Episode 118: Social Media as a Tool for Patient Advocacy | Hernia Talk Live Q&A

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Speaker 1 (00:00:10):

Hi everyone, it’s Dr. Towfigh. Welcome to Hernia Talk Live. I am your host, Shirin Towfigh Hernia and laparoscopic Surgery specialist. Thank you for everyone who’s joining me live. We’re extra early because we have a very special guest from across the pond. Many of you’re here as a Facebook Live at Dr. Towfigh or via Zoom. Thanks also for following me on Twitter and Instagram at hernia doc. And my YouTube channel is also at Hernia Doc. I hope you all visited. It’s revamped and newer. So much more exciting than it was before. Today’s guest is Paula Goss. Many of you know her because she’s the founder of the Rectopexy Mesh Support Group and a great patient advocate for many of you who have had mesh related operations. She’s joining us from the United Kingdom. Where are you exactly? Paula?

Speaker 2 (00:00:59):


Speaker 1 (00:01:01):

Bristol, which is which part of England?

Speaker 2 (00:01:04):

Southwest. Yeah, Southwest. We are about a hundred odd miles from London.

Speaker 1 (00:01:09):

I love it. Thank you so much for joining.

Speaker 2 (00:01:12):


Speaker 1 (00:01:14):

So many of many, the viewers today are only logging in to hear you and hear your story and kind of hear what we have to say. Please put in your questions. Many of you have already sent in your questions, so I have those pre-prepared for us. But before we begin, for those who don’t know you, maybe you can briefly talk about your personal story as it relates to what we’re talking today and then we’ll go into the whole advocacy arm of what you do.

Speaker 2 (00:01:47):

So I had a hysterectomy back in 2009. Everything was fine, tick boo. But then I ended up with bowel issues, bowel and bladder issues, but mainly bowel issues at the time. And I was referred to a surgeon who was a colorectal who didn’t give any information actually. So that’s an ongoing thing. But I was given the LVMR, which I didn’t know what it was at the time.

Speaker 1 (00:02:18):


Speaker 2 (00:02:20):

LVMR. So a laparoscopic ventral mesh Rectopexy. Okay. Oh,

Speaker 1 (00:02:26):

Ventral. Oh yes, was ventral. That’s why that picture looks weird. Oh, do we even do those anymore?

Speaker 2 (00:02:35):

Well, apparently so, yes. Oh yes. It’s usually, yeah. No, they do do them over here. And so issues that I had following that was blocked bowel and bladder and I was hospitalized.

Speaker 1 (00:02:49):


Speaker 2 (00:02:50):

Why we don’t

Speaker 1 (00:02:51):


Speaker 2 (00:02:51):

It. So we found out that it wasn’t just, there was [inaudible] and the posterior with Mesh put in as well. Correct. But what we found out after that, and I had the block bowel and bladder and when I was going through the process of trying to get removal, was that it was something that shouldn’t have been done because it wasn’t an interception that I had. It was a rectocele only. And a rectocele in theory shouldn’t be done with an LVMR. It should have been a posterior facial repair. Yeah,

Speaker 1 (00:03:31):

sacral or rectopexy. Yeah. Just to, let me just clarify. So yes, we’re dealing with is you had a hysterectomy, depending on the type of hysterectomy you have done, it may affect your pelvic floor function because the uterus and really the cervix kind of holds up your pelvis in some ways. So if you have a hysterectomy, including usually the cervix, so there’s a super cervical and regular, if you include the cervix, which we usually do that only for cancers. Not like if you just have fibroids, for example, we try and save the cervix, and I’ve learned all this from the gynecologist, by the way. It’s nothing I learned in medical school,

Speaker 1 (00:04:14):

But it can affect your pelvic floor. And so some people get kind of like a dropped uterus or dropped bladder or dropped colon. And the way to undrop it is you just pull it back in and you have to hold it up with sutures. Yes. And or Mesh. And it’s still currently done. Most of the companies that sell used to sell Mesh specifically for that operation are out of the market because there’s so many complications associated with Mesh put on colon and put on not as much on the bladder and on the, what do you call it, the vagina, vaginal cuff, but mostly on the colon and then specifically the Mesh related pull-up that you had. That’s a weird one. I personally had never seen one before. I know that it was done, but we just don’t do that. As far as I know, I’m not a spec specialist in it. But that’s fraught with complications. Yeah,

Speaker 2 (00:05:13):

Yeah, absolutely. We see it’s became become a much bigger thing what people beginning with rectopexy. So it is a far issue now than what people realized in the beginning. Got it. We’ve men who’ve rectopexy Mesh complications, but theirs is obviously going to be slightly different because they didn’t have a woo or a uterus. So theirs is done in that Well, but yes, I make hysterectomy. They took uterus as well. I had giant and it grow into the cause of the womb. And I was in a position before the hysterectomy, I was bleeding so much that I were shutting down. So I was in hospital given blood transfusions on 26 tablets a day. So I didn’t bleed before they could do the hysterectomy. It was quite serious operation.

Speaker 1 (00:06:06):

Yeah, so you definitely, yeah, for the uterus,

Speaker 2 (00:06:09):

Something, they had something, but it all is basically pushed, caused the bulge, which is what wine problems, bowel, so that side of it. So I ended up having the removal, which was, I find I shouldn’t say fine, really, it was horrific. It was a plus operation. I’m in ITT for four days and in hospital few weeks.

Speaker 1 (00:06:40):

Oh wow. That’s not standard. Not typical. Yeah,

Speaker 2 (00:06:44):

No, I was quite ill where I had an infection, so I had to have a CED drain put in whil. That was very pleasant.

Speaker 1 (00:06:53):

Which increases your risk of complications including adhesions and hernias.

Speaker 2 (00:07:00):

So 19 a removal and then sadly ended up with two large incision or hernias in the November they started to. So I had to emerge to have those hernia yet, and I had the success and I have had hernias in the past as well, was an issue. And I do have them all hernia now with femoral hernia, which I’m living with and coping with at the moment.

Speaker 1 (00:07:31):

That’s not a good one to live with.

Speaker 2 (00:07:35):

But I don’t for operations, so I’m paying my husband to not go down any route of operation if I can.

