Prolene Mesh = Auto-Immune Diseases
Hope

Northport, NY

#66 Jun 12, 2013
Sick of it wrote:
I had hernia mesh implanted in 2006 . I had ongoing pain at the site of my hysterectomy scar, and they diagnosed the hernia. I have been in constant agonizing pain ever since. In addition to the pain ruining my life I've also had severe fatigue, drowsiness, trouble breathing, shaking, loss of balance and joint and bone pain and stiffness, fever and on and on. I can't work, I can't take care of my grand kids, I can't walk without a walker, I spent my younger kids terrible teens incapacitated with pain and only functioned enough to go to work and then crawl into bed. I can't even talk about what happened to my marriage without breaking down
. I've been test for rheumatoid arthritis, with some markers. Lots of inflamation markers, low lymphocytes, Negative Ana, negative for ms or als. I did test positive for hhv6 which most people have as infants, but can reactivate and cause problems. The medicine they put me on for that caused even more problems. Before the initial surgery I went to the dr maybe once every four or five years for something like a sprained ankle or strep throat. I was never super active, but was healthy am
Able to care for my family and work. Since then I've had to try a zillion different pain meds and follow up surgeries and shots and so on. And the last year or two I've been to the drs constantly, and of course they act like its all in my head and they've never ever heard of all thes problems from surgery. There has been other severe stress going on that I think has contributed, but if I wasn't already so worn down and I'll I think I would be in better shape..
Fortunately I have an appointment with dr. Raz this summer. I can't wait to get this mesh out. Even if it makes my life just marginally better it might keep me from just giving up completely, maybe.
Thank you so much for posting all you have been through as I know it is not easy. I am so glad to hear that you have an appointment to see Dr. Raz. I don't know him personally but applaud any doctor who can sucessfully remove the mesh as I found out the hard way it is not made to be removed. I can tell you first hand that having the mesh removed was the single best thing I have ever done for myself in my whole life and in doing have also saved my life. I got so sick so fast it was frightening.
Hopefully you can gain strength in knowing that there is hope (no pun intended). Best Wishes to you and thank you again for sharing.
Sick of it

Aptos, CA

#67 Jun 13, 2013
Thank you for addressing this t optic ! The more people find out about all the possible problems the better. I'm so glad to hear that getting the mesh out saved you. I'm of course terrified of more surgery, so it's reassuring to hear something positive
Hope

Northport, NY

#68 Jun 13, 2013
Sick of it wrote:
Thank you for addressing this t optic ! The more people find out about all the possible problems the better. I'm so glad to hear that getting the mesh out saved you. I'm of course terrified of more surgery, so it's reassuring to hear something positive
For me it was a life or death situation. I looked for the most talented Uro-Gynecologist in my area and then put my life in my doctors and more importantly God's hand. Frankly I was at the point where I had no choice. I could not let my family watch me die. Now I believe they won't have too. Best wishes and remember you are not only having the surgery for yourself but for your family as well. Prayers that you are okay. Visit TVT-No!.com as there are lots of women there who have had great success with Dr. Raz.
So confused

West Covina, CA

#69 Jul 22, 2013
Hello to all who posted on this thread. I've been searching to see if any other mesh patients have had similar issues like mine. I had a total hysterectomy with Gynecare TVT Mesh and until recently did I start putting my problems together. I currently have been suffering with back/hip problems which is affecting my mobility. I'm 49 but walk and move like any 80 year old. I had my surgery in Dec 2009 and immediately noticed sitting caused me to stiffen upon standing. I had asthma but it has never been as bad as since the surgery? Been to chiropractor after chiropractor but till now the pain was somewhat controlled. I'm currently unemployed and desperately need to work but often wonder how I can get through hours of sitting! I have no insurance but I'm not well and no there's something very wrong with me? I'm scared at the outcome AND terrible feeling of BEING physically LIMITED. I've had horrible pains in my thighs and legs, days where getting up is taxing..
I appreciate finding this site and reading your threads, I don't feel so alone now. It can be very depressing and overwhelming.
Lucy

