On previous episodes of Drugwatch Radio, I had the opportunity to talk to some inspiring people whose lives were turned upside down by the complications of transvaginal mesh. When I talked to Teresa and David Sawyer and Christy Hammond, they shared their courageous stories with me.
Raw and sometimes shocking, their experiences paint an intimate picture of how mesh can affect lives. But their stories also let others know that there is life after mesh.
On this week’s episode, we catch up with Teresa, David and Christy. They share the next chapter in their stories, which began with betrayal but end with hope and inspiration – a testament to the strength of the human spirit.
Teresa Sawyer went into surgery to remove a cyst and came out with a sling that was supposed to prevent stress urinary incontinence (SUI). She was told that her Johnson & Johnson Ethicon TVT sling was the “gold standard.” Instead, it became her worst nightmare. Teresa said the mesh forced her to accept a “new normal” that was filled with pain and wondering what new complications she would suffer.
She has since had several surgeries to remove the mesh, but permanent damage was already done to the sensitive pelvic muscles and tissues. Her husband, David, remained by her side, helping her fight for her life. Now, the couple crusades against manufacturers of mesh, and through TVT-NO!, their mesh survivor foundation, they help others to find their new normal and begin the path of healing.
Recently, Teresa had the opportunity to join the Corporate Action Network (CAN) on a trip to New Jersey to take the fight to Johnson & Johnson’s doorstep. At the J&J shareholders’ meeting, Teresa stood with her fellow mesh survivors and their families to speak to the hundreds of shareholders.
She even got the chance to shake J&J CEO Alex Gorsky’s hand.
The Sawyers say that joining forces with CAN will not only send a message to mesh manufacturers, but it will also get them to settle tens of thousands of lawsuits pending in state and federal courts. They hope the money will help women get the medical help they desperately need.
“As hard as it may be, you have to forgive the people that did this to you,” Teresa said, addressing other women affected by mesh. “As long as you don’t forgive them, the anger, hatred and hurt is going to make you sicker. I was never able to move forward until I was able to forgive Alex Gorsky and J&J.”
Last time, Christy Hammond told Drugwatch that she didn’t even know what mesh was – even after it was implanted inside her during a hysterectomy. The doctor said it would give her “bladder a lift.”
When the pain came, she had no idea it was the net-like piece of synthetic plastic made by C.R. Bard inside her causing her permanent damage.
Christy said that what finally clued her in to the mesh was an attorney’s ad on TV. The symptoms listed on the commercial matched what she was suffering. Finally, she was able to try and get some help.
“They (Bard) admitted that it was never supposed to be used inside the human body,” Christy said. “But they did it anyway.”
Christy recently took her own foundation, SurvivingMESH, to the next level by beginning fundraising and starting a blog. She says that the blog is her way of healing as well as sharing her most private struggles with mesh. In her own words, she also chronicled her journey on Drugwatch.
She says to other women, “Never give up hope …. never succumb. Keep at it, keep learning and keep warning others of the harmful side effects of surgical mesh.”
Last modified: May 18, 2017
On previous episodes, I spoke to some very courageous people whose lives were forever changed by transvaginal mesh implants – Teresa Sawyer and her husband, David, and Christy Hammond.
Teresa found herself suffering from severe complications after she received Johnson & Johnson’s Ethicon TVT sling. Together, she and David fought back by founding TVT-No!, an advocacy group for mesh survivors aimed at supporting people affected by mesh.
Christy Hammond was in a similar situation when she received a mesh sling from C.R. Bard. Christy founded her advocacy group – Surviving Mesh – as a way to begin her healing and help others.
On this episode, I chat with Teresa, David and Christy to find out what new projects they are undertaking and how they are dealing with the continuous pain and complication of living with mesh.
Teresa and David are on first, and they join me from Ohio by telephone. The second half of the show features Christy, and she joins me by telephone from Florida.
Michelle: Since last we talked, everybody knew what you were going through, Teresa, with the symptoms that you were still having, the physical issues. It’s been a little while, so we just wanted to check in with you. How are things going? Obviously, you’re still having issues, but what kind of things can you report are still going on with that?