Speaker 1 (00:07:41):

There are tissue repairs for that if you need.

Speaker 2 (00:07:44):

Oh, good.

Speaker 1 (00:07:47):

Not ideal, but you do have options. Oh boy.

Speaker 2 (00:07:52):

It’s been a bit of a time, but that was sort of the reason why I then started in two 19 because So you had

Speaker 1 (00:07:59):

Multiple incisional hernias? Yeah. But because it was strangulated and it was an emergency, they didn’t put Mesh in, is that correct? No, they didn’t. And so then it fell apart and you probably had a recurrence. Yeah. Okay. And because you had so many complications with the rectal Mesh.

Speaker 2 (00:08:18):

Well, I

Speaker 1 (00:08:18):

Had a tissue based repair for the incisional.

Speaker 2 (00:08:22):

It was, so they did the total of dental reconstruction and they used a tummy tuck. They used my tissue to strength repair,

Speaker 1 (00:08:34):

Which is, were you at my talk, we talked about using the tummy tuck as an alternative to Mesh based repairs for specifically your problem incisional hernias, which all the studies show do better with Mesh. Okay, sorry to interrupt you. I’ve

Speaker 2 (00:08:53):

Not of the incisional, but obviously I’ve got ephemeral. So whether that little nasty has poked its way out because it’s cut out from the other. No,

Speaker 1 (00:09:01):

Femoral is totally unrelated. You’re just a hernia factory.

Speaker 2 (00:09:06):

Well, I’d had five operations in the 10 months in that year. Wow. Abdominal. Think I was going to get something. I was always going to end up with a earlier subscription link because I was judged.

Speaker 1 (00:09:21):

Yeah. Well let me tell you, there are different reasons why we use meshes. The most, I would say fraught with complications is what you had, the rectopexy Mesh, because it’s directly on colon and that’s very after a small intestine. The colon is very, very, very sensitive to erosion from meshes. So to put it is a technique, but we’re moving away from it. We’re not really using synthetic Mesh as much as we used to because of these complications. And then to have a hole in your colon is just a big complication. So of all the Mesh related complications, you can think of the worst. The worst is probably the colon one from Rectopexy. Probably the second worst is the ones around the esophagus when it can erode into the esophagus, because that’s a horrible complication too, to injure the esophagus. So abdominal wall Mesh, hernia Mesh, although people can have erosions and complications, is nothing compared to complications from either esophagal or rectopexy meshes. Okay,

Speaker 2 (00:10:31):

Isn’t it? If they have a natural tissue, whether it’s more the hernia, isn’t it?

Speaker 1 (00:10:40):

Yeah, so, so the issues with, and I, I’m offering on a patient in a couple weeks, I just injected Botox today to try and improve him, you know, need to have a Mesh repair to have the best outcome from the currencies for incisional hernias. But even that is not good necessarily. So he had a Mesh repair, but it was not a good messy purse. So literally minutes later he is like, I still have a bulge. And now the size of the hurry is twice what it used to be, which makes my job a little more difficult. But in general, if you’ve already failed a natural closure, which was your incision being closed, then to do that again is going to just fail more. Anytime you fail, you tear through more tissue

Speaker 2 (00:11:34):


Speaker 1 (00:11:35):

You lose tissue. So you end up having so much wider of a hole. Like this guy, he went from six 5.8 centimeters to 11.1 centimeter almost twice. And that’s a huge hernia to try and fix. But yeah. So then how did you think of, oh, maybe I should get involved in a support group or start a support group?

Speaker 2 (00:11:59):

Well, because I’d seen other groups, which are great, other groups, I think every group’s got its place. So you are going to get something different from whatever group you are in. People discuss different things, they talk about different things, they add different things. So I think people have got every right to join as many groups as they like. And I would never, ever discourage anybody from joining as many as they want because I was the same. I sat there, I didn’t really understand, didn’t have much information. They’re all

Speaker 1 (00:12:30):

Different. I mean the discussions are a little bit different. Yeah,

Speaker 2 (00:12:34):

I mean you all have the same sort of thing mean with regards to the Mesh side of things. All of the Mesh groups, including my own, it’s all about the complications from the different meshes. Because we have vaginal, we have hernia, we have recy, we have people on our group who are thinking of going down the road of having an operation. So they want to understand so that they’re informed about what can happen. And that’s a big thing. Cause I think knowing and having the knowledge of something, you can make a more informed decision before you go down the road of having an operation of whichever flavor you’re going to have. So that’s how I sort of started. Mine really started with very few people who I knew who had rectopexy. And then it’s just got bigger and bigger and globally now. So we have members from all over the world.

Speaker 1 (00:13:22):

You know what I made the comment about rectopexy being the worst, I strongly believe in that, but I forgot to mention when they put the Mesh around the ureter, the urethra, so the transvaginal Mesh that the sling, yes. Erosion into the vagina and the urethra still not as bad as colon, but very bad. Very bad. Compared to hernia related complications. Yeah.

Speaker 2 (00:13:49):

Yes, definitely.

Speaker 1 (00:13:50):

Those are all I say bad because the treatment options are not good either. No, very difficult complications. Whereas hernias, I remove Mesh all the time, not complicated, but it’s not like the outcomes are much, much better than the trans.

Speaker 2 (00:14:15):

Depends where they’re it. And they’re not as near to these organs as what the vagina and the bowel meshes are. Yes. So you’re not as close. Yeah.

Speaker 1 (00:14:24):

Yeah. It’s organ versus muscle and fascia. So when it’s against this actual organ where the organ can get severely damaged, so esophagus where your swallowing, even saliva can become a problem. Rectum where you have to poop and then the vagina and urethra you have to urinate. Those are bad complications. Yeah. Yeah. So how long have you had your Facebook group?

Speaker 2 (00:14:49):

March, 2019 I started mine, which was literally just before I was going for my removal.

