When doctors told her they would implant pelvic mesh to treat her prolapsed bladder, Estelle Tasz didn’t think anything of it. Then 29, the mother of three put it out of her mind.
Years later when she started hemorrhaging, having pelvic, back and leg pains, she never suspected it was the mesh. She simply thought her body was going haywire.
Since then, the physical and emotional complications that followed for the Pittsburgh resident changed her life completely.
“I’m not the person I was,” Tasz told Drugwatch.com. “What I wouldn’t give to have that choice back.”
Just a week before joining us on the Drugwatch Podcast, Estelle underwent one of many mesh surgeries at Ronald Reagan UCLA Medical Center in California. Unfortunately, she went home because of a serious infection following the surgery. She said this particular infection is common for women with mesh. For her, this summer will be spent in operating rooms.
Nevertheless, she wanted to appear on the show to shine a light on the plight of women with mesh.
They have a lighthearted saying in the Tasz household that sums up the upheaval caused by the troublesome implant: “It’s a mesh.”
Mesh is linked to a number of serious complications including organ perforation, pelvic pain and inability to have intercourse. One of the first complications Estelle suffered from was hemorrhaging.
“I would hemorrhage just walking into a store,” Tasz said. “They would have to transfer me by ambulance because as you know, you are bleeding out. That happened about three times in one year.”
Then she developed large bladder stones about the “size of a small peach” that required surgery to remove. On top of that, she had painful, troublesome urinary tract infections constantly. After the first surgery to remove mesh, doctors discovered a surprising development.
“After the first mesh removal, they did discover mesh in my abdominal wall. That explained the nausea. It did also migrate through my vaginal wall. All the way up and all the way down.”
The mesh also invaded her bladder, leaving her unable to urinate without a catheter.
What bothers Tasz the most is the emotional toll it took on her family. It broke her heart not being able to be the mother she wanted to be to her youngest daughter, whom she adopted thinking she would be healed.
“I’m not the same mother as I was to my other children with my youngest,” she said. “I apologized to her birth mother. She said I just need to get well.”
In addition, Tasz’s first husband couldn’t take the strain of watching her constantly in pain. They eventually divorced, though he is still supportive of her and involved in their children’s lives. She remarried about two years ago, though she is unable to be intimate, a fact she shares openly.
“I would just like women to be educated and ask questions,” Tasz said. “And if you do have mesh, find the best possible surgeon that is honest and will help you,” she said.
Family members of women affected by mesh can help by being involved as well by asking questions and doing research. The Internet now has a wealth of information on the topic from information on what mesh is to the latest information on mesh lawsuits. For example, Drugwatch has a wealth of well-researched material about mesh, complications and information on brands and companies that manufacture the products.
Her advice to other women with mesh: “Don’t give up. I know women are being told that they’re crazy. I want to tell them that they are not. You know your body more than anybody.”
Welcome to another episode of Drugwatch Radio. I'm your host Michelle Llamas. On this show, my guest is Estelle Tasz. After the birth of her third child, she had mesh implanted for a mild pelvic organ prolapse. Her doctor told her it was the gold standard of care. She was just 29 years old. At the time, Estelle never knew that she would be faced with severe pain and countless other problems that would leave her in and out of hospitals and doctor's offices. She never knew that the gold standard, the piece of mesh implanted inside her, would leave her life changed forever. In fact for years, she never suspected. At the time of this interview, Estelle was calling me from UCLA in California, where she will undergo a series of surgeries that she hopes will give her back some of the life she lost. Here is a recorded telephone interview.
Welcome to the show, Estelle. We're very glad to have you with us because there are so many people that are under informed about mesh and all of the kinds of surgeries and complications that go with it, and I just want to thank you for being with us to spread the word and let people know.
Thank you for having me.
Let's start with the beginning. Tell us what led to the mesh being implanted.
The mesh was implanted in the year 2005 after my third child was born. My bladder had prolapsed and I was about 29 years old. I just remember the doctor that I've seen saying that it was a new kind of procedure, non-evasive, pretty easy. It was the gold standard of treatment; that's why you see it on a lot of signs. That's what their catchphrase was.
That's the only thing. And you know what, I didn't think about it again for years. It wasn't easy, and what I wouldn't do for that decision back.
