Endo Battery

Chronic Pain: The Overlooked Connection to Hernias With Dr. Shirin Towfigh

• Alanna • Episode 109

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In this eye-opening episode, we sit down with the renowned hernia specialist, Dr. Shirin Towfigh, to explore the often-overlooked connection between hernias and chronic pelvic pain in women. Dr. Towfigh sheds light on the challenges of diagnosing no-bulge hernias, the role of gender bias in delayed or missed diagnoses, and why specialized care is crucial for effective treatment.

 Key Topics Covered:

  • Understanding the unique presentation of hernias in women.
  • The hidden pain of no-bulge hernias and their misdiagnoses.
  • How gender bias impacts the timely recognition of hernia-related issues.
  • The critical role of detailed imaging in identifying hidden hernias.
  • Lifestyle factors that may influence hernia development and symptom management.
  • The necessity of seeking specialized care for accurate diagnosis and treatment.
  • An exclusive preview of the innovative Hernia Point Score tool designed to aid in identifying these elusive hernias.

Whether you’re navigating chronic pelvic pain, supporting someone who is, or simply curious about the intersection of women’s health and hernia care, this episode offers invaluable insights and actionable advice.

Tune in now to discover the empowering information that can help you or your loved ones reclaim quality of life!

Website endobattery.com

Speaker 1:

Welcome to EndoBattery, where I share my journey with endometriosis and chronic illness, while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own. Believing that open dialogue helps us grow and gain new tools always align with our own. Believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience and hope, from personal experiences to expert insights. I'm your host, alana, and this is EndoBattery charging our lives when endometriosis drains us.

Speaker 1:

Welcome back to EndoBattery. Grab your cup of coffee or your cup of tea and join me at the table Today. I am thrilled to be joined at the table by our guest, dr Shirin Tofai, a renowned hernia specialist and one of the few surgeons in the US entirely dedicated to diagnosing and treating all types of hernias. She's a leader in her field, offering expert care and options ranging from open and robotic-assisted surgeries to non-surgical natural treatments. Dr Tofai's personalized approach and expertise has been praised by trusted voices in the pelvic pain community and I am so grateful that she is joining us today. Please help me in welcoming Dr Shirin Tofai to the table. Thank you, dr Tofai, so much for joining me today. I'm really excited for this conversation. So thanks for taking the time out of your busy schedule to sit down with me today.

Speaker 2:

I appreciate it Any opportunity to share knowledge and learn from others.

Speaker 1:

I'll take yeah same. I appreciate it because I'm constantly learning. I'm like a little sponge. And something that you do. That's kind of a unique aspect of caring for people and education is you talk all hernias. So can you tell us a little bit about yourself and what you do, so that we understand it a little bit better?

Speaker 2:

All hernias all the time. Everything I do is hernia related. Little bit better All hernias all the time.

Speaker 1:

Everything I do is hernia related. I love it.

Speaker 2:

I have a friend that's not in medicine. He's like there must be a better word than hernia. Maybe you can kind of brand yourself as a different title. I'm like, nope, it's hernia.

Speaker 1:

You got to learn to love the word. It's kind of like endo. My daughter's always like can you stop talking endo? I'm like I can't, I'm sorry. Like endo, my daughter's always like can you stop talking endo? I'm like I can't, I'm sorry. So tell us exactly kind of what you do when talking about hernias all the time.

Speaker 2:

What does that entail for you? Most people that are in medicine they kind of feel that hernias are just, you know, whatever. They either discount it as a important disease or it's just not given the notoriety that needs to be given. A hernia is a very common disease. It's men get it, women get it, all ages get it, and yet it's surprisingly poorly diagnosed, unless it's very obvious. So my goal is not to treat all the obvious ones, because there are a lot of general surgeons and general practitioners that can diagnose and treat that. My goal is to treat and help in the diagnosis of everyone else who is suffering from chronic pelvic pain, chronic groin pain, complications from hernias and get them best diagnosed and get the best care that they need.

Speaker 1:

Yeah, can you, just for those that may not be familiar with what a hernia is, can you explain what that is, so that we have a better understanding? Moving forward, sure.

Speaker 2:

A hernia, in kind of a broad stroke definition, is a hole, usually a hole in the muscle or fascial layer of the abdominal wall, through which contents that shouldn't be there go through. Usually it's fat. We always worry if there's organs or intestine that go into these holes. Fortunately that's not as common and it could be. Either you don't even know you have it or you can be in the emergency room with intestine that's dead stuck in it.