Speaker 1 (00:14:57):

And how have you found it to be kind of helpful for patients that come on it? You must hear stories about

Speaker 2 (00:15:07):

Yeah. Yeah. And I mean a lot of people, the nice thing is, I mean we’ve all got friends and we’ve all got family and they’re lovely and they’re understanding to a certain extent. It’s only somebody who’s gone through whether it is good repair or a bad repair, especially a bad repair. When you’ve got complication, it’s only living it really understand. It really is. And then

Speaker 1 (00:15:31):

Was that your first kind of foray into trying to help support others

Speaker 2 (00:15:41):

In the Mesh world? Yes, I’ve done other things in the past where I’ve done support. So I’ve done support for other things in the past. But from the message, one of the things that it was then.

Speaker 1 (00:15:52):

And then you’ve also now kind of gone beyond social media, but you’re used what you’ve learned by social media and kind of been empowered by other people’s stories to then kind of expand what you do. Can you just give us a little bit about what else you do?

Speaker 2 (00:16:06):

So we support side of things. I all over the world. So I talk to people in Canada, in the us, Europe things. We do a lot. I go to a lot of meetings as usually at the European Early Society, one with you. I also go to, I’ve been in Westminster. My MP is very good at getting issues across in part here, involvement with the Cambridge Review, the outcomes of that. So we sort of do a bit of campaigning, mainly support, but we do do a bit of campaigning as well. Can you explain that? Because awareness?

Speaker 1 (00:16:53):

Yeah. So that was something that I learned. So many of you who followed me on social media, maybe on your social media too, saw that we’re both in Manchester, I got a chance to meet you in person and many others. Many of us were involved in a session at the European Hernia Society meeting, which was basically run by well known patient advocates that are also patient representatives on the British Hernia Society, which is unfortunately groundbreaking. Most surgical meetings do not involve patients. And the American Hernia Society has started that. British Hernia Society has started that. The ACHQC, which is our US national database for hernias, has a patient committee. But in cancer societies, there’s a lot of patient involvement in those surgical societies, but most other societies do not. Medical society don’t have a patient arm to it. So it’s somewhat revolutionary. And I don’t know why I don’t, if they’re afraid of the patients or they just don’t feel that adding patients necessarily improves what they learn, I don’t know. But

Speaker 2 (00:18:12):

I think it was a disconnect. So I think that the professionals saw the patients as that were just going to be maybe aggressive, maybe not understanding because we’ve been through traumas, a lot of us have been through traumas. So think bringing the element into things isn’t good for that. However, agree with that. I think having patient input in every aspect of it all is important. And us also going these things, hearing the professionals is equally important because I think all sides I found fascinating in Manchester. Interesting. Yes, it Tietze could be quite difficult. However, I think having patients there and being able to talk to these people, which you normally really, really invaluable. Definitely.

Speaker 1 (00:19:13):

So most meetings, anyone can attend it. You don’t have to be a member to attend any meeting really. They’re usually not closed. I don’t know of any that are closed. You just have to pay more if you’re not a member. So if you’re a member of a society, you get like a discounted registration. Everyone else pays a premium. So that’s true for the American hearing. Well, we have the American Hearing Society meeting. We don’t know who’s in the audience. We know each other. But I know that there are patients and there are actually lawyers. We have a lot of lawyers that come to the American Attorney Society meeting. And part of that is they want to learn. And also part of it is, it’s kind of helps augment their understanding of the surgical interpretation of what’s going on in the world. But yeah, we have tons of lawyers and we’re okay with that. They just pay their registration and they show up. But we usually don’t know that they’re there. It’s not announced. So I’ll tell you, I’ll be very honest. So you all were there and you were there primarily because you were part of this session, which was a patient session, which I thought was very well attended by the way. I did. Almost all the seats were filled.

Speaker 2 (00:20:39):


Speaker 1 (00:20:39):

Was a big room,

Speaker 2 (00:20:40):

Was so

Speaker 1 (00:20:41):

And so. I thought that was great. But then I went to the other meetings, the other sessions, I’m like, oh, Paula’s sitting there and Jackie’s sitting there. So yeah, I was like, oh. So I’m sitting there listening to people talk and I’m thinking, I wonder what they’re interpreting. Right. When we talk about Mesh data, outcomes, whatever, I’m curious to know, did you find what we said enlightening? Or did you find it harsh?

Speaker 2 (00:21:20):

I found, depending on the session, cause some of the sessions were quite difficult. I will not lie, but some of them, yes, I thought were fascinating. I understood them, understood everything that was being said. But yes, some of them were surprising and some of them were not surprising. But all in all, I just thought it was a really, really interesting meeting and us being able to meet everybody and talk to everybody for, and like you said, there was people there that weren’t just doctors weren’t just industry, weren’t just nurses or whatever. You got to meet everybody. So it was a comprehensive meeting. It had everybody from all walks there. And I think that is the key to things like that.

Speaker 1 (00:22:10):

We in the United States, we have some rules. So if you’re a sales rep, you can’t show up to the meeting, you’re just there to sell. And so you’re going to be in the segment where you paid for a booth and surgeons can choose to come to your booth and learn about whatever you’re selling, but you can’t come into the meeting while we’re doing our educational stuff. That’s in the United States. Now, if you’re part of the industry or the education part, the research part, then as long as you pay for your registration, anyone else, you’re free to show up. You just can’t be the salesperson. Yeah, I don’t know if that’s true in the European Hernia Society. I think the rules are a little bit more lax when it comes to industry relations in Europe. So one comment which I agree with is we didn’t have any male patients represented. Did you notice that?

Speaker 2 (00:23:08):

Yeah, that’s true.

Speaker 1 (00:23:10):

Yeah, to be fair, I didn’t pick up on that until this comment right now. And for sure the male complications for inguinal hernias especially is can be devastating. Yeah, absolutely Devastating. Yeah. I had a couple patients this week that flew in from out of state and one guy, actually one guy, yeah. I was like, wait, 2017 you’ve been dealing with this for 20. And then I figured out exactly what was wrong with him. He just started crying. I told my mom and she’s like, a lot of pages cry in your office. I said, she’s like, the men cry. I said, I know sometimes the men cry more because they, I showed them, I showed ’em the imaging, I’m like, here’s your imaging. This is what it’s showing, explains exactly why they have their symptoms. But up until then everyone said, oh, it’s a nerve. Oh, we got to freeze this nerve or it’s all in your head or whatever. And then it kind of clicks in them right there in front of me as I’m going through the process of showing them what I think is going on that Yeah, that’s exactly it. And I’ve been suffering since 2017 and you figured it out and they just start crying and it’s like a relief, a relief cry. But also like, oh my God, I’ve suffered for so many years, cry. I wish I’d come earlier or something. There’s a lot of these kind of, I wish I could or I wish I had type situations.