Yeah, like you said, most women that go right to have the procedure done, the doctors will say that, "it's the cutting-edge technology now, it's the gold standard."
And who isn't gonna trust their doctor in all honesty? Yeah, you're not gonna question your doctor, especially if you've been to them before and you're comfortable with them. The sad thing is, and I've spoken to other women as well, is that the doctors themselves are misled a lot of the times by the procedure and by the device.
I think that would be the case, yeah.
Mmm, hmm. There's more literature on it now, but...which, thankfully is the case. But now you will have doctors that will still choose though to do it regardless.
Exactly. I just think there needs to be more education. There should have been another option, or several options.
Yeah. Now you know there are. There are, I think a couple doctors. Jerry Blavis, he's a doctor I've spoken with, and he favors using the actual tissue.
That's what I'm going to have done also. I have to have that done again, but they will be using my tissue.
It's like okay, if you could have done that in the beginning, right? [laughs]
I think Kegel exercises, I think just ... you know, having children at a young age and being smaller, your organs are prone to prolapse, but I just think that I didn't ask. I should have asked more questions, and that's what I should have done on my part so I would say that to women to always ask more questions, always.
Can you describe some of the complications that you began having as a result of the mesh?
Sure: hemorrhaging. I would hemorrhage just walking into a store; they'd have to transfer me by ambulance because as you know, you're bleeding out.
Oh my goodness, yeah.
That happened about three times in one year.
Oh, my goodness.
Then I started developing these huge bladder stones, not normal size. They were like a small peach or a small, you know. They actually had to go in and take those out. Then I started having, at least, I would say one UTI a month, so ... I never didn't have a bladder infection.
Oh, my. So that was like the normal for you then. "Oh, I have a bladder infection." [laughs]
Right. Fever, tiredness, you don't feel good. Yeah.
Mmm, hmm. And I mean, there was probably a lot of pain.
The pain came later like with my back and my legs and headaches, that kind of thing. Nausea. The first mesh removal, they did find mesh in my abdominal wall, which was causing the nausea.
So I did have that and it did migrate all the way down to my vaginal wall also, so all the way up and all the way down.
So it definitely moved around to places it was not supposed to be in. Were they concerned that it was damaging any of your organs or anything at that point?
It did damage, yeah. Perforated my bladder, and it took over my bladder pretty much. I remember in 2011 a huge surgery I had. It did some huge damage to that, and my right kidney has hydronephrosis. Just still getting infections.
This was all from the mesh?
Yes, I was unable to void for a couple years. I was usually self-cathing.
With self-cathing, you know, that's just another horrible thing.
It is! No, any kind of cathing. For people, that's a catheter for people that are listening that don't know.
After 2011, I was told that I was going to be better, and we decided to adopt a baby. In 2013, I started having symptoms again.
Wow, so it's been going on for years essentially. You've been dealing with all of this. And, of course you probably, like most women, in the beginning didn't really connect it to the mesh so much.
So it was just like "Oh, what is going on with me?"
I didn't hear the word "mesh" until 2011. I talked to a lot of women, you know, we do have the support groups, and I made a couple really good friendships, and same thing, they just never gave it another ... it's amazing, but I think because it was a permanent placement device that you just never would have thought it would have moved or would be causing pain in your bowels or your legs. You wouldn't think that.
I don't know if you know Christy Hammond, but we've spoken to her before, and she said the only way she found out was through a lawyer ad on TV, which is the funniest thing. She said, "Oh my goodness, there's all my symptoms."
She never even thought. And I think that's the worst part of it there because then you realize, this could have been prevented. People should know.
Right. It all could have been.
Yeah, definitely. ... So now you're talking a little bit there about how it affected your life with being a mom. Could you describe yourself before mesh and after mesh, like what were the differences in your life?
I'm definitely not the person, the mom, or the wife that I was, and that would include being a wife to my ex-husband. We did end up getting divorced. He dealt with it for about seven years. It's a strain and it's a lot on anybody, so we are still friends. We have two children together.
Oh, okay. Well I'm glad he's still there.