Teresa: I’m still dealing with the pelvic pain. I’ve pretty much adjusted to the fact that I have a new normal, and I just move forward as well as I can. I’m always seeking cures – natural cures. I’m always looking for fixes that can be used without using the pharmaceuticals. I have found a few. I’m fighting my way back.
Michelle: With all the stuff you’re doing – both you and David – with fighting for getting this stuff out there, and letting everybody know about what J&J is doing – that kind of gives you a little bit more fuel to the fire there, right, to keep going?
Teresa: Oh, tremendously.
Michelle: Let’s jump right into the big news, with the Johnson & Johnson shareholder meeting. I wanted to ask you both what the experience was like.
Teresa: David stayed home.
Michelle: So he held the fort down?
Teresa: He held the fort down. I did travel out to New Jersey, and I had the opportunity through the Corporate Action Network – we are joining forces with them – to speak to the Johnson & Johnson shareholders, and to look Alex Gorski right in the eye and to tell him, “You hurt me. You hurt my friends.”
Michelle: Let’s talk about this video real quick. Let me back up. When I saw the video that the Corporate Action Network (CAN) put together, where he said that 60 percent was good enough, that you don’t have to have 100 percent safe products before you release them. What was it like, looking at this guy who said that?
Teresa: You know, in some ways, it was a relief to me. I was not intimidated. I was able to walk up to Alex Gorsky and talk to him one-on-one, very briefly, and he was apologetic in a sense, even though I believe that was a facade. I shook his hand. I told him, “You hurt me, and you hurt other women, and you need to stop selling this mesh.”
It was not intimidating. I thought, when I stood up in front of 1,600 people, that I would get the heart racing and I’d be really scared, but I was calm. I was very, very calm. That was the first time I have ever talked in front of a group without feeling I’m going to fall over. I kept on telling the people I was with – I tell my group, our organization ladies – that “God has this,” and I kept on saying that throughout the whole day. And I really feel that he did have this, because I wasn’t scared. They showed a spotlight right on me, and I said what I had to say. Very exciting.
Michelle: You were there at the meeting? And they introduced you?
Teresa: At the end of the meeting, they open it for Q&A. The gentleman who was in there mentioned that we would have questions and comments, so we were able to stand up – myself and two other women. One woman directed her speech mainly to the stockholders, in mentioning that by keeping the mesh on the market, at the very low profit that it is – it’s not a very profitable product – is putting a bad name on the Johnson & Johnson company.
Mine was more at a personal level, of what he had done to me, and standing up for the women, nationally and internationally – and telling him that he needs to stop hurting us. I also put my question, “What happened to the documents? And what’s in the documents that were destroyed?” When they chose to destroy the documents, there’s hidden things in there that we need to know.
Michelle: They played it off as just an accident of sorts, you know? Oh, they didn’t hear us when we said, “Don’t destroy things.” That was kind of interesting. I’m sure nobody believes that.
Teresa: The thing is, when I asked them that, I mentioned to them that I was concerned that it may have the listing of the chemicals of the makeup of mesh, because we’re falling ill. I asked them, “What did you do with these documents?” And I asked shareholders to investigate this, and they did reply with the fact that it was a technical error and there was nothing important in the documents. Well, what they may consider important and what we consider important are two different things.
Michelle: Exactly, exactly. And plus, after what they did with the hips, for instance – with this 40 percent failure rate, and they kind of hid that information for a long time – it kind of makes you wonder. They obviously didn’t think that was important at the time. There’s now the stuff with the mesh. It just seems odd and convenient that all of this stuff is all the sudden missing now that they are starting to go to trial and pay out, actually, on lawsuits.
David: I’m going to interrupt a minute.
David: This is going to be historic by the time it’s done. Corporate Action Network has a lot of things planned. Johnson & Johnson was already under government orders because of … Risperdal and stuff. I hope this sets precedence for all of the big corporations that think they can get away with, basically, murder.
Michelle: Yeah. I mean, they pay a little fine, and then they kind of go about their business, which is kind of how they’ve been operating for a while. Continue, Teresa. I think you were talking more about the documents.