Speaker 2 (00:24:49):

But like you say, I mean it’s a shame that there wasn’t a male patient presenting, but then maybe that something in the future. And for sure they could have attended they so they could’ve attended anyway. I

Speaker 1 (00:25:03):

Don’t think people know they can attend because as someone on Twitter after that meeting was unhappy that they were not included in the session. And I said, well, you can always attend. And they’re like, oh, we didn’t know that. So I think people didn’t know that they, they’re free to go attend.

Speaker 2 (00:25:19):

Yeah, absolutely. Absolutely. Yeah. So that’s something for the next one.

Speaker 1 (00:25:26):

I had a discussion again with Dr. Sheen who is the president. We’re just giving some feedback back and forth with each other about what a great meeting it was and really liked, talked about actually the patient section too. It’s really a British hernia society thing. So it would be great. So the way the European Hernia Society works is they don’t really exist as a society. The American Hernia Society exists. Each country has their own individual like hernia society, like us, we have one American Hernia society, but each state doesn’t have their own society. We’re all one. But in Europe, the continent has the Hernia society, but each country has its own. So for example, this year was a Manchester, last year was in Copenhagen. So the Denmark Hernia Society ran the meeting next year it’s in Barcelona. So the Spain Hernia Society meeting. But are they as interested to have an arm of patient? I don’t know. That depends on the Spanish Korean society. You know?

Speaker 2 (00:26:37):

You would hope so. I mean, having seen this success with this one, you would hope that that would be the case.

Speaker 1 (00:26:43):

Yeah, you would hope so. And I think definitely the American Free Society has learned from this and will continue to include more patience as part of it. I got sidetracked because the question I was going to ask you was, so in the US the medical care is provided either by private insurance or in special circumstance. So age over 65 and a couple of other circumstances, it’s like a government sponsored healthcare. But we don’t go to our senator or president or anyone to ask for please approve this care. But you all do you go to your member of parliament, right?

Speaker 2 (00:27:38):

It it’s for different things. I mean your mp, he in your area. So where I live, different P and where Jackie lives, she’s got certain and where somebody elses. So you’ve got mps that are all regional to different areas. They deal with everything, anything. So I come to him and I’m, or I can discuss that the picked up this so you your everything. But I to him at the Mesh, the line which you get things put into parliament and change and not just him because he spoke with another eTEP that was doing and able to bring forward a lot of our issues to the debate. So we tend to do things on that level purely since the recommendations, the come recommendations sub recommended not all them. So there specific ones that we feel need to be approved by the government, which they’re at the moment not doing. And that’s another reason why we will go to our MPS and push to get these recommendations implemented.

Speaker 1 (00:28:55):

It’s very interesting though because your relationship with your MP seems to be much closer than our relationships with our government representatives.

Speaker 2 (00:29:04):

Yeah, absolutely. And I’ve heard that before from others

Speaker 1 (00:29:07):

And they encourage that. Is that something that’s encouraged as part of their job?

Speaker 2 (00:29:13):

Mine’s good and some others are very good, but there’s other people that have tried to get their MPS on board and they’re not having any of it. So I think it depends if you get, I mean my mp, the good thing about my mp, I shouldn’t say it’s a good thing, but his son had a hernia and has had hernia. Sure. So therefore he’s got something in common with what I’m discussing. Others, it may not be that case and some just want to help others just do not want to go near it.

Speaker 1 (00:29:42):

And so when you meet with that, with your mp, what do you discuss?

Speaker 2 (00:29:46):

Everything. We discuss everything to do with my group, the media, what’s going on with the recommendations, what’s going on with health in general, patient safety, what’s going on with the Mesh centers. We discussed everything to do with Mesh

Speaker 1 (00:30:05):

And then what is their power to, could they say okay, for you specifically, you are approved to get this treatment or they say for the population in my group, in my city,

Speaker 2 (00:30:21):

All approved

Speaker 1 (00:30:22):

Such care or how does that

Speaker 2 (00:30:23):

Work? No, no. So over here how the care works over here is we’ve got the National Health Service.

Speaker 2 (00:30:29):

National Health Service is, I suppose people would call it a free service, although we’ve paid national insurance all our lives. So when you pay national insurance, that is what basically pays for the National Health Service. So I don’t go into an operation on the NHS and have to pay anything. However, my removal and my hernia surgery, I had to go privately. And so if you go privately, you have to pay for your own care. So that would be very similar to how it’s in the states. The MP is more of a government side of things, so he can’t facilitate anything health wise. He can take questions to the Department of Health and Social Care and to the Minister for Health and social care and ask questions for you and get answers for you. But he can’t facilitate anything.

Speaker 1 (00:31:20):

So your meeting with them is helpful. How?

Speaker 2 (00:31:24):

Because they can get questions to the Department of Health and to other mps and other ministers and you can gain more support and put pressure on the government to make them DOE things. That’s the

Speaker 1 (00:31:36):

Idea. I see. Okay. That’s similar to the US system where you kind of plead to your representatives and hoping that they take that discussion that multiple representatives end up taking that discussion to home base and to Congress or whatever. Oh, okay. Yeah. All right. Okay. Let’s go through some questions that we’re slipping in. One of the questions has to do with your philosophy about partnering with others. You know, came to a doctor’s meeting, I don’t know what else you do, but having been on Twitter and other social medias and watching their kind of reaction to just the European Hernia Society meeting, I felt like there are some people that don’t want partnering with other groups and some that do want. So what is your philosophy?