Oh, my gosh. He even flew to UCLA with me recently. I think it just worked out for the best possible way that it could have worked out. He just couldn't watch me in anymore pain. It's hard for men. For me and for men in general, so I think it not just affected me, but it changed both my ex-husband and my husband now and my children. None of us are who we were. Little Audrey doesn't really know any different, but she does now because I have to leave her for a month, and she knows I'm leaving again. She's three years old. I can't pick her up. I'm not allowed to lift. I'm not the same mom I am with her as I was my other ones because like I said, you know, the softball and the PTA, and I'm the cheerleader.
You were very involved. You were super-involved, yeah.
All the time. The biggest guilt I have with my kids is I guess adopting Audrey, promising a better life, and ... I apologized to her birth mom. [laughs] We have a wonderful relationship, and she just says "please just get better, and you've given Audrey a beautiful life."
So that's my biggest heartache.
Yeah. It's just a very, you know – aside from the physical side of things, it's a really emotional journey too. Because you've got all these things: your family, friends. How were they dealing with it when this happened to you?
I think you realize that you always question like – I read recently about a woman thought she had chosen –she had been given the worst family and the worst friends ever in her life and actually I think all of us think that because you seem to be alone a lot. But I think it's because you seem like you're okay. And with women it's so easy for us. Someone said recently to me, "You look so good." It's so easy for us to look good, to put on an outfit, but the inside is just a mess. It's a mess. And it's a mesh is what we say in our house.
It's a mesh, yeah. Uh-huh.
I think they just don't know what to do. I think there's no education. There's nothing being said on the TV. There's no books that you can get. There's a lot more literature online than there was 10 years ago. But you really have to want to learn about it and educate yourself, but I think that's up to us, mesh-women. And we do, to educate.
Yeah, you have been. And I think, yeah. And I was going say that all the stuff that's out there now is a lot because of what the mesh-women are doing. Speaking out, putting their blogs out, doing the...so definitely hats off to you. We try to do it as well but we do it through the mesh-women. We've spoken to so many women that share the story, and I think sharing a story makes so much more impact than just reading an encyclopedia article maybe or something like that. [laughs]
Well, we're real women and I think that the commercials on the TV have it misconstrued that it's changed the face of mesh. I would love to see the face of mesh change to real people and not the person on the TV. My next ultrasound, or my next translabial test or blood work or surgery...I need to have four surgeries this summer. Those are what's coming up. It's getting women help. I just...I want them to get help. I can't watch anymore women say, "I can't be turned away from the hospital." Or, "A doctor said this." The world needs to change. I went to UCLA and I remember the doctor saying "Estelle, pick your head up. Why is your head down?" and I said, "Oh my gosh, I never realized I was doing that until you said that." She said, "you didn't do anything wrong" and I said "thank you for that." I think, just being treated with integrity and with respect and as a patient will just change the whole view of mesh in women and men.
Yeah, which is a big deal too because I think there probably needs to be more resources or something on how to help husbands or significant others cope with it because they don't know what to do when that happens and it's hard to blame someone because there are no ... there's no precedent for a lot of this. There are some husband support groups, but I think the thing with guys is they're not really – it’s hard for them, to try and open up.
I think every man, every husband by definition, is taught to protect, and it's hard to protect when you can't see your adversary. The biggest enemy for women, like I've said, is looking okay and going to the hospital and saying "I just am sick" and they just look at you like "okay, you look good, you look good." And my husband is just begging for help of any kind, and I haven't been able to be intimate, I'm very open about that.
Yeah, that's a huge problem. That's huge.
Yeah. We've only been married two years. So, a year already. And from what the doctor's saying, I'm not sure that that will ever happen, but she's going to try. The mesh has eaten my tissues – most of my tissues on my pelvic floor and vaginal wall.
It's degraded. It's basically degraded all the tissue.
It's gone. It's like an open sore, they said.
Yeah. Yeah. And a lot of people have to remember that mesh shrinks, mesh erodes, it can cut your organs, mesh migrates; also the apparatuses on mesh can move after the mesh is removed. There are so many things that could happen that the doctors need to look at every single thing so that when you do have a removal you're not forgetting this piece or that piece or telling her that you got it all and in reality you didn't, because we need to know the truth.
Yeah. And of course we mentioned before, you brought up the fact that this is supposed to be a permanent implant. So when they come in and try to remove it, it's difficult, even for the most seasoned surgeons, 'cause this stuff is not designed to come out. So then you end up having multiple surgeries and I think you mentioned before how many you had. Can you tell us how many surgeries you've had since the beginning?
