Prolene Mesh = Auto-Immune Diseases

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“Get the" Mesh" out of here!!”

Since: Oct 12

Huntington

#1 Dec 20, 2012
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
mesh experience

Madisonville, KY

#2 Dec 20, 2012
Hope, You were easy to find and I am so glad you started this forum. The tests were confirmed today. Positive. I will tell my story soon. I am still in shock that I have lupus! I have been talking to you and doctors about it and it was really looking like I may have it but to actually be told that I do....
Hope

Centerport, NY

#4 Dec 21, 2012
mesh experience wrote:
Hope, You were easy to find and I am so glad you started this forum. The tests were confirmed today. Positive. I will tell my story soon. I am still in shock that I have lupus! I have been talking to you and doctors about it and it was really looking like I may have it but to actually be told that I do....
I am so sorry. I can tell you I know how you feel and understand what you are going through. Just know I am here for you and you for me and us for the next gal.
Maybe if we all band together and get the truth about the toxicity of the Mesh out into the open we can help others avoid the grim reality we are forced to face.
Please call me, as we have much to discuss.
Hope
Prolene

Richmond, KY

#5 Dec 21, 2012
Hope wrote:
<quoted text>
I am so sorry. I can tell you I know how you feel and understand what you are going through. Just know I am here for you and you for me and us for the next gal.
Maybe if we all band together and get the truth about the toxicity of the Mesh out into the open we can help others avoid the grim reality we are forced to face.
Please call me, as we have much to discuss.
Hope
Could you cite a scientific paper that provides evidence that prolene elicits an autoimmune response? I know prolene is used often as both a suture and a mesh for repairs of abdominal wall hernias and have never heard of either of these causing autoimmune disorders. Can you provide evidence for a direct causal link and what if any immunological studies have been done that conclusively establishes this link?
Hope

Centerport, NY

#6 Dec 22, 2012
Prolene wrote:
<quoted text>
Could you cite a scientific paper that provides evidence that prolene elicits an autoimmune response? I know prolene is used often as both a suture and a mesh for repairs of abdominal wall hernias and have never heard of either of these causing autoimmune disorders. Can you provide evidence for a direct causal link and what if any immunological studies have been done that conclusively establishes this link?
Why May I ask are you interested?
Prolene

Richmond, KY

#7 Dec 22, 2012
Hope wrote:
<quoted text>
Why May I ask are you interested?
for academic reasons...and also I think you're probably a sue happy lawyer who is fullofshit.
Mimimarie

Altadena, CA

#8 Dec 26, 2012
Hope,
I don't think you are a "sue happy Lawyer"...My gut tells me no, but I have been wrong before. Hopefully posting on this new thread will help develop a source of information for people like us.....
I am the 'poster child" for mesh related autoimmune disease. I have been battling illness and autoimmune sickness and other painful illness's since this horrible mesh was placed in my body, then was officially diagnosed with Lupus in Oct of 2011. My mesh was ex-planted a few months back, with Dr. Raz performing the surgery and he made it clear to me that my "autoimmune" was caused from the mesh leaching into my blood stream..his thoughts being that it could be cured from the ex-plant of the mesh, but I'm still being treated for Lupus and my Rhuematologist says it is not curable! So now I live my life not knowing what my future holds for me. My horrible pelvic pain and low back pain has diminished somewhat but I still am plagued with fatigue, joint pain, stomach problems, swelling, and all the other wonderful gifts that Lupus gives us. I am hoping that someday we will all find out the truth behind all of this and we can get some sort of answers, if not closure.
Hope

Centerport, NY

#9 Dec 26, 2012
Prolene wrote:
<quoted text>
for academic reasons...and also I think you're probably a sue happy lawyer who is fullofshit.
You obviously have no idea who I am or can relate to what people like myself are going through.
No one just looks into this stuff for academic reasons. You want to talk about being full of S**t. The only reason to be on this site is if you are suffering from an adverse reaction or know someone suffering from an adverse reaction to surgical mesh.
If not do us all a favor and go vent somewhere else. I am too sick to mess with the likes of you.
Go back to whoever sent you and tell them they already have the scientific evidence of what they are doing to people.
This is merely a place for suffers to support each other.
Now why don't you go find another site or start your own.
Please leave mine alone.
Thank you,
Hope
Hope

