curl up into a ball and weep for days. Something changed the minute the mesh hit my body. I felt an anxiety I can’t explain. I knew deep down something was desperately wrong, but I could never connect why. It is amazing to me that I kept living with the symptoms that multiplied daily. I will never forget one of the last doctor appointments pre-removal where I was told, “I am sorry I can’t refer you to someone…they will think I am crazy.”
Recently, my brother brought up an incident from childhood that made national news. To my own amazement, I was able to update him in great detail on the event. That conversation triggered what led to my research of past events. It was only one day after surgery when I broke out in hives on my entire body. I spent months awake at night surfing the internet to take my mind of the itching. In hindsight, it makes perfect sense that I had an immediate reaction to a foreign body. Without going into detail, here is a list of other symptoms that were always present from day one and others that showed up:
pain under hip
numbness in leg
eye began pulsing in head
increased sensitivities to EVERYTHING
sores that didn’t heal
I am sure there are more symptoms that I’ve either forgotten or ignored. Feel free to edit or discard this as you may have discussed on a prior blog. One thing I keep thinking would be helpful is to go through blood tests that I had and see what was flagged over the years. I’ve always been extremely sensitive and I think anyone with increased sensitivities will likely have an immediate reaction to mesh.
I’m ashamed that I waited so long to send this email, but proud that I did finally finish it. You are doing great work, Linda. You will never know how many women who will be saved thanks to your tireless effort. Thank you!!”
I know that when any mesh injured woman reads this email it too will trigger her saddest emotions. Unless you deal with all this, you cannot possible understand. I also know many women who are now only beginning the journey to have their mesh removed at UCLA and they understandably fear what is going to happen to them. I have no doubt at times there will be some who want to opt out of the surgery and run away. However, running isn’t an option I would advise. So I hope her email will give you the hope and the help you need to get through your journey of mesh removal. Always remember that you deserve to live a better life.
Now on to another important subject.
If you were to do a search to find out how many people had died from complications that arise after being implanted with hernia or pelvic mesh, every article will say it is very low. However the reason is, people don’t just die overnight. They begin to have so many complications and to deal with them, that they undergo many surgeries and take so many strong prescription drugs to cope, so that by the time they die, their mesh complications are shrouded by other health issues and mesh is no longer a part of the big picture and won’t be blamed for their death. The other reason is, that doctors do not report those complications to the FDA and very few patients do because they are so sick.
You may not know anyone who is suffering from such extreme complications, they are afraid they won’t make it to collect from their lawsuit claim. I know them because they only trust me through their awful journey because I won’t tell who they are or what they are going through. They know I am here to help and support them because I understand how close you can come to dying after a mesh implant.
Mesh complications in women can run a gamut of variations, with so many, a doctor can easily say it isn’t the mesh causing your illness. However once tests rule everything out and there is no answer they refuse to go further into it and leave women to deal with pain, erosion and even left to die. Words cannot describe how these complications really feel and you have to live it to understand.
One of my biggest fears is for older women who will be implanted with mesh and they have no clue that it could end their life much sooner than normal. I do know they will be the biggest targets by doctors for more than one reason and it is on this Third World Mesh Awareness Day that I want to address this and ask all the injured women to share this blog to save even one woman from going through the senseless agony of mesh complications.
You may wonder why I am so concerned for aging women. First you may not be aware of this but the range of age for the few women whose mesh injury cases actually went to trial does not reach 70’s or 80’s. I will give you a sampling of some of the women’s age went their cases to trial and if you have followed them, you may recognize their names.
Deborah Barba, 51, Christine Scott 53, Linda Gross 47, Donna Cisson 55, Linda Batiste 64, Jo Husky 52,
Martha Salazar 42.
Why else would I be so concerned for women from ages 65 on up? If you read a past blog I wrote about lawsuits, you should have noticed that they sort out lawsuits settlement by many things to give women less money. The older you are, the less money you will receive REGARDLESS of how severe your injuries are. Therefore the Manufacturers will send out their salesmen and try to sell to doctors who have older patients. It will cost them far LESS MONEY to settle cases of older women IF they live through their complications. It is a win-win for these unscrupulous companies and doctors who can charge MEDICARE thousands by doing surgeries on older women whether they need them or not, or whether the surgery will kill them.
First I want to tell you a true story. In 2005 I had a friend who was going through breast cancer treatment but lived far away from me. Her mother was age eighty at that time and she called to tell me her mother had had surgery for prolapse three days before and she died because her tissues were not strong enough for the surgery. I had no clue at that time about mesh implants and I was so sad for her daughter. I lost touch with my friend after a couple of years because something happened to her and her phone was off. I wondered about her breast cancer if it had returned. I was not in touch with her family. Since that time I have always wondered her mother’s surgery and if I had been able to have contacted her I would have asked her to go and get her mother’s records from that surgery. I often think of her and I do wonder what was put into her mother because mesh was already the gold standard of treatment in 2005 and many women already had lawsuits that settled in 2008.