Marathon, FL

#70 Jul 30, 2013
Hope wrote:
<quoted text>
OMG. I am so glad you came to this thread. I had my mesh removed in Sept. 2012 and am praying between the explant combined with taking my Hydroxychlorquine my Lupus will finally go into remission. I know in my heart that the medicine never had a chance to work while the mesh was in.
I'd love the chance to speak with you, but not sure how to do that as I see I already have one hater on the site who is either clueless or working for big pharm.
Thanks for joining. i am sure there are many of us. Hopefully this thread helps bring us all together.
Hope :)
. This not
Working. Who removed your mesh
Lucy

Marathon, FL

#71 Jul 30, 2013
Could some please post. Names of. Doctors who removed mesh. And success stories. Thanks
Pheba

Auxvasse, MO

#72 Aug 25, 2013
Where to begin. I had auto-immune issues back in 2004 after cancer surgery. Surgery successful. Medication had auto-immune in full remission by 2006.
Hernia mesh put in in 2009. Prolene Proceed mesh. Mesh burned constantly for 3 months. Settled down, but constant left groin pain. I had groin pain prior to hernia insert, reason for insert. But pain became worse after insert, not better. Come to find out, there was no hernia. Mesh was put in anyway.
Went back to surgeon who put in mesh. He told me "I had been watching too many Tv commercials". begged him to do CT scan. Did not show anything except what was termed "post surgical changes". Don't have a clue what that means.
Developed autoimmune type illness. ANA RA negative. But, body wide enthesitis (tendonitis), joint pain, short of breath. Extreme fatigue and weakness. Trouble focusing. Digestive problems.
High CRP and SED. There are auto-immune diseases, notably the spondyloarthropathies that are sero-negative. I am guessing that is what I have.
Refuse to go on Methotrexate. Am doing antibiotic protocol.

Sent CT to Dr. Petersen in Vegas. He wrote letter that sounded like I had post mesh syndrome. Need mesh out. Just don't have the money. Am saving money to go have it done. Dr. Petersen is cash only.

To Hopeless. Have you tried getting surgical report from hospital instead of Dr. I went directly to hospital. Eerily enough, as I sat in records office waiting for the records, one of the clerks whispered: "it's another one for Dr.****". Guess I am not the only one.

Plans are to have mesh removed when I am old enough to cash in my only IRA, i.e., life savings. That is next winter. Problem is, I don't know what shape I will be in by then.

In my case I believe not only leeching of chemicals is a problem with mesh, but bacteria in mesh. Bacteria can be a powerful trigger for several auto-immune diseases.

As far as the troller is concerned; your sarcasm disqualifies any statement you make. Any one of these women could be your mother, or a sister. Your lack of empathy and respect is apalling.
Troll is an apt name.
Pheba.
Cher

Brunswick, OH

#74 Sep 29, 2013
I cant recall if I posted this. I had mesh put in in 2010 I had erosion in July 2011 and hopefully total removal 7/2013. I went with a Dr that was trained by Raz.Dr Vasvada in Cleve oh I now have a bladder that can't be fixed lymphedema and scleroderma...my atty is not excepting the fact of immune issues. My RA said once inflicted you got it for life. So now new medicines (expensive with health risk for other complications. I do compression pumps 2 x a day just so my feet will allow me to walk. I have not had anything but flip flops on since this crap started. I have a spot on ea lung 9causing xrays multiple times a yr. The last three yrs I have been so ill and tired. My face is generally red...my skin is very dry and I have major dental appt with scleroderma you loose your teeth from dry mouth...I am angry. I can't read the newspaper or books just the print on the computer.
Hope

Northport, NY

#75 Sep 30, 2013
Cher wrote:
I cant recall if I posted this. I had mesh put in in 2010 I had erosion in July 2011 and hopefully total removal 7/2013. I went with a Dr that was trained by Raz.Dr Vasvada in Cleve oh I now have a bladder that can't be fixed lymphedema and scleroderma...my atty is not excepting the fact of immune issues. My RA said once inflicted you got it for life. So now new medicines (expensive with health risk for other complications. I do compression pumps 2 x a day just so my feet will allow me to walk. I have not had anything but flip flops on since this crap started. I have a spot on ea lung 9causing xrays multiple times a yr. The last three yrs I have been so ill and tired. My face is generally red...my skin is very dry and I have major dental appt with scleroderma you loose your teeth from dry mouth...I am angry. I can't read the newspaper or books just the print on the computer.
I am so sorry to hear how poorly you are doing and pray that we all recover/ It is the waiting that is so hard. Try to enjoy the good days when you have them.
Faith