Speaker 2:

The range of problems you can have from a hernia is very, very broad, and therefore the treatment plan is also very broad, and general surgeons are typically the ones that treat hernias, although there are urologists sometimes that treat it, and sometimes these are misdiagnosed and so patients end up in their gynecologist's office being told oh, it's probably your ovarian cyst again. Or they're sent to a pain doctor because you must have some nerve damage or nerve pain, or it's on your head. They're sent to a psychiatrist because maybe their relationship is not good with their spouse. That's why they're manifesting pelvic pain. It's pretty interesting the kind of treatment some hernia patients get that aren't for their hernia.

Speaker 1:

For their hernia, which is interesting that you bring that up, because you do not just like the typical hernia, that you do no bulge hernias and I think from my understanding of this it's very easy to miss and very often misdiagnosed as something completely different than a hernia. Can you explain that a little bit, because I know no bulge. Some people look at that or they hear that and they're like what's a no bulge hernia? I've never heard this before. In fact I've had doctors tell me that. I'm like have you considered a noble hernia? I might have it, and they're like I don't know what that is I'm like let me help you with this, yes.

Speaker 2:

So it's not a phenomenon that I invented. There are chapters in textbooks back in the 70s that have talked about occult inguinal hernias, which are hernias that cause problems, usually pain, but don't present with a bulge. So most people understand hernias as a bulge. They go to a doctor's office and there's a bulge that they'll say oh yeah, that's a hernia and that's usually well-diagnosed. When I came into practice I was one of the very few females that actually had an interest in a pure hernia practice and I started seeing more women just by chance, I guess, I don't know and they started telling me the same story over and over again. And so now we've studied it, we understand it better. So in women more commonly but it also can happen in men, especially in very thin or very, very fat men or women you can have the pain associated with hernias and not have the bulge.

Speaker 2:

This is more common in the groin, not so much at the belly button, at the belly button, which is a common place for hernia. If you have pain to the left or right of your belly button, that may actually be umbilical hernia pain, which is at the belly button. That's really as much as I can say about belly button occult hernia. Sometimes they present with nausea or bloating the groin. It's much more complicated. So you can have pain in the groin, you can have nerve type pain where it's hypersensitivity, or shooting pain into the scrotum, the labia, into the vagina in women. The scrotum, the labia, into the vagina in women. The pain care rotate around towards your lower back. Some people think they have back issues or hip issues. It's really the groin and then it can also radiate into their upper inner thigh.

Speaker 2:

Those are the more common symptoms. Less common symptoms include nausea or bloating, like I said, back pain and then hernias can cause pelvic floor spasm, which is poorly understood why, but it's all part of the pelvic floor and everything related to pelvic floor spasm can be a cause of hernias. That includes painful sexual intercourse, pain with orgasm, also urologic symptoms, painful urination, frequent urination there there's one lady she would urinate like 30 times a night just something crazy from the pelvic floor spasm related to her hernia. You fix the hernia, all that went away and, less commonly, rectal pain and then pudendal neuralgia, which is kind of this nerve type pain from pelvic floor spasm that people often get misdiagnosed and are sent through this whole very complicated pudendal neuralgia workup. At the end of the day, it's a hernia that's causing the pain.

Speaker 1:

How do you differentiate that though? Because for a lot of us, especially within the endo community and other chronic illnesses, especially when you're dealing with gynecological illnesses, I would assume that would be really hard to differentiate between a hernia and these other pains. How do you, as a doctor, identify those things and differentiate that?

Speaker 2:

It takes a lot of time and careful history taking for one. Usually these type of hernia pains are better when you're lying flat and resting, and worse when you're upright and active. So if you tell me that when I lay flat my pain is worse, that's not a hernia related problem, and anti-inflammatories tend to help this. Then you have to go through a physical examination and, though you can't see a bulge, if you ask the patient where their pain is, or if you have a very light touch with your finger, you may notice a slight fullness or inflammation where a groin hernia would be. And then, lastly, is imaging, and we've developed a. I mean ultrasound is good, but if it doesn't show anything, I think MRI is the best study to do, and we have a hernia protocol, which is available on my website for anyone to download and use, which is a hernia protocol MRI. It's a Valsalva based MRI no contrast that is very sensitive in finding these little ETBC hernias that could be causing so much pain and symptoms.

Speaker 1:

So can anyone like go to a normal radiologist and ask for this specific one and be able to then send it to someone like you who is a hernia specialist, because that's something that you know? I have considered myself as someone who struggles with a bunch of pelvic pain and knowing that I've had good surgery and yet I'm still struggling with some nerve pain and I'm still struggling with other pelvic pains and I know there are other people in my circle with the same issues where they're like okay, I've had hip surgery twice now, I've had endosurgery, I've had you know, and so now it feels like they're chasing another reason for this pain.

Speaker 1:

So, they can get this specific hernia protocol for MRI and send that off to someone like you to get read correct.