Teresa: Yeah. One of the things we want to know is what’s in the mesh. What’s the chemical makeup of the mesh? There are women like myself that became drastically ill with autoimmune diseases, and it’s the chemicals. We know it’s the chemicals. We’ve talked previously about nonylphenol, and the way it increases the estrogen. And of course estrogen is linked to autoimmune diseases, so we know that there’s something there. And they don’t want to give that information up. We’re trying to dig. We have one woman that’s doing some massive research in finding the chemical attributes of it, and she’s doing a fabulous job -- all the while she’s suffering unmercifully from lupus.
Michelle: You were mentioning that. From the mesh, right?
Teresa: Right. She is fighting like a cat in water. She’s fighting hard, in hopes that maybe she can find an antidote. We really need to find out – we know the mesh causes erosion, we know it rips our organs, we know it lacerates. But we really want to take it one step further at TVT-No! – to say, “OK, now what are you doing chemically to our body?”
Michelle: That’s largely the unknown in this whole thing.
Teresa: Right. And we’ve got another lady in Canada who just started a website. She’s connecting the chemicals and the autoimmune diseases also, and she’s doing a fabulous job.
Michelle: I think that’s one of the great things, too, about having this network that you have. You just mentioned this lady in Canada. In New Zealand, I think they are having a lot of issues over there. You’re all connected, and you kind of get to help each other with resources, which is really awesome.
Teresa: That’s the next step that … TVT-No! is going, with CAN – is bringing the international ladies together, to bring more of a bigger pressure. It’s one thing to have just American women – one gentleman whose mother committed suicide after mesh; he was also there, speaking out -- to put a bigger push on them. We have our ladies in Scotland, Australia, New Zealand, and anybody else that we can get, and of course, Canada. Start getting a higher pressure on them, and getting them to do some resolution and give us some answers.
Right now, it was just the American women and one gentleman whose … story just broke my heart. We were in the middle of the press conference, and I’m sobbing in tears, hearing his story about his mother who shot herself because she couldn’t handle the pain anymore.
Michelle: When you say something like that, I think it really brings it home what’s really going on. When you mention that it was so bad that this poor woman could not even continue. That’s really powerful. And that’s really sad. You wouldn’t want that to happen anymore.
Teresa: You touched it right on the spot. The gentleman’s last words to his mother before he saw her being zipped up in the bag was, “Mom, just take another pain pill. We’ll find a doctor.”
Michelle: That gets me emotional, too. Wow. I assume he kind of had this epiphany after that.
Teresa: Right. He actually spoke at the press conference.
Michelle: Good for him. I’m glad that he’s trying to get a positive and help people out of that situation.
I think you mentioned before that you went and supported another woman that was in St. Louis? I think she was having her mesh removed, but didn’t have anybody – family – with her, and you went and helped her out. Is that something that happens often for a lot of these ladies with the mesh, like they don’t have a support group around them and they are just kind of going through it by themselves?
Teresa: Yeah, this particular woman – I have been associated and friends with her, since my nightmare began. Her husband, because of the mesh, left her. And her children are … behind her, but not 100 percent. Her choice was either go alone or not go. There’s been a few other women that I was going to go with, but they were able to find alternate people. It’s something that, if I have the funding, I’m always willing to go with the woman and stand by her and do what’s needed for aftercare after surgery. That’s what I’m here for. I kind of look at myself as a tool. I tell women, “Use me as you need. That’s what I’m here for.”
Michelle: That’s how you started TVT-No!, right? That’s your mission, to kind of help other women who are going through this stuff too.
Teresa: Going through it alone – I had David, but we only had each other – you need a network to make it through this.
Michelle: David, I know you follow a lot of the settlements and lawsuit action that’s been going around in the media. There have been a couple of big verdicts recently. Do you think these verdicts coming out are going to help the cause and sort of send a message to medical device companies about mesh?
David: The last lawsuit was a big hit because of the fact that they ruled the product was defective.
Michelle: Yeah, and that was huge. I remember that.