Since I began this blog almost six years ago I have been contacted by older women and their daughters because they suffer after these surgeries. In the early days I used to have my email set up on this blog, but I finally removed it because I could not handle the volume of women who needed help from someone who would just listen to their terrible stories. During that time, one came in that really bothered me. It was from a daughter who had a ninety year old mother who was throwing up and was extremely ill after have a mesh implant because the infections were so bad. I did not know at that time that throwing up is a clear sign of sepsis and I have no doubt she did not last too long. The daughter did not know what to do and asked me for suggestions. Sadly other than keep her comfortable there was nothing anyone could do to help. She would not have been able to withstand another surgery and removing the mesh would have undoubtedly killed her anyway. I was very sad because I could do nothing but tell her to do all she could to keep the woman comfortable. I never heard back from her.
So with this in mind, I dug deep to find an article written to show you exactly why I fear for older women. It was written for the U.S. National Library of medicine. This article is so long and I have only included small parts and will give you the link to read it all.
Prolapse and Incontinence Surgery in the Older Woman February 2012.
Aging America The United States is experiencing a rapid growth in the geriatric age demographic. From the 2000 census data, there were 35 million individuals 65 years and older, representing 12.4% of the population. 1 Women aged 75 years and older comprised 51% of this group. Now you know why I am afraid for women of this age. The projected population for the year 2030 of those aged 65 and older is 71.5 million, representing 20% of the population.1 Furthermore, adults aged 85 and older, are one of the fastest growing segments of the older population.
Surgical Demand Over 200,000 inpatient and outpatient surgeries are performed yearly for the treatment of urinary incontinence (UI) and pelvic organ prolapse (POP) in women.2 The demand for care of pelvic floor disorders has been projected to increase significantly in the coming years. Increasing aging population will mean more devastation for older women who succumb to the serious side effects of mesh implants.
The lifetime risk of having surgery for either POP or UI up to the age of 80 years is 11.1%. Women who have undergone a procedure for UI or POP are at risk for recurrence. Yes this is true and doctors should leave well alone and treat women with pessaries, not put implants in them. Clark and colleagues showed that women who underwent primary surgery for POP or UI had a 12% re-operation rate, whereas women who had had previous pelvic floor surgery experienced a re-operation rate of 17% over a 5 year follow-up period.
Pelvic Floor Conditions Common pelvic floor disorders affecting the older woman include urinary incontinence (UI), pelvic organ prolapse (POP), and fecal incontinence (FI).
Urinary incontinence is a common condition in the older woman. Prevalence rates vary depending upon the definition. Liberal definitions of UI including “ever, any, or at least once in the past 12 months” show prevalence rates in women over 65 years to be 10–59%. What is significant about this article is because there are no real figures and 10% to 59% is a huge variance and this is not based on facts. Therefore if a woman goes to a doctor even if she does not have incontinence, it will be assumed she will have before too long and they will add a mesh sling when they fix a prolapse. That happened to me at age sixty-two. When a stricter definition of “daily” UI is used, the prevalence rates are 4–14% in the older woman. The impact of UI on quality of life in the older woman should not be underestimated.
The etiology of incontinence may be due to stress, urge, and overflow leakage, or mixed incontinence. Behavioral therapy with pelvic floor rehabilitation is an effective treatment for both stress and urge incontinence. Pessaries are also used for managing stress incontinence in older women. Surgery to improve stress urinary incontinence has been found to be safe and effective and will be discussed later. I know for a fact that this surgery is NOT safe and effective. Treatment of overflow incontinence is based on the etiology of the incomplete bladder emptying, such as obstruction or neurologic compromise.
The prevalence of POP defined as stage II prolapse or greater using the Pelvic Organ Prolapse Quantification (POPQ) examination in the general population was reported to be 37%; prevalence in an older population of women with a mean age of 68 years was 64.8%. Pelvic organ prolapse can be associated with urinary as well as bowel dysfunction. The etiology of POP is complex, involving potential injury to the many ligaments, muscles, connective tissue and innervation of the pelvis. POP is associated with several risk factors including age, parity, abdominal circumference and body mass index. Vaginal support defects as defined by DeLancey include Level I apical support defects (the cardinal-uterosacral ligament complex), Level II defects including cystocele, rectocele or paravaginal defects (a defect in vaginal support at the level of the arcus tendineous fascia pelvis), or a Level III defect, detachment of the perineal body. Once mesh is introduced as an implant to fix these women, it is shocking when they see so many side effects that causes their whole immune system to collapse.