Speaker 2:

Yes, so any radiology group should be able to do this MRI. It's nothing fancy, it's MRI pelvis. But we have specific areas where we want them to focus on and do these valsalva images, which is not common to do for most hernias. There may be radiologists that feel it's too time-consuming to do these MRIs and therefore they won't do it. But From a technology standpoint, every MRI machine should be able to do these.

Speaker 2:

And then what you point out to is correct, which is you need the right person interpreting the images so they may look and say it's normal, and then I'll look at it and say no, look at the fat in this inguinal canal, that's not normal. So I do offer online consultation where you can send me your images and medical records and I'll try and review it for you. Just contact my office for that, and I actually enjoy it. But, yeah, there's just a handful of us that will correctly interpret these MRIs. There are some really great radiologists that may hint on it too, but as a practitioner, you really have to push them to specifically look and evaluate the inguinal canal area.

Speaker 1:

Do you feel like that there's more gender bias with this too?

Speaker 2:

with hernias in general, Because I know.

Speaker 1:

I would assume from like a female perspective, we tend to have a lot more of that pelvic pain and get dismissed as something completely different than a hernia and people probably wouldn't even look at that.

Speaker 2:

So true. We've published a couple of different papers on gender bias, sex-based differences. The women that we see are diagnosed years after a typical male would be diagnosed for their hernia. They're often given narcotics at a rate much higher than men. It's really unfortunate. Many of them are just told to live with this pain. There's something called bikini medicine, right? So it's either your breasts or it's your, like GYN stuff. Otherwise, women tend not to have any of the problems it makes no sense, it's so weird.

Speaker 1:

We can't have complex bodies, can we?

Speaker 2:

So you know, when I talk to my medical students, when I teach them, I ask them when do you guys get taught about hernias? And it's during the male genital urinary system, so it's always connected to a male disease. There are gynecologists that don't know that women can get hernias. So we have to do a better job of teaching as early as medical school that women can get hernias, and we actually published another paper that specifically outlines how women present differently than men for the same exact disease. Men tend to present with a bulge, women tend to present with pain, men tend not to present with pain actually, and so there are surgeons that say if it's painful it's not a hernia, and I'm like that's completely wrong. So there's a lot of misinformation out there and I think, because it's always been a male-dominated view of hernia disease and male-dominated care, all of our surgical techniques are for men. All of our randomized controlled trials included only men. Our mesh is designed for a male anatomy, so there's a lot of bias against women for this disease and diagnosis and their treatment.

Speaker 1:

I feel that's true across the board for women's health care in general. So that aligns, that aligns. Do you see more people who come in with chronic pain conditions like endometriosis and like adenomyosis, who have had multiple surgeries or even have comorbidities? I hate that word comorbidities for some reason. It doesn't sound right to me. But other co-challenges like Ehlers Dallau syndrome with hypermobility? Do you see more patients that come in with those comorbidities having hernias? Is that a more common diagnosis combined?

Speaker 2:

We have not seen a correlation like that with most of the diseases you mentioned endometriosis, ovarian cysts, polycystic ovary disease, those kind of chronic pelvic pain situations. However, many of these women who have the hernias are given lots of laparoscopy and explorations and hernia is and I'm doing air quotes here ruled out because when they put the camera in they see maybe a couple little endometriosis implants. They don't see an obvious hernia. And what's important to know for these doctors that go in there and this is for all types of surgeons is you can't completely rule out and this is for all types of surgeons is you can't completely rule out surgically rule out a hernia by just putting a camera inside the belly Because these small hernias, you will not see the hernia unless you take the extra step of taking down the extra layers that cover the hernia, the peritoneum and the fat between where the bowels are and where the hernia is, to actually look at the muscle level.

Speaker 2:

If you do that and there's no hernia, fine. But a lot of women are told oh no, we looked, there's no hernia. And so they're then taking down this whole endometriosis adenomyosis treatment plan because that's been seen on imaging or on laparoscopy but that may not be the main source of their pelvic pain.

Speaker 1:

Yeah, and that's something that for someone like me who's had a good surgery and I know a lot of people who have and they're still chasing oh, this is endopain. Well, maybe it's time to consider something completely outside of the endosphere, if you will.

Speaker 1:

Endosphere, if you will and start looking at other pain factors, because I think we can get stuck in this. This is what's caused me pain for so long that we forget that there's other things that can contribute to our pain, and this is a sneaky one that most people it's not on their radar, which is why I wanted to bring this up and why I wanted to have you on, because it does affect the quality of life. How does it affect quality of life for a lot of these people?