Centerport, NY

#10 Dec 26, 2012
Mimimarie wrote:
Hope,
I don't think you are a "sue happy Lawyer"...My gut tells me no, but I have been wrong before. Hopefully posting on this new thread will help develop a source of information for people like us.....
I am the 'poster child" for mesh related autoimmune disease. I have been battling illness and autoimmune sickness and other painful illness's since this horrible mesh was placed in my body, then was officially diagnosed with Lupus in Oct of 2011. My mesh was ex-planted a few months back, with Dr. Raz performing the surgery and he made it clear to me that my "autoimmune" was caused from the mesh leaching into my blood stream..his thoughts being that it could be cured from the ex-plant of the mesh, but I'm still being treated for Lupus and my Rhuematologist says it is not curable! So now I live my life not knowing what my future holds for me. My horrible pelvic pain and low back pain has diminished somewhat but I still am plagued with fatigue, joint pain, stomach problems, swelling, and all the other wonderful gifts that Lupus gives us. I am hoping that someday we will all find out the truth behind all of this and we can get some sort of answers, if not closure.
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 :)
Jane Akre

Jacksonville, FL

#11 Jan 1, 2013
Epidemiologically if 100 people come forward with mesh implants AND auto immune disease, isn't this something that should be investigated?

Or is it just a good coincidence?

Why is industry held to a innocent until proven guilty standard? Shouldn't the burden of proof be on the entity that is making profit to make sure their product is safe and effective?

Hope's story:
http://meshmedicaldevicenewsdesk.com/patient-...
Teresa

Victoria, Canada

#12 Jan 1, 2013
Holy smokes, this sounds to close to home. I had a sling put in Feb 2011 and havent worked since. I had the occaisonal cold or flu but I just kept getting sicker and sicker. By april when my unemployment benefits ran out I was really getting scared. my hair was falling out, I had gained almost 30 pounds and looked like crap. Sleeping all the time. My GP ran some thyroid tests, and found out my thyroid antibodies were at 4000 instead of 0. so off to the endrocrinologist. She confirmed that I had hashimoto's, autoimmune thyroiditis. So now we wait for thyroid to burn itsself out as it does with this disease. The joint pain kept getting worse and worse, I was so tired a just getting so depressed. The endo sent me to a rhuemotologist who diagnosed Rhuemetoid Ra, fibre myalgia and Oseteoarthritis. Well thats bad enough , but I start the medicine, plaquinel which did a number on my liver. So they took me off the medicine to give my liver a rest. two weeks later I wake up with what I thought were spider bites on my legs. Oh they hurt so bad. by the the third day these bites had moved into the soles of my feet. my husband dragged me to the rhueme and he looked at it and said, thats erythema nodosum! He has only seen it a few times, but it is a sign of another auto disease called sarcoidosis. He sent me for blood test and a chest xray. Sure enough the xray showed a shadown on my lung, but the blood test were positive for this sarcoid as well. He says dont panic we will do a ct scan of lungs to clarify what the spot it. It cam back and my lungs are full of these nodules. I have never smoked might I ad. Now they have figured out that the sarcoid has gone into my liver and that is why the scores are reading so high. I like to look on the positive but I am scared as to what 2013 will bring. All I know is that I never had any of this before feb 24/2011 and now???? I am going to find out this week what kind of mesh was used. I had a huge cystocele that was repaired at the same time as bladder. I had a hysterectomy at 25 after my twins, so everything was falling out. My bladder repair was not very successful, about 10 percent better, but the pain from the cystocele was gone the minute I woke up. I have to go in to have the scar tissue removed from my vagina in a few weeks, but now they tell me because of my lungs and liver they think they will cancel it. Sex? what was that. they pain is so bad at the end of my vagina, its impossible to have intercourse. So I guess this is my new years rant, but I dont know where to go from here. thanks for listening everyone and have a happy new year/
Hope