Fecal incontinence is defined by involuntary loss of mucous, liquid or solid stool that is considered a social or hygienic problem. The prevalence of FI in community dwelling women over age 60 varies from 12 to 33% and is dependent on the definition used. Risk factors in women include chronic diarrhea, parity, UI, high body mass index, and previous anorectal surgery. I was married thirty five years and I have been around a lot of older people and the problems with fecal incontinence is often diet related. As we age, the body cannot tolerate certain foods and I watched this with my husband. This is why senior centers bring in food to serve that is very bland. My husband could not eat the things he loved during the time he was a younger man. This goes for men or women especially if they have gone through cancer treatment as did my husband.
It is common for women to be affected by more than one pelvic floor condition. Many older women have both UI and POP. Women with advanced POP may experience voiding dysfunction, which may be caused by urethral obstruction. Finally, older women are at risk for coexisting urinary and fecal incontinence. A thorough history will elucidate these associated symptoms.
Surgical approach to pelvic floor surgery.
Is reconstructive pelvic floor surgery safe in the older woman?
Older women undergoing elective pelvic floor surgery face risks similar to all patients undergoing elective general surgery. Pelvic floor surgery is considered an intermediate risk procedure with a perioperative mortality rate 5%. Like I said this is from the surgery, not from so many complications long term over a period of several years. Review of recent studies that examine outcomes of the older woman undergoing pelvic floor surgery show mortality rates from 0.0 to 4.1% and complication rates from 15.5 to 33.0% Complication rates vary and may be due to the heterogeneous definitions of complications throughout the studies. However, the majority of complications were related to urinary tract infections, febrile morbidity, and blood loss requiring transfusion. I do not know of ANY study done by ALL doctors who perform these surgeries. In fact doctors quickly rid themselves of patients who complain of complication. I could not give you the entire article because of the length, so here is the link
As I stated in the first part of this blog, I feel that manufacturers and doctors will target the older population for several reasons. First older women will often do as their doctor says without questions or research. They are of a generation who believes a doctor knows best. If they have complications, they are more likely to believe their doctor when he/she blames their complications on other health issues.
I tried hard to find true facts about what will happen if you die before your cases settles and no one seems to write about that. I have read that if someone dies after the surgery or before your case settles, there MAY be compensation for loved ones, but the key word is MAY. If you are implanted when in your seventies, the complications can cause severe problems and the mesh manufacturers can easily throw your case out by blaming something else, or you won’t live long enough to collect. Therefore it would be so much more cost effective to implant older women than young. The other thing to consider, often those who inherit are often willing to settle for far less than you would. Let’s face it the saying “Easy come, easy go” works perfect for lawsuits because only you can understand the severity of your injuries and what you would have done with a low offer.
I know that when women share this blog, there will be both men and women who have no idea what mesh is. Not knowing can make you a victim and your life will be doomed forever. This is why I continue to write and share what can happen to anyone, regardless of age or gender.
I know that the TV adverts about mesh brought in thousands of viewers all over this country. They only lasted a couple of years, but was enough for lawyers to get the attention of thousands of women. If you are reading this and don’t know what happened, 80.000 women filed suit against all the manufacturers. Most of the cases have not been completely settled and it still may take a few years. I think we all have the perception that filing a law suit will bring you justice about what happened to you, but alas that is not true. To help you understand the process I spent hours finding the right information and sharing it. Even if you are not injured by a mesh implant, knowledge is power. We can all be at the mercy of these giant pharmaceutical companies, so learn more by reading this. http://www.meshangels.com/how-much-will-you-get-from-a-lawsuit/
It is bad enough that mesh implants can cause so many health issues but to add fuel to fire, Boston Scientific has been accused of bringing in counterfeit mesh from China. Read this http://www.meshangels.com/update-on-counterfeit-mesh/
When these products came out, they were implanted in thousands of women who never even knew it happened including me. I am seeing a surge of women who were implants ten or more years ago and now their complications are now showing and very serious. Now doctors are getting away from the word mesh but I did research and found where now the manufacturers say exactly what the complications are including possible death. Read this blog http://www.meshangels.com/evaluating-the-new-mesh/
This does not just happen to the people who are injured. It happens to their families. Read what one man said about his wife’s terrible journey. http://www.meshangels.com/til-mesh-us-do-part/
You should also read an update about a young mother who died because of hernia mesh http://www.meshangels.com/hernia-mesh-dealing-with-loss/
You can read what else I wrote about mesh and the aging population by reading this. http://www.meshangels.com/old-dying-with-mesh/
This was last year’s mesh awareness day. I try to cover a different topic each year. http://www.meshangels.com/2nd-world-mesh-awareness-day/
This was the first one. I began this awareness day because all I read or heard about mesh injured women shocked and angered me. I felt that the mesh injured were ignored. http://www.meshangels.com/world-mesh-awareness-day/