Twelve. And that's going back in to try and remove or for various different problems?
I've had three revisions. I've had, like I said, bladder stone removals. I've had several other small procedures, but the big ones, the last three, and then I'm looking at three more huge ones.
Oh goodness. So at UCLA this summer, basically?
Yes. Mmm, hmm. I started going there May 15.
And so this is going to be a continuous journey for a little bit here?
Since I live in Pittsburgh, it's the most difficult thing and it's hard to believe that this is America.
You went to New Jersey to do the Johnson & Johnson shareholder press conference there with a lot of the other women. What was that like for you to be there and how did it feel to be around all those other women?
I haven't felt normal in so long. It was probably the best day I've had in so many years, and I know that sounds funny, but we worked and we talked and we did things and it was like so amazing to be with people that you didn't have to explain. If you moved a certain way it was like "oh, that hurts?" or if you – you could tell, you could read their minds and their tears, their tears would just kind of come at moments when really there was silence or really ... But, we all just were family. It's weird how we connected without knowing each other, and as soon as we got there, it was just amazing, and I didn't want to leave. I was like, "This is my family."
You mentioned there were so many people there. Robert, who didn't have mesh himself, but of course there was his mother.
I actually didn't know anything about Robert. We got there and we immediately went to dinner, and Robert was sitting to the right of me, and I remember thinking, "Hmm, I wonder if he's the cameraman." He had that accent and he was just so nice and so at the end we all would start talking, and Robert and I kind of connected and he asked me before I left to come home...he asked me if I could talk about his mom, and I said I will always do that.
Tell us her story then, because he said tell her story for him, right?
Yes. His mom had mesh implanted. I do know she was a couple weeks away from finally getting to the pain clinic, but they had put her off for several months and Robert said he would go over to her house and she would be slumped over the bed and holding a pillow and just screaming into the pillow. Which we all know we've done that.
Yeah, and that's a graphic image. I'll stop you there because I think that people really need to understand how much pain this causes people because just to sit there and just not be able to do anything but scream into a pillow.
Right. He had no idea she was screaming because she was a good mom.
She probably didn't want to scare people with it.
No. But that day, he said it was different. And she said to him, "I'm in pain." And he said, “All I know how to do for her is to give her more medicine, more pain pills.” That's what they were doing for her.
So the next day, he had gone over and he found her in the backyard. She had killed herself.
She left a note for him, and when he talks about her, it's just, he just wants justice for his mom, I think. And he was in there with us ladies and he was – he stood there with her picture with the shareholders and just stood there. And if they didn't ask, we went to them.
So we wanted them to know that this was his mom and that she was in pain and that this didn't have to happen because no doctor would see her. And why is that? That is something we all want to change.
And it isn't just her, and that's the sad thing. There's been a lot of women, right?
There's many more. I know there was a woman last week that just died, not from killing herself but she died after mesh removal, and 12 hours and they took her into her room. She was okay, and then she passed away. And she was, I think 54.
Was it a complication of the surgery?
They don't know yet. They said they were going to look into that. But you know how mesh removal is. I think people think, "Oh, yay, it's a party. We're going to go in for mesh removal"
Oh yeah, no, it's not.
No, they’ve got to understand, our immune systems are a mess. Our bodies are a mess. I mean I got an infection in my heart in 2008. A lot of women have several other issues and we all want to connect the dots, and we need people to help us do that because you don't go from a 29-year-old mom to a mild heart attack with other issues and hemorrhaging and all these other things. Like, it doesn't happen.
No, and you were in perfect health before all this.
I don't know, it just kind of upsets me. I just want things to change and I don't know who is going to do that. If we're going to do that, if we need to do something different. All of us are just – I just know that I shouldn't have to leave my family for a month at a time to get to the doctor and I'm getting ready to go back again.
These aren't simple surgeries, and you've had several, so every time you have another surgery, you have risks.