Speaker 2 (00:32:34):

I think collaboration is key with everybody. And I don’t mean that you collaborate with a Mesh manufacturer and therefore you are then classed as a pro Mesh person. Collaboration information and sharing is the most important thing. So by doing research and by going to different meetings, whether it is the one we went to or whether it’s others that I’ve got coming up, it’s them getting information and knowing what your take is on things as well as you hear what theirs is, you will never agree. I will never agree with certain aspects of what people are saying. However, I think it’s important to be professional, polite, listen. But it doesn’t mean that you are on that side, which is what I’ve obviously had a bit of lately as you saw.

Speaker 1 (00:33:29):

Yeah, you did kind of. It’s difficult. I’ll tell you, I was up till past 11:00 PM last night just responding to people that were just unhappy, concerned, whatever the situation is. So I talk with industry a lot and my take is always to encourage industry to listen to patients and not listen to surgeons as much as they do. Yeah, I feel like many surgeons kind of tell industry what they think they want to hear. I kind of give them my view of the world and because of so much of what I do is revisional, I give them kind of my take on the view of what needs to be improved. And I’ll tell you some companies are, I mean they love it because it gives them an opportunity to change their messaging, improve their products. We can’t improve hernia meshes without industry. There’s no surgeon that can start all of a sudden making a better product.

Speaker 1 (00:34:39):

You have to work with industry. So that said, I, I’m constantly feeding them what I’m learning from you all, which is what is hurting you, what is bothering you, what are you worried about? What are you concerned about? And then the hurting industry should be able to respond. Now some of them, they’re like, whoa, that’s just way above our heads. We’re just a little company. We’re not here to save the planet. And others are saying, no, we’ve been doing this for a while, it’s not working. And if we can learn on how we can do it better based on feedback that you’re getting, let’s say from patients, then we’re all ears. So those are the companies that I love, the ones that I want to be kind of partnered with, which are the ones that are open to change and open to kind of admitting or at least acknowledging. I don’t think they can admit because then there’s a lot US is a very lawsuit heavy country. They’ll be sued even more than they’re being sued now. But at least acknowledge that they can do better than what they’re doing. Yeah,

Speaker 2 (00:35:44):

I think the difficulty is for people to understand is patients need to be heard. There needs to be patient safety first and for foremost, and if you can may never going to change anything, but if you go in with that attitude, you will never change it. And I’m not of that attitude. I am always of a go in there and I’m going to say it as it is, and I’m not what was put on certain things about being all this Mesh and everything else I, I’ve been through hell with Mesh. So to label me that is actually a real insult. But that’s possibly why they do it. That’s the negative side of social media. The positive side is the hundreds and hundreds of messages I get after that from people who completely understand what you are doing, what you are fighting for, and the support that you’re getting. If you cannot change industry, even in the slightest little bit, you shouldn’t be in it. If you don’t want to meet these people and you don’t want to understand everything, then you shouldn’t be advocating. As far as I’m concerned, it’s

Speaker 1 (00:36:54):


Speaker 2 (00:36:55):

It’s a massive, massive thing to do and you need to be understanding everything. I don’t won’t profess that I know it all and I don’t know it all, but I think everybody should go and they should go into it fully. Research everything you’ve seen in my presentation, I said to them, I would like to see what the figures are on Mesh repair and non Mesh repair for hernias.

Speaker 1 (00:37:21):


Speaker 2 (00:37:23):

That is something that you can’t get anywhere. You can’t get it anywhere to see the comparison. You then get the ones who are asking why can they now not continue doing the old-fashioned repairs for hernia? Maybe you can answer that one. Yeah. So Mesh, as they call them, repairs that people used to do for hernia. I know because I was at the meeting Why? But

Speaker 1 (00:37:48):

I’ll give you my take. I’ll give you my take. Yes. So the Mesh was introduced in the eighties and it was introduced because we had a lot of complications with tissue repair. Tissue repair is not easy. You have to understand your anatomy and what you’re relying on with tissue repair is a patient’s own tissue, which by definition is unhealthy because it has a hernia. So to sew a unhealthy tissue to each other doesn’t have good outcomes. And the outcomes were poor. There was chronic pain, people were debilitated, the hernias became even larger. People couldn’t work anymore. Their construction workers couldn’t work. There were people, the security guards that had to be on their feet all day. They couldn’t work. And every time they had a surgery, they were in the hospital for week. That’s how it used to be. And people forget about history. We didn’t just all of a sudden decide we need Mesh because everything was so good before that.

Speaker 1 (00:38:46):

So Mesh came into place, all of a sudden recurrence rates went down dramatically by more than 50%. Chronic pain went down. People don’t want to believe that. But chronic pain went down and people were doing outpatient surgery. This in my city, my hospital is where we invented outpatient surgery for Inguinal Hernias, Dr. Lichtenstein Lichtenstein. So that was revolutionary to be able to do an operation on a patient. They can go home same day, they can go back to work early and they can go down with their lives. Now it became to a point where industry was like, wow, we can sell products we weren’t selling before. It’s a whole new industry. And they started developing different meshes. So they went from one Mesh to 20 meshes and each one was a little fan than the other one. And the way it was sold to the surgeon was like, this is easier to put in.

Speaker 1 (00:39:47):

This is shorter operation, less and smaller incision, quicker recovery and so on. What it really did was it prevented surgeons from appreciating the art of hernia surgery. That’s my take on it because I teach the residents all different forms of hernia repair, including tissue repair. And they’re like, wow, this is really beautiful. The no other surgeon does this with us. They can see all the nerves and identify everything. And it’s a very delicate operation, not so much when you’re just slapping there and it just sticks to everything and you don’t get a hernia. So then hernia recurrence was no longer an issue.

Speaker 1 (00:40:32):

Our attention came to chronic pain. Oh wow. We’re actually not doing a good job with the hernia repair because we’re not appreciating anatomy. And now we’re putting products on the spermatic cord and nerves. And if you’re already a heavy-handed surgeon that didn’t appreciate anatomy for the first place, you’re causing injuries. And there was a learning curve like, oh, we can’t put in Mesh on intestines. They’re putting it directly on intestine. They didn’t know this was in the early eighties. They didn’t know they couldn’t do that. They learned then now we change it and we’re still learning. So this whole Mesh pro, Mesh, anti Mesh, it’s part we’ve seen in politics too. Are you this pro that as if everything is a black and white situation to be Mesh implies that. And every time someone tells me they’re anti Mesh, I give them scenarios of a patient that would be hurt or unable to be helped and disabled if they didn’t have Mesh and many of them say, oh well of course look for that person. We’re okay with Mesh. Okay then you’re not anti Mesh. Hoping that Mesh is used appropriately and not overused. And I do believe the United States we are overusing Mesh, but,

Speaker 2 (00:41:53):

And I imagine you’ve got some quite big complication rates from Mesh, especially the polypropylene then.