Speaker 2:

Yeah, sneaky is a good term. You know simple things like sitting. Right now I'm sitting in front of you for this podcast. If I had a hernia, that may be very painful for me, or I may be, at the very least, fidgeting a little bit. And so many people have jobs in front of computers or sitting for a long time and these hernias affect something as simple as that. You don't have to be a construction worker for the hernia to affect your quality of life. But also if you're having pain with sexual intercourse, that's going to affect your life and your relationships. Having pain with sexual intercourse, that's going to affect your life and your relationships. If you're having, you know, this kind of difficulty wearing like. You can't wear jeans. You tend to wear a skirt. You know what do the men do? Little things like that. That can affect your life and you have to change what you normally do to accommodate this groin pain or this pelvic pain. And then, of course, there's the medications that are thrown at you.

Speaker 1:

Does it affect your back at all, like with numbness? Does it wrap around at all and down into the leg? Does that happen or is it pretty centralized into the pelvis growing area? Typically no absolutely so.

Speaker 2:

people with back pain a fraction of them may have hernias causing their lower back pain. There are people that I've saved from having surgery. It's not common, but some people it's normal to have lower back sciatica or something like that. But what happens with the groin pain is it can wrap around your lower back and people feel it wrapping around their lower back. The reverse is also true. If you have something called sacroiliitis or it's like an inflammation of the joints in your back where the pelvis and the spine kind of join, that can wrap around and give you groin pain and kind of inner thigh pain and sometimes testicular pain in men or labial pain in women. So that's where imaging and the right history, you know, can help determine the right diagnosis.

Speaker 1:

That's fascinating. I'm learning so much. I knew that there was some of this out there, but now it's making me think a little bit more about all these other things that I hear on a daily basis, from not only myself but other people. I mean, I think this is kind of common to have all these other symptoms and not even think of this. So this is blowing my mind.

Speaker 1:

We're going to just keep going with that it's so common, though, but I just I'm sitting here thinking how many people think that this is something completely unrelated to their preexisting conditions, and they're chasing the next thing and they just can't find it. But this is I don't know. This is fascinating to me, Okay.

Speaker 2:

I'll tell you something. Hopefully next year we'll be able to launch it. We've been working on it for many years. We're calling it the hernia score, so it will be a free online resource where you can just go online and plug in all the different symptoms you have and it will spit out a score as to the likelihood that a hernia may be causing these pains. That will help people like you're talking about. Maybe it's the hip, maybe it's the back, is it my endo? These specific, targeted questions of the history will help tease out whether it may be a hernia or not causing the chronic pain.

Speaker 1:

I can't wait for that Right. Me too I think that will alleviate a lot of questions going on here.

Speaker 2:

Yes, yes exactly.

Speaker 1:

How do you treat these hernias Once you do find them? You know we've gone through the diagnostic process. You figured out there's some hernias in there, or maybe even just one, or maybe multiple. How do you go about treating this? Because I can only assume that not every doctor could treat, especially no bulge hernias.

Speaker 2:

Yes, well, I agree with that. The typical standard treatment, at least in the United States, is a mesh-based hernia repair either open or laparoscopic or robotic with mesh hernia repair either open or laparoscopic or robotic with mesh. And that's pretty good for the typical hernia, especially ones with bulging. I have a problem putting in a large piece of mesh for like an extremely small hernia, especially in people that already have this heightened sense of pelvic pain. So, depending on the situation, the body habitus of the patient and their other medical diseases, I offer them the gamut.

Speaker 2:

So they can get an open tissue-based repair without mesh. They can get a laparoscopic or robotic tissue-based repair without mesh, or they can get a laparoscopic or robotic repair with mesh. They may need a lighter weight mesh if they're thinner or really small hernia, or heavier weight mesh if it's a bigger hernia. There's a whole concept of femoral hernias which have a whole different treatment algorithm in my mind. But if you go to a hernia specialist like me and other colleagues of mine in the US, we should be able to offer you a wide range and talk with you specifically tailoring the risks and benefits of that procedure to your needs. So if you're a ballerina, I'm going to give you a different treatment option than if you're a construction worker.

Speaker 1:

The personalized care aspect of this is true in any specialty and I can't impress this enough on people is that if you have a specific condition or disease, it's important that you find someone that specializes in that disease, because I mean, we talk about this all the time in the endosphere, if you will again. But, we talk about. You know, not every GYN is equipped to handle severe disease, because it is complex, right Everyone?

Speaker 1:

has their specialty. So I mean, I think this is very similar in regards to especially the no bulge in those specific hernias that are just tricky to navigate for most general doctors.

Speaker 2:

That's true and it gets tricky for women because your menses and the hormonal changes will make everything hurt. So they may come and say my groin pain is really worse during my period and they're like aha endometriosis. But it's not, it's your hernia. The pain just spikes during menses. We saw at least 25% of the women we treat will specifically remark that their hernia pain was worse during their period. So these are little details that you should know about that aren't exclusive of gynecologic disorders.