Teresa: One of the things that CAN wants to do is press them to get these settlements taken care of and not drag this out. It’s a multifaceted campaign of exposing them as well as saying, “Hey, you know what? Let’s get these women taken care of. And let’s not just give them a couple of dimes to rub together.” You know, $250,000 – there’s women that made that in a year, and now they can’t work. They’re now going on disability, scraping pennies together. For some women, they really focus on the money, and I agree, yes, but my focus is get the settlements taken care of, so they can get the surgery and get to a better normal.
Michelle: Yeah, because the chances of getting back to absolute normal like you were before this, are probably pretty slim, right? At least you can try and move forward and make yourself better, like you were saying, a better normal.
Teresa: There’s a lot of women that think, “Once I get it out, I’m going to be my old self again.” And you’re really not. I try to be.
Michelle: You’ve had some removals, right? But it’s still not quite the same. You’re still dealing with the issues.
Teresa: I am still dealing with pain. I still deal with infections. I also deal with the complications from all the medications that they put me on for all the pain.
Michelle: That’s another thing – the side effects from those.
Teresa: It never really stops.
Michelle: So now that you’ve done all this now, what are the projects that you are working with going forward? I know that you want to make this more of an international thing. I think before you had a petition together to try and ban some mesh? Can you talk about what’s going on with those things, David or Teresa?
Teresa: I’ll tell you what we are doing with CAN, and also Dave will say what he’s doing with the organization as well. With CAN, we are trying to merge the international. I am close with the Scottish mesh survivors, as well as in Canada and the other international groups, and like I said, we’re not going to stop. With TVT-No!, Dave’s got some things that he’s got going on, and I’ll let him talk about that.
Michelle: Sure. Go ahead, David.
David: I’m trying to get the husbands’ support group going off the ground. We’ve had a few new members in there lately.
Michelle: Oh, that’s great!
David: We’ve been able to pay for a few women’s hotel rooms and stuff. Right now, I guess our biggest focus has been the CAN thing, trying to get us all on the same page. So many groups have broken off. Back when we started TVT-No!, there really was no other groups. Everybody gets in their own cliques. Our big hope is, everybody doesn’t see eye to eye on everything, but we all have the same cause, and we want to try and get everybody on the same page.
Michelle: There’s strength in numbers in this, right? For sure.
David: There’s petitions going on all over the world. All the groups – I couldn’t even tell you how many groups that I’m a member of now. Everybody, we need to just come together, put everybody’s differences aside and fight this as an army instead of a bunch of little individual cliques.
We’ve got an awesome team. We’ve got probably six administrators that volunteer time for us now, with helping with the support group and whatever else we need them to. It got so out of hand with just me and Teresa trying to do everything. We had some women that we’re most grateful for that stepped up to the plate and at least took the load of the Facebook page off of us, so we could focus on other things like working with CAN and trying to get some funding raised and getting media attention and things of that nature.
Teresa: We are bringing in a wonderful woman who has a lot of holistic treatments for some of the issues that we’re going through.
Michelle: Oh, that’s great!
Teresa: She is volunteering her time as administration, and she’ll be working with the Facebook group and on the main page. She’ll start offering some alternative treatments, off of pharmaceuticals. It is possible to get off of pharmaceuticals, and we want to be able to offer that opportunity for women. It’s a better life to be able to live, instead of being on the pharmaceuticals and taking another medication to take care of the side effects of that medication, and so on and so forth. She is also volunteering her time.
Our admins, they are volunteer. They work hard. They are very loving. They are very compassionate. Like David said, if it wasn’t for them, we would not be able to do this.
Michelle: That’s another way that people can try and help and be involved, right? Like you were saying, volunteer their time.
Teresa: 100 percent
David: One other thing I would love to have on our staff is somebody who is registered in the field of psychology or counseling, because a lot of these women are at their wits’ end at times, and none of us are certified or anything to take care of that kind of an issue. It would be great if we could find somebody that would be willing to catch some of the calls when a woman is on the verge.
Michelle: Definitely it’s an emotional thing. Like you were mentioning, Teresa, that so many people – they’re going through this and they don’t necessarily have the support. If anybody wants to volunteer, definitely a worthy cause.