Centerport, NY

#13 Jan 1, 2013
Teresa wrote:
Holy smokes, this sounds to close to home. I had a sling put in Feb 2011 and havent worked since. I had the occaisonal cold or flu but I just kept getting sicker and sicker. By april when my unemployment benefits ran out I was really getting scared. my hair was falling out, I had gained almost 30 pounds and looked like crap. Sleeping all the time. My GP ran some thyroid tests, and found out my thyroid antibodies were at 4000 instead of 0. so off to the endrocrinologist. She confirmed that I had hashimoto's, autoimmune thyroiditis. So now we wait for thyroid to burn itsself out as it does with this disease. The joint pain kept getting worse and worse, I was so tired a just getting so depressed. The endo sent me to a rhuemotologist who diagnosed Rhuemetoid Ra, fibre myalgia and Oseteoarthritis. Well thats bad enough , but I start the medicine, plaquinel which did a number on my liver. So they took me off the medicine to give my liver a rest. two weeks later I wake up with what I thought were spider bites on my legs. Oh they hurt so bad. by the the third day these bites had moved into the soles of my feet. my husband dragged me to the rhueme and he looked at it and said, thats erythema nodosum! He has only seen it a few times, but it is a sign of another auto disease called sarcoidosis. He sent me for blood test and a chest xray. Sure enough the xray showed a shadown on my lung, but the blood test were positive for this sarcoid as well. He says dont panic we will do a ct scan of lungs to clarify what the spot it. It cam back and my lungs are full of these nodules. I have never smoked might I ad. Now they have figured out that the sarcoid has gone into my liver and that is why the scores are reading so high. I like to look on the positive but I am scared as to what 2013 will bring. All I know is that I never had any of this before feb 24/2011 and now???? I am going to find out this week what kind of mesh was used. I had a huge cystocele that was repaired at the same time as bladder. I had a hysterectomy at 25 after my twins, so everything was falling out. My bladder repair was not very successful, about 10 percent better, but the pain from the cystocele was gone the minute I woke up. I have to go in to have the scar tissue removed from my vagina in a few weeks, but now they tell me because of my lungs and liver they think they will cancel it. Sex? what was that. they pain is so bad at the end of my vagina, its impossible to have intercourse. So I guess this is my new years rant, but I dont know where to go from here. thanks for listening everyone and have a happy new year/
You poor thing. I can't believe the suffering you have been through in less than 2 years. I hate to ask but do you still have the Mesh implant in your body? I know this is going to sound crazy but if you haven't gotten it out yet, you should consider doing so. I could not believe how fast my disease was progressing and thank God everyday that my sister linked the mesh and my illness together and that I had the support of others and the guts to get the mesh out right away. I know that having this procedure saved my life as everyone noticed the difference in me within 1 week of the explant surgery. I am not a doctor but can tell you I felt like a real life miracle happened in my life as a result of getting that crap out of my body. Thank God my doctors listened to me and were willingto help me.
I will be praying for you in the New Year! Hang in there.
Hope :)
Hope

Centerport, NY

#14 Jan 1, 2013
Jane Akre wrote:
Epidemiologically if 100 people come forward with mesh implants AND auto immune disease, isn't this something that should be investigated?
Or is it just a good coincidence?
Why is industry held to a innocent until proven guilty standard? Shouldn't the burden of proof be on the entity that is making profit to make sure their product is safe and effective?
Hope's story:
http://meshmedicaldevicenewsdesk.com/patient-...
Thank you Jane for taking the time to help tell my Story. I sure hope it helps others to know they are sick not crazy. Will re-read in the morning to make sure the story is accurate as I know it was a long interview.
God Bless you Jane and Thank you.
Teresa