Speaker 1:

That's so fair. I would have never thought that.

Speaker 2:

Right.

Speaker 1:

Like hernia, pain Worse during the. How do we deal with that in menopause? Does it get worse in menopause too? Because I'm, you know, surgical menopause.

Speaker 2:

No, I don't think so. It shouldn't be because the estrogen peak is not there.

Speaker 1:

Interesting. Those are the just things that I always think about, too is like the full gamut of like our lifespan and how that affects each stage of our lives.

Speaker 1:

Cause you never really know, until you are in that situation, whether it's more severe or not. So that's interesting to think about that. The menses can affect that For sure. Oh man, how do we, as someone who maybe is considering hernia are there things, lifestyle changes, that affect the way that we are feeling? Is there a lifestyle change that we would need to make to maybe improve our symptoms?

Speaker 2:

Absolutely. I would say that if you think of the anatomy right, you got the whole. There's a muscle and fascia around it. So the tighter that muscle or fascia, the less symptoms you'll have because it'll kick out that hernia. The looser that muscle or fascia, the more things will protrude out and potentially more symptoms. So people that are fit or have really good core function do better. Athletes are less likely to have hernias. And if you're gaining weight, lose that weight.

Speaker 2:

If you were looking for good exercises for your hernia, all core-based exercises yoga, pilates, swimming, lifting weights, sit-ups those are all excellent and encouraged to prevent hernias and also to help control hernias. Things that increase your abdominal pressure are considered bad for hernias. So chronic cough, like I may do during this podcast, coughing constipation, where you're straining A lot of women are constipated, pregnancy for sure can exacerbate a hernia. That's an increase in abdominal pressure. And if you're straining against like a weak pelvic floor, let's say you have uterine prolapse or prolapse of your bladder or something you have to strain to urinate, those are also not good for hernias.

Speaker 1:

Sounds like most things in life.

Speaker 2:

Right, yeah, I mean, usually we say no constipation, no cough, and then be fit.

Speaker 1:

Right. Do you recommend pelvic floor PT for patients with hernias, or is that get your hernia fixed and then do pelvic floor PT A?

Speaker 2:

lot of women and now more men, because pelvic floor PT is becoming more common are being sent to their pelvic floor physical therapist for their chronic pelvic pain and the pelvic floor therapist will go. Oh yeah, you have a really tense pelvic floor and it may come. It's only on one side, by the way, which is an even more of a. You know, maybe it's the hernia causing it. People that have pelvic floor spasm due to a hernia hate pelvic floor physical therapy because it's not treating the underlying problem, which is a hernia. They actually have pain during and after the therapy session and prefer not to do it, whereas people with other causes for pelvic floor spasm actually do get good benefit. So I can't say it's bad for you, it's just not helpful.

Speaker 1:

That makes things a little bit different too, because when there's pelvic floor physical therapists treating two different conditions, that's where I think, man, how do they navigate that? If there's a pelvic floor physical therapist listening to this, what would your advice be to them in treating someone who has two pain conditions?

Speaker 2:

Yeah, I mean it's a problem. There are people with pelvic floor injuries and other reasons for pelvic floor spasm. It may be psychological in some people. I would say that if you absolutely need the pelvic floor physical therapy and it's very painful for you to undergo it and that's what's preventing you from getting good physical therapy. Of course, I get a lot of referrals from physical therapists because they really understand the body and they're like I think this person has a hernia. But putting those patients aside, I feel that some people benefit from having some type of suppository before the physical therapy session to help with muscle relaxation. There's muscle relaxants in these suppositories, whether it's vaginal or rectal, and then they get their physical therapy session. So that primes them to be better and more tolerant of the physical therapy.

Speaker 1:

Okay, that makes a lot more sense because I know a lot of people, I mean myself included. There have been times where I'm like I don't particularly love pelvic floor physical therapy because it can be painful. But you don't know, I think for the patient sometimes it's hard to differentiate between the trauma of your pelvic pain and other conditions and times, other visits maybe with other providers that have been traumatizing.

Speaker 1:

So you know we we do hold that in our pelvis right. So it's hard for us as patients sometimes to differentiate between what is painful because we of our past experiences and what's painful because of other conditions, and that's something to consider. Is the pelvic floor helping or do we need to look at another avenue? So I never realized that that correlation was there between.

Speaker 2:

Yeah, I would say for sure. If pelvic floor physical therapy is painful for you, and or you have it on one side, where they say your spasm is on one side, then do consider a simple angle hernia as the cause of your pelvic floor pain.

Speaker 1:

Okay, how do we, as patients, advocate for ourselves in that? Because I feel like as we get more savvy as patients I mean I don't know if you've experienced this, but I feel like patients are becoming way more savvy, and so they're coming to their providers saying something's not right, or can?