Risk of infection and, just – these doctors are trying to take little pieces. And I think everybody thinks this mesh, I don't even know what they think of it. I know what mesh is, I've felt mesh. It's nothing like you would ... It feels like concrete after it comes out, but it's covered in my tissues. So that should tell you that for something to get covered in my tissue and it feels like concrete with sharp edges. It probably should have never went in a human. I don't know why it took a rocket scientist to say that, but I just don't know. I don't know. And I don't know how it's still going in women today. I don't.
The thing is they never really did real tests on it, and that was the issue to begin with. And they just thought "well, theoretically it should work." [laughs]
I don't think we even know the truth because I know that there's been documents. I don't know that we know everything. They might have tested it, but who knows?
Right, they might have destroyed that.
We just don't know, and that's what we want. We want those documents, we want the truth. The only thing I'm thankful for is I have my mesh to test so that maybe I can find out what I'm fighting.
That's true. You can find out what it's made of and all that.
Right. Because I know there've been other women that have tested positive for arsenic and heavy metals and pesticides and so we just want to know, what are we fighting and can you reverse it? We want people to help us live. We don't want to die like this. I want mesh to end with me because I won't watch my daughters die from mesh.
You don't want them to ever use it first of all.
No. And they know too, and even my 10-year-old, she knows. Mesh? No. [laughs] If we ever go somewhere and something happens – no mesh. [laughs]
It's sad how that kind of becomes a normal conversation in the family, this thing because it's so big that it's affected everyone and it's probably like a daily thing for your kids, for your husband. It's a part of your life, essentially.
My daughter was at Rite-Aid just a little bit ago and she sent me a picture of a mesh screen door.
[laughing] Oh no.
And I said, "That's funny, you know?" And she said "I can't believe that's in a screen door." I said "I can't believe it's in me."
No, and it's funny you should mention that screen door, because that's the same thing that Teresa Sawyer, who you met at the J&J shareholders thing, that's how she always talks about it. When she tries to describe it for other people, she's like, "It's like putting a piece of window screen in your body after you put it down in the grass and wait for years for the grass to grow in it and then try to take that piece of screen out of there without ripping the grass, without destroying everything."
Right. As a nurse, she knows the sterile piece of mesh that is going into the most unsterile place of a woman, so ...
They didn't study that either. They're like "wait a minute, it's not like you're putting it on your arm." [laughs] No. It's a complex area there, the pelvic area and all, it's complicated. You can't just –
Right, I just don't even think we'll – when we find out everything, I think it's going to be something that's going to change a lot of things. I think mesh will be talked about, but I don't think it will be in other humans. I would hope not.
Yeah, and when the hernia, the use for hernias as well. I think people don't talk about that either because they say it's supposed to be successful, but I'm like, "Well, there's been some guys that have come forward and said 'hey, I got a hernia mesh and I'm not doing so well.'"
It's just like you never know when it's going to happen. Mesh moves, it migrates. My mesh was melted into some of my tissue. Obviously, when you melt polypropylene, it shrinks, it causes degradation. These are words that I didn't use before.
Right. Now you know all about it, too much about it, probably.
Right. I know that it made its way all the way up to my abdominal wall, and now I have scar tissue, which is causing a lot of problems for me to eat foods. I think I take 22 medicines a day.
Yeah, that's another thing there, all of the drugs that you have to take because of this.
Right. And these women that can't get the things that they need. I just don't know how to change it, and I sit here and think and my husband is like, "Estelle, you can't change the world." It's not the world that needs change, it's just a few, you know, just a few in general. I'm hoping. [laughs]
Well I think just doing what you're doing and telling people the truth, what's really happening. I think that always makes a big difference. Again, I thank you for speaking out, because it's such a taboo subject and it's difficult for people to talk about. So when you come forward and you're brave, and I told this to Teresa too, and Christy and...you're so brave for doing this because you're just putting it out there and it's so personal and you're telling everyone your story.
Just, if you can tell them to get educated and any woman that says they changed mesh, it's the new mesh. We have a thing in our little group: mesh is mesh.
It's still mesh. They haven't changed it. I don't care if they change the wording. I wouldn't stick anything with the word mesh anywhere near...even my little puppy over here. So I would just like women to be educated and don't...ask questions, 'cause we've been taught not to ask questions to doctors, to respect...but I think, that is respecting them. And if you do have mesh, find the best possible surgeon that will help you and that is honest and get it out.