Victoria, Canada

#15 Jan 1, 2013
Thanks for the kind words, I do have the mesh still in me. I am seeing the doctor on Friday to try to start the process of having it removed. I had talk to him before and he told me there are very few surgeons who can remove it. I have hear of one doctor in Vancouver who will do a partial removal but Canada is lacking quite badly in the mesh removal experts. I know this is a stupid question, but what happens to the bladder or cystocele that has been repaired with the mesh , once they remove it. Here's to continued health for you and all other mesh patients. It sure is frustrating. but talking to others has helped. I met a lady on facebook who has put me in touch with so many amazing sources of information. Thanks again Ruth, so glad that I had you to give me this information
mesh experience

Madisonville, KY

#16 Jan 3, 2013
Dear Hope, I have finally been able to read your story and it is just so unreal how the symptoms are so fast and furious! I feel so much pain for you! You are right about the Vitamin D. The nurse was asking my meds and I told her I was taking it and she said "we have it in your notes to prescribe that today, why are you taking it?" I just gave her a look and said, "a friend told me to." I am not impressed with this office but the doctor seems to know her stuff. I am so very depressed. I slept most of the Holiday and just could not make myself get up and make the trip back home. It wasn't like my daughter would let me anyway. I am still so down and in shock. I am very blessed to have such a wonderful supportive family, I think I would not be able to deal with this othewise. I am going back home today for the sake of my birds. They have a room where they are allowed to fly free. They have to stay contained at my daughters. I raise finches and try to raise parakeets. I have a solid white canary and a cockatiel that I rescued. Luckily we were able to sell all the young ones before we left in December so there weren't "too" many to travel. Sorry, just rambling. I can't stay on topic at all. It just seems to get worse and worse. I also totally forget what i am even saying. Reading your story tells me it is not an uncommon issue of auto immune.
May The Lord Bless each and everyone of us this year and may all the victims of mesh and related auto immune disorders get the help we need to be able to live our lives.
Hope

Centerport, NY

#18 Jan 3, 2013
Teresa wrote:
Thanks for the kind words, I do have the mesh still in me. I am seeing the doctor on Friday to try to start the process of having it removed. I had talk to him before and he told me there are very few surgeons who can remove it. I have hear of one doctor in Vancouver who will do a partial removal but Canada is lacking quite badly in the mesh removal experts. I know this is a stupid question, but what happens to the bladder or cystocele that has been repaired with the mesh , once they remove it. Here's to continued health for you and all other mesh patients. It sure is frustrating. but talking to others has helped. I met a lady on facebook who has put me in touch with so many amazing sources of information. Thanks again Ruth, so glad that I had you to give me this information
I am not sure about how health care works in Canada, but if you can get your insurance to cover a surgery in the USA I know my doctor in New York told me he was able to get all of the Mesh out including the anchors in one shot. As far as what they do instead of the Mesh. The answer is the same way they repaired bladders long before this toxic mesh hit the market. I had a burch procedure which I was originally told is an outdated procedure. What they do is stich the bladder up. I was not able to get the hammock using my own fibers as my urthera was to damaged by the mesh removal. Personally if I had to pee in a bag for the rest of my life it would have been worth it just to get my general health back and ability to think back.
Feel free to email me at hpagano@hopefundinggroup.com if you'd like to speak privately.
Good Luck. We are all in this together.
Hope
Hope