Speaker 2:

we look at this.

Speaker 1:

How do we advocate for ourselves when we think that we could potentially have a hernia?

Speaker 2:

I would say be very resilient. You may go to your own medical doctor and they'll be great and they'll be up to date with these newer ideas. But if they're not, don't stop there and don't lose hope. Get a second opinion right. I have this podcast called Hernia Talk Live and I specifically pick and choose doctors, whether they're general surgeons or other specialties gynecology, pelvic floor, pt, pain, urology, orthopedic surgery, spine surgery and I talk with them and we review different topics. Go to my podcast and find the doctor near you, for example, who I've interviewed. The people that I interview I stand by. They're people that I believe are good doctors. They understand disease processes. I've shared pages with them so they understand what I do and my patient population and go to them. And if they're in your state, great. You can even do a telehealth with many of these. If they're out of state, you may have to travel and try and get multiple opinions until you get your answer.

Speaker 1:

Right. Well, and that's what's hard too, I feel like the patients. It's really put on the patients a lot of times anymore to find that care, and I don't think it's that fault of the doctors necessarily. I think our medical system isn't structured in a way that teaches this as much. You know, like if you don't know, work with another provider, and I think a lot of doctors do. But I think a lot of us as patients have had that medical trauma and seeking out that care can be very intimidating. So what you're saying is wonderful, because it gives people an avenue to search out care that fits their needs better in this area and I think we all need that starting point right.

Speaker 1:

Like it's intimidating to try to find someone when you're talking about something that's not well known.

Speaker 2:

It is. But the people that I interview, that I speak with, they're used to getting people from outside of their own area to come to them for second opinions and so on, cause they're I do consider them experts in their field, and so you know I'm already vetting these people for you. So now go out there and figure out if they can help you.

Speaker 1:

Talking about the trauma of like looking for providers and things like that, do you see more of your patients that have hernias? Maybe not more of your patients, but do you see patients that come in that have trauma like medical trauma that maybe is exacerbating the pain of the hernia?

Speaker 2:

Sure, yeah, absolutely. I have patients that have had multiple operations to try and treat their hernia pain and they've had hysterectomy, oophorectomy, appendectomy, even their gallbladder removed, and they're just told it's all in their head after that because there's nothing else to remove. That's more common in the women. I've noticed that in men. And then you know there are people that have had poor experiences. They've had their own personal experiences, whether it's PTSD from something medical or something non-medical. You have to be very cognizant of the fact that everyone has their own story and they come with you with that story, plus now this kind of unresolved pelvic pain, sometimes for years.

Speaker 2:

I have a lady currently that I'm helping treat 20 years, her kid's 20. It happened right around her pregnancy time, so the kid's now 20 and she still doesn't have resolution. And not everyone is lucky to have a spouse that will stay with them for 20 years or family that will support them for 20 years as they're struggling through symptoms. They can't sit at parties, they can't go out to dinner events, they're always with some pillow that they have to sit on. They can't do long plane rides or car rides. They become sensitive to foods that you know, can't go to a restaurant with them, or everything is difficult. So that's a very difficult lifestyle to live.

Speaker 1:

Wait, you're telling me that sensitivity to food is another symptom of this.

Speaker 2:

Well, there are people that have this kind of syndrome of problems, which includes starts with pelvic floor spasm and then they get SIBO, which is the small intestinal bacterial overgrowth, and then they get food sensitivities because everything they eat gives them bloating or something like that. They may have an underlying autoimmune disorder that makes them more sensitive mast cell activation disorder and then what you were alluding to before, they have Ehlers-Danlos syndrome, which coincides with their endometriosis and their small intestinal bacterial overgrowth, or SIBO, and mast cell activation syndrome. They're all like one.

Speaker 2:

And it's very difficult to treat patients like that because people with Ehlers-Danlos syndrome are more likely to get hernias and their treatment is very different than the average patient. So, yeah, there are patients of mine like that that are very complicated.

Speaker 1:

Interesting. What's different with the EDS patients compared to those other patients, maybe that don't have a hypermobility syndrome?

Speaker 2:

So the Ehlers-Danlos syndrome patients, the EDS patients that have the hyperflexibility, the Ehlers-Danlos Syndrome patients, the EDS patients that have the hyperflexibility, hypermobility syndrome, they are more likely to just have loose fascia and muscles and if they have surgery let's say they have a hysterectomy they're going to get a hernia from that incision.

Speaker 1:

Interesting.