Charlottesville, VA

#76 Oct 1, 2013
I was researching the problems with the mesh to see if my symptoms matched it and I found this page. As soon as I read some of the stories I started crying. This sounds just like me. I had a hysterectomy and the mini arc for my bladder done at the same time. After that I had a rough couple months. It felt like what ever could go wrong went wrong. I was diagnosed a couple of months later with celiac dz. All the doctors said I would feel like a new person but they were totally wrong. I have went down hill. I am 35 years old and I feel like I have a body of a 90 year old. I have so much pain everyday. Everything hurts on my body. I have been diagnosed with a connective tissue disorder. I also stay so tired all the time. Before I had this surgery I was walking/running 5 miles n doing two workout videos every day and now I have a hard time even getting up in the mornings bc of all the pain. I was wanting to know if the mini arc is included with all the ones that is causing all the trouble? I don't know what to do any more. All I want is my life back. Any help would be greatly appreciated.
Brenda Wertz

Mount Vernon, OH

#77 Nov 4, 2013
HopePagano wrote:
Well someone had to do it...My name is Hope Pagano for those of you who do not know me.
I had the TVT Gynecare Mesh procedure done in May of 2011. By June of that same year I got the flu and couldn't get rid of it. Like any average person I would get a cold or flu but once in a while but this time was different. I would run fevers which was very rare as my temperature had always run subnormal at 97.8 degrees. Rapidly over the following 6 months my health began to rapidity decline čalthough I must say my incontinence was 95% cured, I felt horrible. My other symptoms came on like gang busters and within a year I was diagnosed with SLE Lupus, and auto-immune disease that usually takes years to diagnose.
I was having many of the symptoms the other women have described under the Topix, "lawsuit filed Gynecare TVT bladder suspension tape (Prolene Mesh)", and was able to gather information there that I believed saved my life. Although the site is and continues to be extremely informative, and a source of me support to Mesh victims from all walks of life, the fact remains, If you read the Complaint filed against the "Johnson & Johnson Gynecare Lawsuits" you will notice it does not include biochemical adverse reactions to the Mesh itself. Many of the auto-immune diseases normally healthy people like me developed after having the Prolene Mesh implanted in our bodies are incurable and can become lethal in some cases.
I am starting this sight not to take away from the original site, but to develop a source of information and support for those people who like me are suffering from these silent killers, known as auto-Immune diseases. It is my sincere hope (no pun intended) that by gathering enough people like me and information supporting the connection between the Prolene Mesh and Auto-Immune we together can be heard and hopefully stop this Toxic madness.
I invite all who are interested in supporting this specific "Topix" of Prolene Mesh = Auto-Immune disease to join my plight to prove what I already know to be true. The Mesh is toxic and can cause life threatening diseases to develop in otherwise healthy people.
The only rules I hope to invoke are these:
1) We stay on Topic, which is proving the connection between the Prolene Mesh and the development of auto-immune disease.
2) That we put this principles above personalities in hope's of raising awareness and gathering indisputable evidence of the connection between Prolene Mesh and the Development of Auto-Immune disease.
3) Lastly, that no one person is greater than the group. This site is designed to help get the Mesh off the market once and for all and that self promotion or self serving ulterior motives will not be tolerated.
That is it folks. As far as I am concerned the more people who take an interest in this subject the better. Researcher, Doctors, Lawyers, Lawmakers and most importantly Suffers are welcome and encouraged to join me and help make a difference in uncovering the dirty little (big) secret that
PROLENE MESH ='s AUTO-IMMUNE DISEASES.
Thank you all in advance for your support and input.
May God Bless this site and all whom visit it,
Hope


My name is Brenda Wertz I also suffer from mesh repair this last surgery was a triple hernia repair. I still have pain and discomfort somedays. I can't find a lawyer to take my case. I know I have a good case, I have been thru a lot in the last 3 years. I feel blotted and fat all the time, also had pig part put inside stomach so my insides don't come out i have extra fat and stomach that I shouldn't have. So please if you or someone knows a lawyer who can help pleade have them email me at tiggress43@yahoo.com. These mesh surgeries need to stop. I almost died on last one. Thank you Brenda Wertz
Hope Pagano