David: I’ll say the last thing, and I’m going to keep saying this: I want to see some people go to prison for this, Michelle. This is a crime if there has ever been a crime. They’ve been able to buy their way out and buy their way out, and it’s not right. They took so many lives, and they hid the evidence now. And they just keeping buying their way out. This needs to set a precedent and show them it’s not going to be tolerated for any big corporation anymore. They get a statute of being a person for tax purposes and things like that; they need to be treated as a person.
Michelle: Well, what’s been going here when you went to Jersey with CAN, I think it’s probably one of the biggest things that’s happened so far, right, to get this out in the open? Hopefully it’s going in a great direction. Like you said, there’s going to be some investigations – hopefully not just one person – but anybody who had anything to do with what’s been going on right now. I definitely feel you there, David, on that. Every time I write these stories about these companies behaving badly, you’re right; they’ll get a fine, and then they just go about their business and put another drug or device out there that’s just as harmful.
David: I really feel Mark Fleischman and the CAN corporation was a blessing to us, and I think it is going to be the straw that broke the camel’s back. I really think they have the drive. They’ve battled Wal-Mart before. … They have a lot of big plans, and I really think that this is going to go where it needs to go here. They are calling for a Senate hearing and all kinds of good things.
Michelle: It’s great to join forces with an organization like that, that’s really passionate about what they do.
Teresa: Mark has a heart of gold. I had the pleasure of spending three days with him, and he is passionate. His heart is in the same place as David’s is. To have such strong men behind us – it really helps.
David: The other person who doesn’t get enough mention – and you’re familiar with her – is Jane Akre. If it wasn’t for her, we would never be where we are right now with this.
Michelle: I spoke with her previously. I interviewed her and wrote about her actually for one of our stories. She’s an investigator, and she knows what’s going on with this stuff. She’s out there to help put the message out too, and that’s great.
Do you have any closing remarks, besides what you said, David, about the justice in this matter? Anything else that maybe you might want to let any women that are listening, know about what’s going on, maybe some words of advice or inspiration maybe?
David: Everybody needs to step up. We need more voices.
Teresa: I wanted to say something on a personal healing level – that really helped me, and I’ve talked to a couple other women that have done this. As hard as it may be, you have to forgive the people that did this to you. As long as you don’t forgive them, the anger and the hatred and the hurt – it’s going to make you sicker. It’s going to make you mentally sicker and physically sicker.
Forgiving does not mean you have to drop your lawsuit, does not mean that you don’t speak out. It just means that you’ve come to peace that it is what it is, and that you move forward. I was never able to move forward until I was able to forgive Alex Gorski and J&J, and it was hard. But it really does heal you, and it will help you pull out of your depression, and you can start moving forward with your life.
Michelle: Wow, now that’s powerful. I mean, like you said, you went there, and you shook his hand. I know that took a lot of strength to do that. Like you’re saying, forgive that and move forward. You’re not saying what he did was right or any of that, but you’re letting go of that anger.
David: Yup. She proved more strength than me by doing that, because I don’t think I would have been shaking his hand.
Problems have been going on, and the FDA has put out two warnings. And yet they’re still doing it, knowing that all these problems – that’s the worst part. They haven’t stepped up and manned up to it and said, “Hey, whoa. There’s a problem. Let’s put a hold on this.”
Michelle: You’re absolutely right, because the FDA even said, “Hey, we want you guys to do all these safety studies – that you never did.” We’re trying to find out what happened to all that. It just seems like they’d rather stop selling the product than to actually do the safety studies and release any information about it.
David: Because they know that there’s no safety in it.
Michelle: You’re absolutely right.
David: I feel like they’re selling what they can right now. They’re trying to absorb some of the lawsuits that they know they have to face.
Michelle: Thanks for talking to us again and letting us know what’s going on. You’re always on the front lines there and always in the trenches. When you come and share what you all are doing, I think it really helps a lot of people – even maybe friends or family members of women that are going through this. Thanks again for talking to us and letting us know what you’re seeing out there.
Teresa: It’s always our pleasure.
David: Yep. We will keep fighting and doing what we can to help. And as we know anything new, we will keep you informed.
