The Hidden Illness
On April 3rd this year I wrote a blog called Mesh is an Illness. I wrote it because there are hundreds of thousands of women worldwide who suffer from mesh complications and we all feel no one is REALLY listening and the media doesn’t care. Many times women do not know how to explain what they are dealing with, to family, friends and employers so they just quietly try to deal with what has been thrown at them, without any help.
In a perfect world they wouldn’t need to explain why they are sick. If they had cancer there would be so much sympathy and empathy from loved ones and friends and no explanation would be necessary. In fact, there would be offerings to go for treatments and tests and everyone would muster together to help save a woman’s life.
Then why doesn’t it happen for women dealing with serious mesh complications? To begin with, women have to work to keep insurance to get the help they need and therefore because they work, they won’t be believed that they suffer. The lifelong expense of mesh complications is horrific and to get real treatment and help we often travel thousands of miles from home. This is costly and difficult to do when you have so much pain. There are not any agencies to help mesh injured women and how do you tell a male boss at work you need weeks or months off work because of a female problem.
There is also another reason people won’t believe women. Most are in a lawsuit against the manufacturers of these implants and because of this, people often think they are milking the system and there is nothing wrong with them. Sad indeed. If they only realized what these pelvic surgeries do to many women, they would open their eyes and see a whole different picture.
In the past when a woman needed time off work for a female issue, it usually meant something like a hysterectomy surgery which was always downplayed by employers. Sad because to have your reproductive organs removed means a whole new set of symptoms you have to learn how to live with. It was always believed that she would take a couple of months off work and be up and running in no time. However, mesh changed EVERYTHING. My own complications began immediately after the surgery and from the moment of implant I could never urinate again and still cannot do this properly up to this day, six and a half years later. If you could only know what that does not only to the body, but also to the mind, you would have empathy for any woman who lives like this.
We take going to the bathroom as a normal part of being a human being. When something holds your bladder so tight and it cannot go up and down as it fills and empties, it can have disastrous results on your whole body. It causes kidney damage, bladder spasms, constant infections that antibiotics won’t cure and anxiety when you cannot go.
How do you talk about this to family and friends? It is not easy especially when you are stared at as if you have two heads or walked away from when you try to talk about it. How do you talk about doing self-cath in a bathroom at work? How do you talk about carrying extra clothes in case of a urine or fecal accident? How do you talk about fecal incontinence? If is horrifying to say the least and most women prefer to remain silent on these subjects, due to embarrassment.
The immune system issues are even harder to see although far less embarrassing. How do you explain why your hair is falling out or teeth rotting? How do you explain the loss of energy and the lack of desire to attend family or public gatherings? If we had cancer, we would not have to explain any of these things because family and friends understand the consequences of cancer. For the most part, we would be helped and cared for without asking and agencies are often there to help a woman deal with these things and the hospitals sympathize with cancer patients.
When you have mesh complications it is the exact opposite. Doctors want to get rid of you from their offices and won’t treat you. Some hospital E.R.’s have been notorious for treating women as drug addicts and not believing their pain. This is the journey for many, many mesh injured women.
So many women have told me their children do not believe they have a serious illness. Yes, a serious illness. When an implant upsets your entire internal system everything goes wrong and you get sick with many disorders.
To understand what happens to some women, I want you to read a comment left on this blog a couple of weeks ago because there are so many problems with both medical devices and products used in pelvic surgeries and women don’t know what the culprit of their pain is or how to get well. Life becomes a three ring circus when you are dealing with pelvic mesh complications, just as this woman aptly puts it. Here is part of her journey.
“Greetings all. I am a 42-year-old woman that had a hysterectomy (removing my uterus and tubes) I still have my ovaries. This was March of 2013. 1 week later I had leg pain and numbness. I was referred for a sonogram to make sure that I did not have a blood clot in my leg. 2 weeks later severe abdominal pain. I was seen in the ER. They performed a CT scan and I was diagnosed with B.V. 1 month later a sudden severe tooth abscess that blacked my eye and I had a swollen face. The abscess would not respond to oral antibiotics. For the next 2 months 2 more tooth abscesses. All treated by antibiotic injection. Lower abdominal pain the entire time.