Speaker 2:

Because they don't have enough collagen. Their collagen is not normal, so you need normal collagen to heal and so if you're not healing the incision that's why we prefer laparoscopic surgery for these patients, because the incisions are much smaller to heal. That's not a big incision, for example. That's number one. Number two they get pelvic pain because everything is loose. Their pelvic floor is loose and their groin is loose. And I've noticed that when I go in there I have a special technique for these patients with EDS and I tighten their inguinal floor. A lot of their pelvic floor symptoms go away. I can't explain it, but it's happened on every single patient I've done it on. So they don't need the organ prolapse surgeries and all the other operations which they don't do well with anyway, because you're operating on unhealthy collagen, low collagen kind of tissue. So you have to be very careful with those patients. You don't treat them like a typical hernia patient. They can't get tissue-based repair and they can't get just a mesh patch. They have to get a combination of both.

Speaker 1:

Interesting Because this is me in a nutshell I know, right, I'm the poster child of all things comorbidities right now. Why I do this podcast is because I'm learning so much about me. But I know I'm not alone and that's why I feel like if I can break this down into an easy digestible way of learning for those of us who aren't doctors and we're not providers, maybe we can advocate for our care better, and that's kind of why I'm doing this podcast. But, man, every time I sit down with someone like you, I'm like okay, one more step to take, but that's good, it's a good way to look at individualized care.

Speaker 2:

Yeah, very much. I'm looking at my care.

Speaker 1:

I'm looking at. Okay, this could be contributing and it's good to have that open mind and that good knowledge to get better care, and that's sometimes not an easy thing to do. But I'm thankful for people like you who are bringing this up, because, as someone with EDS and endo and all these other things, it's easy to go down this rabbit hole of trying to figure out what is the cause of my pain. And when you're saying it's, I mean I think it's similar to endo in a lot of ways. It's a whole body.

Speaker 2:

Yes, yes it is. You know, it's so interesting that people don't make that connection. I had a lady who came to me. She stayed at the Mayo Clinic for a month to try to figure out why she had this like lower abdominal and pelvic pain and she was abusing the heating pack so much she had burnt her skin. Her lower abdomen had changed color. It's called erythema abdicni. It's when you get exposed to heat chronically and she had white skin and then the area where she put her heating pad was all like brown. It was crazy. I'd never seen that before. I learned about it after her.

Speaker 2:

This was many years ago and, by the way, her mom has Ehlers-Danlos syndrome and her aunt has Ehlers-Danlos syndrome. You would think that that would get into the history at some point. No, a month. They did so many tests on her and basically told her it's all in her head. And then she came and saw me. I'm like, no, you have ehlers-danlos and that's why you have the chronic pelvic pain and I'll fix her hernias. And she got better. So no more heating pad and and chronic pelvic pain went away and her pelvic floor symptoms went away. But my point is like you. Just I don't know why people don't ask these questions I don't or they don't make the correlation. They don't know any better. I don don't understand it, but you need someone that will spend the time and the effort to go deep into your story.

Speaker 1:

How often is it for someone with an EDS diagnosis to have hernias? How many of them would you guess have a hernia?

Speaker 2:

Very common. I would say the majority have some type of abdominal wall or pelvic floor disorder. Majority yeah.

Speaker 1:

Okay, well, we need that protocol. Let me know when that's available for checking off that. Oh, the hernia score. Yeah, the hernia score.

Speaker 2:

I'll make sure I promote it once it's out.

Speaker 1:

Because we're going to need that for this EDS patient over here mostly. Yes, very true. I mean it gives us some sort of hope. I don't know how many patients out there and I know I am certainly probably in that population of constantly looking and feeling defeated and I know that a lot of us do because we are chasing pain in our pelvis all the time and it can be so many different things, and that's why I think having this tool to put in our tool belt as something to consider and knowing that there is someone out there that can give us hope and another symptom that maybe we can figure out is huge, because it is going to optimize our lives significantly if we can figure this out.

Speaker 2:

I mean it's a huge quality of life issue right Absolutely and people are going back to their normal life. I'll tell you, besides this one female patient that I'm treating, with a 20 years of chronic pelvic pain, I fixed her hernia and an element of her pain went away. She still has other things to deal with, but she can now sit and all her urinary symptoms are improved, so that was a big coup for her. I had a son who brought his mother in and the mom was, I think, in her mid-70s or so, or mid to early 70s, chronic pain. She had a hernia. I fixed it and she would limp. She had so much pain for 22 years I think she had 20. She's the one that still holds the record 22 years. The son came in and he was crying because he said that he had forgotten what it was like to watch his mom walk without a limp.

Speaker 1:

That's crazy.

Speaker 2:

How crazy is that.

Speaker 1:

And sad all at the same time.