Speaker 1 (00:41:59):

I mean what’s the definition of big thousands of patients? Yes. Percentage-wise, low number. So percentage-wise not as high as for hernias, at least as people are billing it. I mean patients come in, they think a hundred percent chance they’re going to have a complication or nerve pain or chronic pain. That’s not true with experts. It’s like low. I don’t have thousands of patients running around that have had surgery by me that are disabled. It just doesn’t happen. But because it’s a percentage of a very large number, yes, total number of people, there’s a lot of patients out there that are maimed by hernia repair and not necessarily the Mesh. Not necessarily the Mesh.

Speaker 1 (00:42:50):

This patient that I told you about that was crying, he just has a heart recurrence. Whatever was done, they left a piece of fat behind that. FAT just needs to be removed. So that’s not a Mesh issue. That’s a surgical technique issue. And when people say, oh, we don’t believe it’s a surgical problem, it’s a surgeon issue, we think it’s only a Mesh issue. That’s not true. If you have a car accident, is it the car or is it the driver? It could be either. If it’s like those cars that used to blow up and stuff or unsafe, it’s a car issue. But if you’re drunk or if you’re a bad driver or someone swerved in front of you, that’s not a car issue. That’s like a driver issue. So to paint everything with one is what I don’t like. And I feel like there’s so much of that on social media. Yeah. Okay. Quick question. May I ask how Paula started her advocacy? Because we need it here in the United States. I guess, how did, I guess you mean outside of social media, how did you start saying, I need to start talking with politicians?

Speaker 2 (00:44:02):

Just as I was going along and I was researching everything that I was going through, and I suppose in my job I was HR ahead of HR for a big company here. So I sort of know ways in which to get into places. And I was just banging on doors. I was emailing people, I was phoning people. I was banging on doors of politicians and the NHS here and everybody until they answered. And I just wouldn’t let up until the answer answered.

Speaker 1 (00:44:33):

Yeah, that’s really impressive. And just to note a lot of what you’re doing, what I’m doing, I don’t get paid for hernia talk. Every time I go to a meeting, I lose money because I actually have a lot of money. I don’t

Speaker 2 (00:44:46):

Get paid. I do all this for free. This is all my time. I stay up sometimes till two, three o’clock in the morning talking to people in the States in Canada. And I do all of this out of my own time. I am not paid by industry.

Speaker 1 (00:45:03):

It’s dedication.

Speaker 2 (00:45:04):

Dedication. But

Speaker 1 (00:45:07):

Some people like knitting and the other people like hernia advocacy.

Speaker 2 (00:45:11):

I just find the whole side of this really fascinating. And for me it’s, it’s been a learning curve journey, but also something that I think if you’re going to advocate and you’re going to support, you need to do it thoroughly and fully and you need to be completely on board with it. And that’s why I do it. I love talking to people as you would’ve seen. And I like all that side of things. And I think if you can care for one person, that’s brilliant. If you can help that one person, that’s brilliant. If you can help more than that, fantastic. And

Speaker 1 (00:45:46):

That’s the, yeah, well God bless you. We had Sue Sue also from the UK here I think last year. And yeah, she’s basically dedicated her whole life to this kind of work. Yeah, it’s a lot of, a lot of time and energy and sometimes a lot of hate tweets, but it is what it is.

Speaker 2 (00:46:08):

The negative side and the positive side. Do you put yourself out? They expect the negative as well as the positive side

Speaker 1 (00:46:14):

Question. Yes, Paula. I agree. But Mesh was brought in to save money and lots of ag and lots got approved on the backs of other meshes. My experience was so much pain. That’s true. Very true. So it was brought into, I don’t know if it was brought in to save money, it did reduce hospital stay. So that did save money. It did. But it Mesh is expensive and at least in the United States, hospitals lose every time there’s a Mesh related operation versus a non Mesh related operation. So it’s really an industry sponsored kind of movement.

Speaker 2 (00:46:54):

Yeah, I think it depends. I mean, I know over here, I mean the bio Mesh isn’t very expensive, but the polypropylene meshes were not that expensive. And I know that a lot of the surgeons spec, I’m talking specifically eTEP point of view, were being paid per device. So they were being helped and paid per device they put in and they were quite cheap to buy. So the hospital wasn’t looking a lot of money, but the surgeon was making money and where that person was asking about them being approved on the back of others, I know that. And that’s not just Mesh, that happens with everything,

Speaker 1 (00:47:31):

Every device.

Speaker 2 (00:47:33):

The work I was doing with the research at the University of Bristol, you only have to have something that’s very similar to something. And if the hospital say, yeah, you can try it on 10 patients, they’re allowed to do it. So yeah,

Speaker 1 (00:47:47):

Still true in the United States, but as of I think next year, European Commission has changed that from meshes. So you’re going to be seeing a lot of meshes removed from the market next year because they don’t have patient specific data on patient outcomes. Yeah. Here’s another question. Oh, Paul is amazing. There’s a comment for you, Dr. Towfigh. How can we advocate to get a panniculectomy for hernia repair approved? So in the United States, and I think the same is true, panniculectomy is only approved as indicated if it’s done for an infection complication. Otherwise, if we do it, we just do it for free. And don’t get me started with how insurances make money because they just like to disapprove of everything. In the United States, it’s horrible. But regard the meshes in the us we don’t necessarily get paid any different if we use Mesh or not, especially for Inguinal hernias. But in the UK I was told that what you said is true. The surgeons do get paid more for putting, and in China this is 10 year old information. I’m telling you, it may have changed. But in China, the surgeons were actually getting kickbacks every time they had Mesh put in. And there’s not a lot of Mesh in China. It’s not a rich country when it comes to medical care. But yeah, it’s like, wow,

Speaker 2 (00:49:10):

That doesn’t like a

Speaker 1 (00:49:11):

Kickback. That’s not cool.