Teresa: Thank you, Michelle, for fighting with us and reporting and letting our voices be heard. We’re very thankful to you.
Michelle: Welcome back to the show, Christy. It’s been a little while since we spoke with you. Just wanted to touch base. You’ve done a lot of new things since we last talked. Welcome again.
Christy: Thank you. Thank you for having me.
Michelle: First thing is, you’ve started a blog. Can you tell us when you decided to do it and how you finally said, “OK, I think I’m going to do a blog now”? Obviously it’s a big commitment. How did you think about this idea?
Christy: Sure. I started the blog as another avenue for advocacy, but I’m kind of struggling a little with the humility while writing. I think this is more than just mesh; this is a very personal attack to my body, as well as my mind, for that matter – you know, very violating, very destructive, and at times, even very embarrassing. My goal is and always has been to get the message out, as you know, and these times, I find myself speaking as if a third person, forgetting a little that this is actually happening to me too.
But that is really when I am the strongest, and probably the most productive with my foundation. And then there are times that I will retreat to my sanctuary of self-distress, and really worry for my health and my future. I ask that my followers be patient with me, because I am not only an advocate, I’m a victim too. That is my whole goal with this blog, is just to kind of work through my own feelings and just reach out to others, and I want to hear what people are thinking and how they are feeling. I think, together, it’s healing in a sense, to just keep up with a journal of sorts.
Michelle: Oh, yeah. It’s certainly very healing for you, as well as other people to read. Because you can air out all these emotions and things that you’re feeling – because you’re still going through it, and you’ll probably be going through it for a while, if not forever. It’s changed you and really made you a different person, in a way. You’ve had to learn how to deal with stuff you never had to deal with before.
Which actually brings me to the next question: You shared with us, through your story on our site and through the podcast we had before, about some of the details of the issues you went through because of the mesh. Obviously, it’s still a daily struggle. How do you continue to cope with it now? Are there things you notice that you didn’t notice before?
Christy: I will always have something in my daily life, I guess, that reminds of my injuries from mesh. As I shared in our last broadcast, after mesh removal surgery, it took 13 weeks to realize a lot of my agony was subsiding. And though I’ll always be thankful that the majority of it is out of my body, there was a lot of damage caused by the mesh. And there will forever be nerve damage, scarring, referred pain, numbness – and worry, to boot.
The numbing in my hip on my one side and on my thigh on the other, it has to be the worst right now. I mean, I feel it 100 percent of the time. It is a weird sensation, and quite annoying, actually, while I’m trying to sleep, drive, walk, anything, because it’s constant. I mean, this mesh mess really messes with your mind 24/7. It’s not fun, not fun.
Michelle: I think a lot of what we know about mesh is limited right now, because they haven’t released so many of the studies. A lot of women like you are like, “OK, I know about this, but is there something else that might happen to me later?” That’s scary.
Christy: We don’t know. We have no idea. It is very scary.
Michelle: Part of the thing … Johnson & Johnson destroyed a lot of documents – that’s what came out in the news – pertaining to their products. So those women are like, “Hey, what did you destroy that could have helped us, with the studies?” You and everybody that’s in this “mesh mess,” for lack of a better term, you only have half-truths to begin with.
Christy: Well, yeah. There’s a lot of deceiving going on out there, and it’s not just Johnson & Johnson; it’s the other makers as well.
Michelle: Oh yeah. I mean, C.R. Bard, one of the first ones.
Christy: The emails that they send out. The one with C.R. Bard -- they sent out that email not wanting to mention to others what the mesh was even made for to begin with. It wasn’t even meant to be put inside a human body.
Michelle: They didn’t test it; that’s for sure.
Christy: No. Exactly. It’s scary.
Michelle: I think there were some animal studies, and it didn’t do well there. But they just decided, well, maybe it will be OK in humans.
Christy: Let’s just test it and see.
Michelle: Back to your Surviving Mesh – your focus on advocacy. And you’ve been doing it now since the beginning, following your journey with all of this, and now you’ve got the blog. Do you foresee yourself kind of continuing this for many years to come?