Speaker 2:

That's emotional when he said that Because he was like in his 50s, which means since his 30s he's been seeing his mom limp Right Wow, and they had just given up. Everyone told her there's nothing wrong with her, it's not her hip right, and they just left her at that. It's not your back, it's not your hip. And she had, I think, an inguinal or femoral hernia or both. I don't remember. This was a while ago, but yeah, she now walks without a limp after 20 years.

Speaker 2:

Her son had forgotten what it was like that's your walk normally yeah, yeah, that's just all right like I mean you talk about the limping.

Speaker 1:

Is it because of the nerve or is it the muscle, like what would cause that limping?

Speaker 2:

so it's not common to have a limp, actually um with hernias. But I think she had learned to not bear as much weight on that one side because in her activating the psoas muscle or whatever on that side would exacerbate her groin symptoms so she would lean onto the other side. It's not uncommon for people to lean on the opposite side when they're sitting. Walking usually is not affected. That's usually a hip thing, but in her that's how it was.

Speaker 1:

Interesting. I mean we are master compensators in most things in life.

Speaker 2:

So that actually does that checks out.

Speaker 1:

I know I am. I'm a master compensator, so we all want to be pain-free and if we can figure out how to compensate to not have pain in normal functioning things, we're going to do that Right, and so that makes complete sense. And something that I struggle with personally is figuring out why I'm compensating. So, again, this may be another avenue to consider, because we are master compensators where there's a reason for it. So pay attention to those little signs.

Speaker 2:

Little signs, yeah.

Speaker 1:

This has been enlightening for me.

Speaker 2:

I hope so. It is so enlightening for me. You're not alone is the point. The point is you're not alone.

Speaker 1:

No, absolutely not, and I can think of off the top of my head, like several people that I've talked to on a consistent basis, who are still struggling with all of these things. So I know that this is going to be beneficial to so many people. What is something that you are looking forward to in the advancement in hernias, in repairs, in talking about no-bold or those little tricky hernias? What are you excited for in the future?

Speaker 2:

I am excited at kind of making hernia repair parity among the between the sexes. So I want women to get the correct care. I don't want them to have a higher rate of recurrence and chronic pain and death than men. That's just not acceptable and I'm hoping that industry will pick up on this and understand that it's important to make products that are more appropriate for the female anatomy, as opposed to treating them like a male pelvis when they do have products for hernia repair.

Speaker 1:

Yeah, I'm hopeful for that as well. I'm hopeful that we, as women, will have more of an input in medical care.

Speaker 2:

Well, there's more of us in the hernia field that are female. There's a new group of younger generation of women that are banding together and promoting women surgeons, women's care with. With more of us in the field, there's now research being done that includes women, the same clinical trials that have been done for men. The group out of Michigan, at least, is hoping to get funding to do the same trial for women. So we understand what happens if you offer surgery and if you don't offer surgery. Is it okay to just watch some of these hernias and not over-treat women as well?

Speaker 2:

Well, and then I fund a research award every year for anyone. Anyone's eligible if they just include women in their research. Like that's how low the the bar is right now is just include looking at gender differences in your research project. That's part of the American Hernia Society awards that you can get. So anyone out there who likes to do research and is interested in looking at gender-based differences in hernia care, a good chunk of cash is there for you if you send it to the American Hernia Society man, if I was smart enough for that, I would take it Right.

Speaker 2:

Yeah, I mean whatever it takes to promote it, and obviously cash helps.

Speaker 1:

Absolutely. It absolutely helps in everything you do. Thank you so much, dr Tofai, for sitting down with me and talking about this. I know this is going to make a big impact for so many people because it's been on my radar, but until someone mentioned it Sally Sorrell mentioned this to me a long time- ago.

Speaker 1:

And that put it on my radar, and it was something that I've kind of always wanted to learn more about, because I think it's probably affecting more of us than we realize, and so for you to sit down and take the time to talk to me about it and educate me a little bit more about it, I know that it's going to help so many other people, so thank you so much for doing that.

Speaker 2:

I hope so too. Sally's great. She was one of the guests on my podcast too, and she's done a lot for endo she does a lot for endo, For those that want to follow you and learn more.

Speaker 1:

where can they follow you at?

Speaker 2:

I'm on Instagram and Twitter at herniadoc. My website is beverlyhillsherniacentercom and I'm on Facebook. It's my own name, Dr Sharon Toffai. So happy to see you all. You can also sign up. It's free to go on the herniatalkcom If you have any questions. I'm there to moderate, to help answer that. But there's so many really intelligent members on that discussion forum where you talk amongst yourselves and get answers, get advice, get referrals to doctors in your area that can help you.

Speaker 1:

That's amazing. Thank you, we will be looking that up promptly after this.

Speaker 2:

Thank you for that.

Speaker 1:

Yes, thank you so much and until next time, everyone continue advocating for you and for those that you love.