Still complaining of pain my OBGYN that preformed the hysterectomy, she tells me that she can no longer treat me and to see my primary care for pain management. Now in the 9th month my primary care refuses pain meds and tells me that she is adding my name to a narcotic refusal list in the state of Illinois, because “I should not be in pain” and because “I had been seen at 2 different ERs for pain” Now in the 10th month I receive a certified letter from my primary care provider that “I am being dropped. he will no longer see me, I need to find another Dr.”
For months after I was seen in the ER probably 10 times Ct scans, Dilaudid did not even help. The only thing that occasionally worked was Torodol injections. All along for months on end …..repeated B.V. treated by creams, gels, prescriptions. To then need to treat the yeast overgrowth…..A three ring circus. Now in 2015 I have a new symptoms hair loss and insomnia. No answers I took the next step and found an OBGYN in a larger city. The new OBGYN on the second visit March 2016 sd that my records were not the same with what she found and ordered a MRI STAT! (all because of my ongoing pain, due to this Interceed TC7 or Gynecare Interceed) I was electrocuted in the machine. They called a code white and rushed me from radiology to the ER. June 2016, now I am having body spasms and aches. Some days I wake up and can’t turn my neck to back out of my driveway. I seek the help of a chiropractor maybe I need an alignment???? He took x-rays and informed me that my pain was autoimmune. Now suddenly my thyroid is enlarged???
I am writing to share. When you know that something is not right with your body seek outside help. I have dull pain in my lower left abdomen. This is where I felt the electrocution. I feel as if I am about to deliver a full term baby at any given time, the pressure that I feel is unreal. I have constant cramping and sharp pains between my inner thighs and vagina it feels if my legs are going to come apart from my body. Incontinence I must stop going and coming from the office. I have a 70-mile commute. Pain dull pressure in some areas, shooting pain in other areas, burning in my hip area and outer thighs. Sex???? NOT! But the constant B.V. and yeast is killing me embarrassing and never ending. Has anyone experienced this from an Interceed barrier mesh?
PS. I am now scheduled to see a UROGYNE on August 2 2016.”
I read her comment and then I thought “Where do I begin?” I did approve and answer it with a link to another blog I wrote about Interceed and I will give you that link at the bottom of this blog.
I feel so bad for this woman because once you are on this roller coaster your life becomes going to doctors, taking tests and trying to figure out why you are so sick with continuous pain and no one including the implanting doctor believes you.
She states she was diagnosed with BV which is bacterial vaginosis and I have also covered that subject with the help of another woman who had this problem. I did not personally deal with this, so I listen to others and then do the research. I will also give you a link to that blog at the bottom of this one.
Leg pain and numbness. I could write a book on this one because this is one of the symptoms that happens to women either soon after surgery or it can be a few years later. I know this side effect personally and I wound up disabled without any cure. I will also give you another link to that blog.
Electrocuted? OMG this woman has been through far too much and I can tell she is running out of strength to do something to save her life. I have no idea where she lives, but she needs all the help she can get from her own friends and family and this hospital needs to be reported.
When she wrote of autoimmune and an enlarged thyroid, I was not shocked or surprised. In fact I have heard this from other women, over and over again. Tooth abscesses are often associated with the immune system breaking down, along with hair loss. So you may wonder why women implanted with mesh slings are often very, very ill and if the implant remains in their body, it will slowly kill them. So this will help you learn more.
Biofilms can kill.
“In American hospitals alone, healthcare-associated infections (i.e., nosocomial infections) account for an estimated 1.7 million infections and 99,000 associated deaths each year. Of these infections: 32 % of all healthcare-associated infection are urinary tract infections; 22 percent are surgical site infections; 15 percent are pneumonia (lung infections); and 14 percent are bloodstream infections” said in a June 2007 report that every year some 3 million people in European Union countries catch an infectious disease associated with healthcare and that around 50,000 die as a result.”