Northport, NY

#78 Nov 4, 2013
So confused wrote:
Hello to all who posted on this thread. I've been searching to see if any other mesh patients have had similar issues like mine. I had a total hysterectomy with Gynecare TVT Mesh and until recently did I start putting my problems together. I currently have been suffering with back/hip problems which is affecting my mobility. I'm 49 but walk and move like any 80 year old. I had my surgery in Dec 2009 and immediately noticed sitting caused me to stiffen upon standing. I had asthma but it has never been as bad as since the surgery? Been to chiropractor after chiropractor but till now the pain was somewhat controlled. I'm currently unemployed and desperately need to work but often wonder how I can get through hours of sitting! I have no insurance but I'm not well and no there's something very wrong with me? I'm scared at the outcome AND terrible feeling of BEING physically LIMITED. I've had horrible pains in my thighs and legs, days where getting up is taxing..
I appreciate finding this site and reading your threads, I don't feel so alone now. It can be very depressing and overwhelming.
Lucy I hope things are getting better for you, although time is not usually a good thing for women with mesh in their body. I encourage you to seek health insurance through the new government healthcare plan.
You should qualify if you can't find work, but I am not an expert in this.
Take care of yourself, and thanks for sharing.
Hope Pagano

Northport, NY

#79 Nov 4, 2013
Faith wrote:
I was researching the problems with the mesh to see if my symptoms matched it and I found this page. As soon as I read some of the stories I started crying. This sounds just like me. I had a hysterectomy and the mini arc for my bladder done at the same time. After that I had a rough couple months. It felt like what ever could go wrong went wrong. I was diagnosed a couple of months later with celiac dz. All the doctors said I would feel like a new person but they were totally wrong. I have went down hill. I am 35 years old and I feel like I have a body of a 90 year old. I have so much pain everyday. Everything hurts on my body. I have been diagnosed with a connective tissue disorder. I also stay so tired all the time. Before I had this surgery I was walking/running 5 miles n doing two workout videos every day and now I have a hard time even getting up in the mornings bc of all the pain. I was wanting to know if the mini arc is included with all the ones that is causing all the trouble? I don't know what to do any more. All I want is my life back. Any help would be greatly appreciated.
Mesh is Mesh, unfortunately. They all degrade and I know for a fact it has made me gravely ill.You should see if you can find a surgeon in your area that has experience removing the Mesh as it is easier said than done.
Good luck, Iiknow everyone here can use it.
Lucy

Key West, FL

#80 Nov 9, 2013
Please where are the doctors who remove this mesh
Hope Pagano

Northport, NY

#81 Nov 9, 2013
Lucy wrote:
Please where are the doctors who remove this mesh
Lucy do you have hernia or vaginal mesh? I ask because there are different doctors for each kind of mesh. At least that is what my experience has been. Also go to www.medicalmeshnews.com and TVT-No!.com both sites have a ton of information.
The most talked about Doctors have been Dr.Raz in California, Dr. Veronikis in the midwest, Dr. Twiss in Tucson. Dr. Liu did my surgery in NY but also operates out of Tennesse. I hope this helps, but the only doctor I have had a personal experience with is Dr. Liu and he was terrific.
Good Luck.
Lucy

Key West, FL

#82 Nov 9, 2013
Bladder and uretha lift, eroded tru vagina wall, attempt removed now in PAIN. And get run around. From original doctor. Thank you
Karen