Centerport, NY

#19 Jan 3, 2013
mesh experience wrote:
Dear Hope, I have finally been able to read your story and it is just so unreal how the symptoms are so fast and furious! I feel so much pain for you! You are right about the Vitamin D. The nurse was asking my meds and I told her I was taking it and she said "we have it in your notes to prescribe that today, why are you taking it?" I just gave her a look and said, "a friend told me to." I am not impressed with this office but the doctor seems to know her stuff. I am so very depressed. I slept most of the Holiday and just could not make myself get up and make the trip back home. It wasn't like my daughter would let me anyway. I am still so down and in shock. I am very blessed to have such a wonderful supportive family, I think I would not be able to deal with this othewise. I am going back home today for the sake of my birds. They have a room where they are allowed to fly free. They have to stay contained at my daughters. I raise finches and try to raise parakeets. I have a solid white canary and a cockatiel that I rescued. Luckily we were able to sell all the young ones before we left in December so there weren't "too" many to travel. Sorry, just rambling. I can't stay on topic at all. It just seems to get worse and worse. I also totally forget what i am even saying. Reading your story tells me it is not an uncommon issue of auto immune.
May The Lord Bless each and everyone of us this year and may all the victims of mesh and related auto immune disorders get the help we need to be able to live our lives.
I am glad you are here and that you are seeking the support of Doctors, family and friends. If you wish to talk sometime email me your number and I will give you a call. Sometimes it just helps to talk to other people who can relate to what you are going through just to remind you that you are in fact sick and not nuts. My email is hpagano@hopefundinggroup.com. Feel free to use it. I run my own small business in between being sick so I might not be able to call you back right away, but I will call if you need a friend who is walking in similar steps to your own.
Try not to be depressed, and if it continues tell your doctor how you are feeling to see if they can help.
Hanging in there. Did they prescribe you medicine for your Lupus? do you still have the Mesh impant or was it removed?
Prolene

Richmond, KY

#20 Jan 3, 2013
Hope wrote:
<quoted text>
You obviously have no idea who I am or can relate to what people like myself are going through.
No one just looks into this stuff for academic reasons. You want to talk about being full of S**t. The only reason to be on this site is if you are suffering from an adverse reaction or know someone suffering from an adverse reaction to surgical mesh.
If not do us all a favor and go vent somewhere else. I am too sick to mess with the likes of you.
Go back to whoever sent you and tell them they already have the scientific evidence of what they are doing to people.
This is merely a place for suffers to support each other.
Now why don't you go find another site or start your own.
Please leave mine alone.
Thank you,
Hope
I'd like to see the evidence and how they conclusively proved a causal link between the mesh and autoimmune disease. There are many etiologies for autoimmune diseases and to ascribe one specific cause is difficult to prove scientifically. Vaccines are also purported to cause autoimmune disorders and the link to specific immunoglobulins and autoantibodies has been identified so how do you know that the autoimmune disease was caused by the mesh instead of vaccines, which everyone has had in their lifetime? I don't quite understand why you are taking offense to a scientific question. It could be because maybe you are the one full of it.
Prolene

Richmond, KY

#21 Jan 3, 2013
Jane Akre wrote:
Epidemiologically if 100 people come forward with mesh implants AND auto immune disease, isn't this something that should be investigated?
Or is it just a good coincidence?
it could have been coincidentally caused by vaccines or any one of a multitude of evironmental toxic exposure.
Hopeful in SF

Corte Madera, CA

#22 Jan 3, 2013
Hope,
I am sitting in my bed (where I spend all of my time when I am not trying to work). I am crying.
I had a partial hysterectomy and a bladder sling implanted - you guessed it, Prolene Mesh. This occurred in June 2012.
Why am I crying? It's taken me forever to find this site and people with my symptoms - I truly thought I had gone off the deep end.
Since the surgery I have been hospitalized for an eColi infection picked up during the surgery, I was told I had a severe vitamin D deficiency, I have been sick continuously since the surgery, I have had two spinal injection series ( 13 injections and counting) because I got to the point where I couldn't walk and was diagnosed with spinal stenosis, I have seen more Dr's in these last 7 months than in my entire life. Recently, after trying to work again, I end the day with a severe headache, fever, and so sleepy I want to pull the car over and shut my eyes. Around two months ago I noticed that my feet were turning blue, a couple of weeks ago my fingers started turning blue, there are blotchy veiny reddish purple spots all over me - its as if my veins can be seen through my skin.
I have searched for the combination of symptoms with pelvic organ prolapse and bladder sling and finally found you - you have no idea how grateful I am at this moment. I am finally seeing a surgeon who is supposed to be an expert in pelvic prolapse, mesh implants, etc. I have documented everything, even took photos of hands and feet. Would it be outrageous to ask for specific testing? Any advice or words of guidance you can offer would be appreciated - although, as I said, already grateful. Thank you so much - I will post again after Tuesday

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