As these headlines infer, biofilms cause a significant amount of all human microbial infections. Nosocomial (hospital acquired) infections are the fourth leading cause of death in the U.S. with 2 million cases annually (or ~10% of American hospital patients) leading to more than $5 billion in added medical cost per annum. About 60–70% of nosocomial infections are associated with some type of implanted medical device. It is estimated that over 5 million medical devices or implants are used per annum in the U.S. alone. Microbial infections have been observed on most, if not all, such devices, including: prosthetic heart valves, orthopedic implants, intravascular catheters, artificial hearts, left ventricular assist devices, cardiac pacemakers, vascular prostheses, cerebrospinal fluid shunts, urinary catheters, ocular prostheses and contact lenses, and intrauterine contraceptive devices. Worldwide production of biomedical devices and tissue engineering-related materials is a $180 billion per year industry and expanding rapidly. Regardless of the sophistication of the biomedical implant (catheters versus a three-dimensional stem cell-containing polymer scaffold), all medical devices or tissue engineering constructs are susceptible to microbial colonization and infection
Upon adhesion to a surface (inanimate material or tissue), replicating adherent bacteria can secrete mostly insoluble gelatinous exopolymers, forming a three-dimensional cell: polymer matrix known as a biofilm. From a medical perspective, both commensal and pathogenic microorganisms form biofilm-like conglomerates that are either associated with the epithelial or endothelial lining; embedded in the lung, intestinal or vaginal mucus layer; attached to the teeth or medical implant surfaces, or formed intracellularly. Biofilm formation and persistence has profound implications for the patient, because microorganisms growing as biofilms are significantly less susceptible to antibiotics and host defenses than are planktonic forms of the same microorganisms. Many biofilm infections are notoriously difficult to resolve and they commonly manifest as chronic or recurrent infections. Biofilm infections constitute a number of clinical challenges, including diseases involving uncultivable species, chronic inflammation, impaired wound healing, rapidly acquired antibiotic resistance, and the spread of infectious emboli.
This woman’s name is Faith and I am sure by now she is losing all faith in the medical industry. So what can she do to try to save her health and her life? There is no simple and easy ‘in your neighborhood’ and ‘fast track’ answer. She will somehow have to find the money to travel far from home and remain off of work for a long time to try to get a proper diagnosis of her implant complications. This means she will need all the help she can get from her close loved ones, family and friends.
What do I suggest she do? Muster all the help she can get from anyone who she is close to who will listen to her. If they won’t listen or don’t care, then ask people at a church to help raise funds to go out to UCLA for a proper diagnosis and removal of the implant. If she has to go for a consult first then sell whatever she can to pay cash for it. Without it no one will ever believe her. Then make sure she has purchased the right type of insurance that UCLA will take for surgery. She can call to ask which one they take. Be sure it is a PPO insurance so that she can choose
where she goes.
I know what a tall order this is and a scary thing to think about because I have lived through it. But I also know that if she doesn’t take steps and begin the process she will slowly die from all that is happening to her. This is time for her family and her friends to open their hearts and do all they can to get her the help she needs.
Faith, it took me two weeks to get to this and I am sorry it took so long. I don’t know where you live, but I did send you an email. I have no idea if you misspelled it and it did not get to you, but I want you to know I truly do care. I am giving you blog links to learn more and to inform the hospital what happened to you. There is an organization who will take over and do something about this and believe me, the hospital will then be at your beck and call.
Faith this blog will take you to how you can report your injury to the correct people. Please do it. Every time we don’t report things like this, another person gets hurt. http://www.meshangels.com/report-medical-abuse/
I hope she will read this blog and realize there is something she can do for BV. http://www.meshangels.com/constant-yeast-vaginitis/
Interceed may or may not be a contributing factor and you can read about it on this blog. http://www.meshangels.com/what-is-interceed/
No one can say what will help you with leg pain and there isn’t a cure for many of us, but sometimes we try things to help instead of taking pain medications. This blog will tell you more. http://www.meshangels.com/mesh-leg-pain/
There are thousands of women just like this one and If you are a friend of a loved one of an injured woman, please read this blog because she needs and deserves your support. http://www.meshangels.com/mesh-is-an-illness/
Is there a miracle to help this woman? Sadly, there isn’t. Without the support and help of friends and family her life is doomed. You may not know anything about mesh complications or understand how bad it can get, but you can always learn and help a woman who needs your strength, encouragement and your understanding. I can only tell you that mesh complications can be as bad or sometimes far worse than cancer. That is why I keep raising awareness and sharing my own and other women’s stories.