Trenton, FL

#83 Dec 23, 2013
i had the vaginal mesh and a bladder sling put in in July of 2009. I had an emergency appendectopy followed by gallbladder removal within 2 months of surgery. For the next 3 years I had abdoninal pains that were undiagnosed. The, in Oct. of 2012 I was diagnosed with polymyalgia rheumatica, an autoimmune disease, which, after a year o f steroids and other medication, I am still fighting.I have gained 65 pounds nd can hardly walk.
HopePagano wrote:
Well someone had to do it...My name is Hope Pagano for those of you who do not know me.
I had the TVT Gynecare Mesh procedure done in May of 2011. By June of that same year I got the flu and couldn't get rid of it. Like any average person I would get a cold or flu but once in a while but this time was different. I would run fevers which was very rare as my temperature had always run subnormal at 97.8 degrees. Rapidly over the following 6 months my health began to rapidity decline although I must say my incontinence was 95% cured, I felt horrible. My other symptoms came on like gang busters and within a year I was diagnosed with SLE Lupus, and auto-immune disease that usually takes years to diagnose.
I was having many of the symptoms the other women have described under the Topix, "lawsuit filed Gynecare TVT bladder suspension tape (Prolene Mesh)", and was able to gather information there that I believed saved my life. Although the site is and continues to be extremely informative, and a source of me support to Mesh victims from all walks of life, the fact remains, If you read the Complaint filed against the "Johnson & Johnson Gynecare Lawsuits" you will notice it does not include biochemical adverse reactions to the Mesh itself. Many of the auto-immune diseases normally healthy people like me developed after having the Prolene Mesh implanted in our bodies are incurable and can become lethal in some cases.
I am starting this sight not to take away from the original site, but to develop a source of information and support for those people who like me are suffering from these silent killers, known as auto-Immune diseases. It is my sincere hope (no pun intended) that by gathering enough people like me and information supporting the connection between the Prolene Mesh and Auto-Immune we together can be heard and hopefully stop this Toxic madness.
I invite all who are interested in supporting this specific "Topix" of Prolene Mesh = Auto-Immune disease to join my plight to prove what I already know to be true. The Mesh is toxic and can cause life threatening diseases to develop in otherwise healthy people.
The only rules I hope to invoke are these:
1) We stay on Topic, which is proving the connection between the Prolene Mesh and the development of auto-immune disease.
2) That we put this principles above personalities in hope's of raising awareness and gathering indisputable evidence of the connection between Prolene Mesh and the Development of Auto-Immune disease.
3) Lastly, that no one person is greater than the group. This site is designed to help get the Mesh off the market once and for all and that self promotion or self serving ulterior motives will not be tolerated.
That is it folks. As far as I am concerned the more people who take an interest in this subject the better. Researcher, Doctors, Lawyers, Lawmakers and most importantly Suffers are welcome and encouraged to join me and help make a difference in uncovering the dirty little (big) secret that
PROLENE MESH ='s AUTO-IMMUNE DISEASES.
Thank you all in advance for your support and input.
May God Bless this site and all whom visit it,
Hope
Karin

Kansas City, MO

#84 Dec 24, 2013
Prolene wrote:
<quoted text>
for academic reasons...and also I think you're probably a sue happy lawyer who is fullofshit.
I have just met Hope and she most definitely is not a "sue happy lawyer who is fullofshit" she is an amazing courageous lady who has been damaged by mesh. Severely damaged. I can surely relate to that as I also had gynecare implants. Hope has been through ALOT and her suffering continues. And yet she has the courage to speak up and by doing so she helps ALL of us afflicted with foreign body reactions, autoimmune diseases and systemic issues due to mesh. Hats off to you Hope. Keep up the good fight.
Karin

Kansas City, MO

#85 Dec 24, 2013
Lucy wrote:
Could some please post. Names of. Doctors who removed mesh. And success stories. Thanks
My success story is due to Dr Dionysios Veronikis of St Louis, MO. I had both the Gynecare Total Prolift and TVT sling and two partials before Dr V removed all the mesh. I am only five days postop but already have had some AMAZING and FAST improvement. Had neurological, endocrine, so many systemic issues and some are just GONE! My surgical site hurts of course but my severe fatigue is replaced with amazing energy. Areas that hurt terribly before are tremendously better and that horrible severe level ten unrelenting back pain appears to be GONE! Too soon to tell if it will continue to be so but all signs show rapid improvement. I have hope again. A chance to LIVE again
Barb

Wickenburg, AZ

#86 Dec 26, 2013
Hi Hope,
I have just been diagnosed with lupus also after having pelvic mesh implanted. I have lost over 30 pounds because I can't eat without an allergic reaction and I have extreme contact allergies too. I can't use soap, shampoo, hand lotion, etc. My hair has been falling out. I have terrible migraine headaches. I practically live on bendadryl to keep my immune system under control. I want the mesh out. Do you know of any doctors in Arizona that can remove it?
Thank you and God bless you.
Barb

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