Christy: Yes. Surviving Mesh has become my second name. It will forever be a huge part of who I am. This foundation, the people who come along with it, are a big part of me. That, in itself, is everlasting. You know that I created this foundation back in 2011, and my number one goal has always been to raise awareness and offer hope to those suffering.
I’ll never part with this. It is long from over. There are still so many suffering, and so many without the financial means to get the medical care they need. I’m still contacted on a daily basis with questions on where one can go for help, what type of doctors should they be looking for, if there are any organizations that financially assist and such. This is very heartbreaking and extremely unfair. I recently started a fundraiser at gofundme.com/SurvivingMESH, and my hopes are that we get every mesh victim to a doctor who can help them. It is mind-healing, in a sense, to put forth effort in helping others; I only wish I could do more.
Michelle: You mention it’s a life-changing event, and you’ve made so many connections and friends through this.
Christy: Absolutely. Some I consider more like family. We’ve shared so much -- private issues – personal is a better word – it’s a connection like no other. Probably like cancer, or any other thing, major life thing that goes on. It just draws you closer, because you have somebody who knows and understands. A lot of us suffered for a long, long time without even knowing what was going on with us and thinking that we were the only one; we were dying of some mysterious illness. Then, all of the sudden, to have all these people who share these exact same things that you tried for so long to explain. It’s healing.
You don’t want to see or hear of somebody else hurting the way that you did, but at the very same time, you’re thankful in a way – not that they’re hurting, per se, but just that they’re there to really, truly understand what you’re going through
Michelle: We’ve talked about this before – the kind of emotional and physical suffering that you go through because of this is so different from so many other illnesses.
Christy: Oh, it is. Nothing compares.
Michelle: It’s so private. It’s things people don’t want to talk about to begin with. As women, there’s definitely things that are unique to women that you can’t go ahead and start talking – like, say, diabetes or cancer, for instance, that’s something that has no gender attached to it.
Christy: That’s right. It’s a selective crowd for sure. It’s nothing glamorous. And it’s nothing you want to sit around and drink coffee and talk about. But you do want to talk about it. You do want to say it out loud just so you know you’re not crazy. And you hear that, “No, you’re not crazy. I know exactly the pain that you’re feeling.” You can’t make this stuff up. You just cannot make this stuff up.
Michelle: Reading about this – all the things that come out about it sometimes – I’m just like, really, this is happening to people – you know, it’s just so shocking, that I can’t believe this is happening and that it doesn’t have more attention. Now that the FDA is moving on with some of these things, it’s sort of like – I’ve heard some other advocates say “too little, too late,” with what they’re doing. What is your opinion on that, now that the FDA is finally coming out and sort of saying, “OK, we’re going to reclassify this now, so that the manufacturers have to do studies.” I mean, it’s been years since these things have been released. What is your opinion on that?
Christy: I think it’s about time, putting it in the politically correct way. And, like you say, maybe a little too late, but at the same time, maybe not. Regardless, they need to recognize and acknowledge the victims that … are already suffering and going through such traumatic injuries and lifelong injuries, for that matter. It’s kind of healing in itself for that reason, for us victims, to assure us that everything we’re doing and putting it out there and putting our personal life out there for the world to see – that maybe it served a purpose of sorts. Without all of this happening, I don’t think they would have come up with this idea. When I got the email today about the FDA releasing this information, I was ecstatic. I know right it’s only for the …
Michelle: The prolapse, I think.
Christy: The prolapse, yeah, which is fine. That’s a start. We’ll take it.
Michelle: It’s still mesh. It’s still mesh.
Christy: It’s still mesh, and you still get the point. And it’s like, OK, if I was the consumer and was going in and (hearing), “OK, this isn’t for you because you don’t have the prolapse; yours is just the urinary incontinence.” OK, fine, but you’re still going to use that same mesh, is that what you’re telling me?
Christy: It’s getting the information out there slowly but surely. We all know the FDA moves very slowly.
Michelle: They do. They do.