Right, your advice to other women that might be struggling with it, maybe family members too of people. What would you say to them? What would you say to family members of women that are suffering with this stuff?
Go with them. Ask questions. Get answers. Write it down. Do some research and take that with you because a lot of doctors I know they hate Google...I know.
[laughing] Yeah, they do.
There isn't just Google. You can go on any of these places that have been there since all of this started with tons of things to ask. Print it out, take it with you. Don't be okay with "it might be" because it's your life, and I think immediately after I got the mesh out at UCLA, immediately I felt improvement, immediately. The pain in one of my areas was gone, and I said to someone "is that real?" and she said "that's what all the women say." It's just one little area that you'll notice, and I was like "oh my God, that feels wonderful." Because you're so used to it. I know there's only a couple good doctors that I found. Do fundraisers. Do anything you can to get there. And once you're there, things will improve. And then deal with the bigger things. Get the mesh out of you.
And just keep going, that's the thing, right? Just don't give up on this. Just keep going.
I had a lot of women after I spoke out, they were ready to just end it...and that's so hard for me, because I can't be there in every different state, and I'm not a spokesperson. But I had a man come up to me, and it was so moving because I had my daughters with me at UCLA, and they flew down to see me, and we did get to go for a walk, and this man from across the street, he was with an older lady, and they were holding hands and...I saw them talking and he ran across the street, and he said, "You, Estelle?" And I said, "Yes!" He said, "You know me. You know me," and I said "no, I don't think so, I'm from Pittsburgh" and he said "no, you speak for my wife. You angel." And me and my daughters, we all started crying, and he said "is it okay if I hug you?" and I said "of course" and he said "thank you for speaking for my wife" and I said," I speak for everybody if you can't speak." He said "she can't speak, she's sick." But she went to UCLA, she was getting help, so I was so thankful.
Wow, that's amazing to see someone stop you in the street and say thank you.
Across the country, right, right. So it's getting out there. Women, don't give up. Just keep asking questions. Don't just pass it off as something else, it's not. We all know what mesh is doing.
There are also a bunch of different brands of this stuff too, a bunch of different companies are involved so...I think Johnson & Johnson has been a lot in the news lately but, there's several other companies, so I also want women to know that it's not just...if you don't have a Johnson & Johnson implant, don't worry about it. It's all these products.
Yeah, they were getting discouraged, but when we spoke out at the shareholder meeting, we didn't speak for just Johnson & Johnson. We were speaking for one, because we want the documents...that scares a lot of women. And two, because they haven't been vocal like some of the other companies. They haven't been doing some of the things. But they're human too. They can't not...they saw us for the first time.
Yeah, they did. I think some of them didn't even know, right? I think some of the shareholders didn't even know what was going on.
Right, right. There was people crying and I think until they see that it's her and it's her and it's her. We're all different but we're all the same. We're all made the same inside, and we all have lives and we all have children, or some of us don't, but you know, we all have lives, and that's important.
Yeah, yeah, you're mothers, wives, sisters, aunts – everything.
I know women are being told that they're crazy and other things. And I just want to tell them that they're not. Don't ever doubt yourself. You know your body more than anybody and I am...that's one of my major regrets, because I know my body, and now I know. I'm not feeling well now. I was supposed to fly out too. I did go to the doctor and I do have an infection so I can't leave yet. You know when you're not feeling well, you know when something's not right.
Online there's a lot of support groups too now. There's some on Facebook, right?
There are a couple of like Teresa, she's got her website – TVT-No! – is hers and there's a few. So like you were saying...
There's a bunch. It's just good to hear. It's not always negative. They'll put pictures up. When I went to California, I got so many well wishes and phone calls and cards and they actually did a donation and raised money and that was within two days. So there's good people out there, and I think with the mesh women, we kind of stick together, even when we're butting heads.
[laughs] Because you know, people are people.
Women are women. You know how women are, we're hard-headed and we have one opinion but we're learning and it's just taught us a lot and I'm gonna keep going until things change.
On behalf of us here, thanks so much for coming on the show and talking to us and again, appreciate you just sharing your experience because, I can never say this enough, when people share what's going on with them, it makes such a big impact, so I'm sure that everybody listening is going to get such good help from what you've said, even if it's just to keep going, even if that just helps them keep going.
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