Speaker 2 (00:49:13):

No, no, not at all.

Speaker 1 (00:49:16):

Okay. Next question for Paula, which is, what are some of the most useful social media resources related to hernias?

Speaker 2 (00:49:26):

You are one of them.

Speaker 1 (00:49:29):

Hernia talk. Hernia talk.com.

Speaker 2 (00:49:31):

Exactly. There’s lots of them. I mean, there’s lots of different hernia, whether it’s hernia doctors or hernia people. So I follow a lot of people who have been through hernia, mainly on Instagram actually. Cause it is, it’s more literal and you can see it. So I follow a lot of that. I do a lot of research, do a lot of the old Googling, but I’ve also got the hospital near me that are very, very good at helping me get the information I need. And also the researchers here. So I do a lot of that. But yeah, there’s so many people out there, whether they’re patients on groups or individually that you can get some information from.

Speaker 1 (00:50:16):

There’s a member on hernia talk.com. His or her, I don’t even know who it is, is named Good intentions. I think it’s he. And I wish I would meet him one day. I would love to have him as a guest actually. Yes. So informed. He constantly puts up like, oh, I read this article and that article. Sometimes I’m like, I haven’t read that article. This is great. He teaches me honor attack. But very

Speaker 2 (00:50:44):

Bit like me though. I mean, I do spend a lot of time reading research. I get a lot of research sent to me and I do read a lot of research and it is interesting. And that is the only way you’re going to learn about things is by seeing those. And then if you can try and get your own research, which is what you were discussing previously on social media yourself, if you can get your own research going, then that’s a good thing as well.

Speaker 1 (00:51:12):

Yeah, I’ve always told these larger kind of groups where there’s so many members that they should publish their data because the only way you can talk to doctors is through data. You can complain as much as you want, but the easiest way to not be dismissed is to show objective data. And hopefully one day they’ll do that. Okay. How do you navigate the misinformation you might encounter on social media

Speaker 2 (00:51:41):

Being informed? I think it’s difficult. It’s it you’re not going to get it straight away. So you’ve got to read everything and then find out for yourself. I read everything and then I will go to either the sources of what I’m reading or I will go to the professionals and ask them if what I’m reading is correct. So that’s how I try to navigate misinformation. But there is a lot of misinformation and there’s also a lot of factual inaccuracies that are on social media.

Speaker 1 (00:52:14):

I mean, even by doctors. I actually don’t like Instagram for hernias because most of the hernia related information out there is like, oh, you have a hernia, it must get fixed immediately. Call me. I’m like, yeah, that’s so not true. So yeah, there’s a lot of misinformation. Okay. Another question. If they put a Mesh on you that doesn’t fit you or that you shouldn’t have been put on because it doesn’t fit the type of patient, should we sue the surgeon for malpractice or the manufacturer? Can I answer that?

Speaker 2 (00:52:47):

Yeah, that’s a question for you.

Speaker 1 (00:52:49):

Yeah. You should focus on getting better. So you should find the doctor who can fix you and not focus on suing. I see so many patients that are just overwhelmed and overtaken by I need to sue. And at the end of the day, they’re not getting the care that they need. And years go by because suing the doctor or the manufacturer is a five plus year dedication of time for it to actually go to fruition. During that time, all you’re doing is you’re focusing on the suit and that’s not going to help your situation. So I would say neither. Just get to doing better. Yeah, that’s my take on it.

Speaker 2 (00:53:29):

Yeah, it’s difficult. I mean, I can understand why people do want to litigate, but I think getting yourself better first or as good as you can be first because it’s so stressful. Ligation is really stressful.

Speaker 1 (00:53:43):

Very, very stressful. And if it’s malpractice, the surgical technique was beyond the standard of care and you have to be able to prove that it was beyond the standard of care was very difficult to do then that’s a surgeon issue. If it’s an actual problem with the Mesh, so for example, the Mesh broke in some certain area that there was a lawsuit for that composites, Google Mesh, it had a ring and the ring would break. And the breakage of the, it would make like a sharp spirit would pierce the bowel. Yeah. If that’s an actual mechanical design function of the Mesh, then that’s a industry thing. What we’re seeing now is people get hernia recurrences and they’re suing the Mesh manufacturer. And it’s like, that makes no sense to me. But from a business standpoint, the law firms can make much more money off of industry than enough of a surgeon. I mean, how much money can make off of a surgeon versus Yeah,

Speaker 2 (00:54:44):

We don’t really a

Speaker 1 (00:54:45):

Billion dollar company

Speaker 2 (00:54:47):

Over here. I mean, I know they do it a lot in the us. So over here there’s not a lot of product liability ligation for Mesh, it’s mainly people pursuing the surgeons or the hospital trusts. There’s not a, I think there’s two I know of that are doing product liability and they’re still quite a way off.

Speaker 1 (00:55:08):

The other question is, but Dr. Towfigh, how can we finance removal? So in the United States

Speaker 2 (00:55:15):

Where they are,

Speaker 1 (00:55:17):

Yeah, first of all, you can ask for money from friends or GoFundMe, but in the United States, we actually have sponsored healthcare. You can go to a county hospital. There are plenty of doctors that work in the VA or the county hospitals that can help you with Mesh removals. It’s not like everything has to be done in a very expensive private situation. So you either have, and Mesh removal is covered by insurance. So if you have actual private health insurance or even public health insurance, you can go see a surgeon to do that. All the surgeons in university based hospitals that do this operation accept all forms of health insurance. And those of us that are in prior practice also accept health insurance and their county hospitals where their care is free. So removal, removal of brushes

Speaker 2 (00:56:15):

Is, it’s more difficult here. Cause we’ve got obviously nine Mesh centers that will remove vaginal Mesh centers. Don’t get me started on how they’re working though. Cause they’re not functioning very well. Pepsi will be included in that, which is another slight concern. But hernia wise, there’s nowhere for people to go here if they want to get a hernia Mesh removed. And it’s the same as if you want to get a hernia fixed. For me, I had to go privately on the lhs. It’s classed still as a cosmetic procedure. So if you, oh my god, I know. So if you want to get a hernia repaired, it is really not that easy over here.