Christy: This is a start. I’m quite impressed it’s gotten this far – and very thankful, absolutely. It makes me think that, even though I’m a very small portion of this, I still feel like well maybe they read one comment, maybe they read one of my stories, to go along with the thousands and thousands of others. Maybe I’ve helped make a small, small difference.
Michelle: And that’s really gratifying. I’m pretty sure you have – and with the other women that come to you for support, you’ve definitely made a difference in their lives. I think it’s interesting, too, that the FDA focuses on prolapse so much. I mean, it is a more extensive surgery, but the things that I’ve heard that happen to these poor women that get the slings put in. They think, “It’s just a small piece,” but wow, there are some really serious things that happen. Your story –
Christy: Absolutely. Try and tell me that it’s not a Class III (device).
Michelle: And to a lesser extent, I’ve heard some people tell stories, too, about their hernia mesh – which, I think, people don’t even talk about at all. They say it’s very successful for hernias, but I mean, it affects people.
Christy: I’m not so sure of that. I’ve been getting a lot of emails, even private emails – some sharing it on my page. It is just as destructive – well, at least it is destructive. It may not be just as, but it is destructive.
Michelle: It does mess with people.
Christy: It does.
Michelle: In closing, is there anything that you kind of want to share with women right now, that are maybe just coming to this through all the media that’s starting to pour out now, that they’re just starting to realize that the problem is mesh? Kind of like what happened to you – where you didn’t know for so long because no one was telling you anything. What do you have to say to these women?
Christy: I do want to say that in my past interviews, I mentioned, “Get the mesh out, and don’t stop until you find a doctor to remove it.” What I’ve learned since is that getting it out either in its entirety or in the bits and pieces is not always the best solution. This product was not meant to come out -- ever. For me and many others, it helped tremendously. But there are also those that the removal process is not an option. Like I said here before, my doctor equated it to pulling gum out of hair with tweezers. This removal process is very daunting and very destructive in itself, and is not always the best solution, unfortunately. Very scary stuff, this mesh is.
I suppose my final words, like always, are to never give up hope, never succumb, keep at it, keep learning and keep warning others of the harmful side effects of surgical mesh.
Michelle: What you’re doing with starting a blog, or something like that, do you think that that might be something that would help other women, to maybe keep a journal – have some place where they can keep their journey and look at it maybe later or reflect on it?
Christy: Absolutely I do. From the beginning stages of when I started SurvivingMESH.org, I wanted to keep a journal. I wanted to be able to read back and reflect – like I said before, I was very grey in 2011. I knew nothing what I was talking about, and you can kind of tell.
Michelle: You’ve gone through a journey.
Christy: I was very green. But, at the same time, I started finding people; (they) started finding me. Just to be able to talk through it and write it out – I’ve been going back through three or four years of stuff, content. Lord knows I’ve posted a lot. I look back at … how my anger was. At first, I was just so, so angry. While that hasn’t gone away – I’m just going to be frank with you, I’m still very angry – but over time, you learn more.
I’m thankful for everything I have learned at this point. It’s changed me for a lot of reasons. Yes, I’m hurt. I’m not talking injury right now. It’s helped my mind. It’s helped me to cope. Yes, definitely, having a blog is another way of self-healing, I guess. It’s cheaper than a therapist.
Michelle: And then you have the option of having other people comment on it and sort of talk you through it, too. You share with other people, and it’s a very tight-knit community.
Christy: That it is.
Michelle: Thanks so much for coming on and letting us know what you’ve been up to and what you’re doing. Keep fighting the good fight, as it were. I’m sure we’ll probably have more updates and more news with you later on, as you do more things.
Christy: You know I appreciate you, as always, and I definitely appreciate the support that you give to SurvivingMESH.org.
Michelle: Thanks so much, Christy. It’s what we do, too. As fellow advocates, we all kind of stick together.
Christy: You got it. Well, thank you, Michelle. I appreciate it
Michelle Y. Llamas is a senior content writer and researcher for Drugwatch. She is also the host of the Drugwatch Podcast where she talks to patients, experts and advocates about drugs, medical devices and health. She uses her technical writing experience to provide easy-to-understand information on how drugs and devices work. But she also tells people what happens when products that are supposed to improve their lives can hurt them.
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