Speaker 1 (00:57:03):

Wow. Can we change that or is that not changeable?

Speaker 2 (00:57:08):

We’re We’re trying. We’re really trying.

Speaker 1 (00:57:11):

Yeah. Okay. Here’s the next question. Given the massive user base, do you think social media is particularly well suited to get yourself informed about some of the rare problems such as Mesh reaction that goes to that discussion about when you have a large user base publisher data?

Speaker 2 (00:57:34):


Speaker 1 (00:57:35):

That’s a gold line.

Speaker 2 (00:57:36):

Yeah, I think that too. But I also think that there is so many different groups and so much information that people can glean and get what they need, I think from all of them. And they’re from all over, not just UK, not just us. You’ve got groups all over, which, I mean, I read some of the things that are put on there that absolutely fascinating and really interesting and should be put everywhere.

Speaker 1 (00:58:08):

Yeah. Yeah, I agree. There’s a lot to be learned from the smoothies. Yeah. Generally speaking, hernia Mesh has a bad reputation on social and other media. What do you think are the causes? Is it because only patients who have bad outcomes tend to be more active on social media or because there’s a divergence between outcomes as perceived by patients versus the surgeons?

Speaker 2 (00:58:32):

Good question. The UK, well it is very good question. From the UK point of view, it was always vaginal Mesh originally then it was rectopexy. Hernia was a bit of a forgotten case, sadly. But it’s becoming more highlighted. So I don’t know if it’s necessarily, I don’t think you can blame the patients. I think it is the national health here because they don’t want to see that there’s the complications with hernia Mesh or anything to do with hernia here. So I think for us here, it’s more difficult. Maybe you’ve got more of not a bad reputation there. You’ve probably got a better reputation for her earlier over there, but not

Speaker 1 (00:59:23):

From hernia talk.com. What I noticed is that people come and go. So they come on when they have an issue, they get their information, their answer, whatever they have their surgery. Unless they do, they do well, then they’re off the community. And then most of the other people that are on are still dealing with their issues or they’re not the ones that are cured usually. They’re a handful that are still, they kind of are my saving grace because they’re there helping answer everyone else’s questions even though they’re kind of done with their situation. And I’ve seen the same is that people on Facebook have mentioned in those support groups that they find a lot of the Facebook groups are very negative. And I published about all that, about how negative it is and how the lawyers tend to feed on this negativity and prey on these patients. But once the people are done with their situation, they get off the support groups because it’s so negative that it’s just not feasible for their psyche to continue.

Speaker 2 (01:00:29):

You also get, I’ve had that said to me, I’ve been through removal, I’ve had the hernias fixed, why do I still do it? But I think you need to see the journey from beginning to end. You need to see what people are going through dealing with and still dealing with. Or if they are great, we want to know that they’re great. And I think having a positive input of people who’ve had Mesh removals or hernia repairs, however they’ve had things done, seeing that after point is so important. Yeah, so important.

Speaker 1 (01:01:03):

Yeah. Another comment, I saw six surgeons that refuse to remove Mesh. I was basically forced to pay out of pocket. Well, there are plenty that don’t force you to pay out of pocket that you could have seen or maybe you had to travel. Next comment. The complications in hernia Mesh are huge. How many Mesh removal operations are being performed weekly by you? So I do about 300 operations a year, about 80% of them. And it varies by each year. About 80% of them are revisional. So I don’t know if that helps answer your question. And they quantify that by how many surges are now removing Mesh and how many removals are being performed per week? No, definitely the number of patients are high and we don’t have enough surgeons qualified to offer services to these patients, which is why I’m seeing people who have seen other surgeons that have completely missed the ball on what’s going on and then they see me. So I agree. I agree with the comment. We definitely need more surgeons to the needs of the patients because the number of surgeons that can do these operations or even have an interest to do these operations are way too low for the number of patients

Speaker 2 (01:02:18):

That need. Well, we’ve got over here, I mean there’s very few, there’s possibly two I know of that will remove hernia Mesh over here in the UK. Possibly only two surgeons and many of them go Germany or go abroad, come to you. You can’t get them over here. Very, very good. You,

Speaker 1 (01:02:41):

I’ll finish with this last comment because I don’t want to take up too much of your time. It’s, it’s very dark where you are right now. It’s

Speaker 2 (01:02:47):

Very dark. Yes.

Speaker 1 (01:02:49):

It says we need surges like you to advocate with us. So I will say, I think it was 2015 or 2016 when I invited the first kind of patient group to meet with a select number of surgeons to just hear them out. And it was kind of a private meeting. It wasn’t part of the whole, it was part, it was during, but not part of the grander surgical society meeting. And I’ll tell you, most surgeons were afraid of what I was doing and I may want to bring them at the meeting one day. And that sentiment has completely changed. Yes. I feel it’s completely changed and we’re not as afraid of the patients and the patient advocates as many we many had been maybe. And I’m hoping that that implies that there are more surgeons that will be advocating for patients and not just kind of doing their thing without understanding the implications of what we do.

Speaker 2 (01:03:52):

Honestly. No, I think it’s imperative. It’s so important.

Speaker 1 (01:03:55):

Yeah. So on that note, I want to really, really thank you. I’m so blessed to have been there and had the opportunity because I was there to meet you and everyone else. I plan to bring on more patient advocates and friends that are of mind and hope to improve patient care for everyone because that’s absolutely why I do this every week and why you do what you do,

Speaker 2 (01:04:24):

You do and you do a great job.

Speaker 1 (01:04:26):

I really appreciate it. I’ll see everyone next week. Join me again for another hernia talk session live. Follow me on Facebook at Dr. Towfigh where you can review this. This will be posted on my YouTube channel as well. And thanks for everyone who subscribes to me on Twitter and her and Instagram. And thanks for everyone for being nice on social media. I do appreciate it. Thank you everyone. Thanks again, Paula. I appreciate it.