10% of women in the United States have a debilitating but treatable condition that unfortunately is misdiagnosed, and six out of ten of them stay with us as we talk with doctor Shivani Parekh and Doctor Hilary Simon about endometriosis.

Next on Kentucky Health.

>> Kentucky Health is funded in part by a grant from the Foundation for a Healthy Kentucky.

>> In the movie history of the world Part one, Mel Brooks, playing the King of France, said it is good to be the king.

Speaking for most men when it comes to endometriosis, it's good to be a guy.

Worldwide, 176 million women of reproductive age, including 10% of women in the United States, are affected by endometriosis.

Unfortunately, six out of ten of these women remain undiagnosed.

For those of us who do not have endometriosis, what measures would you take knowing that every month you may experience debilitating abdominal pain and the possibility that because of this, you may become infertile?

To help us get a better understanding of the complexities of endometriosis we have with us today, two guests.

Doctor Hilary.

Simon.

Simon, I'm sorry, and Doctor Shivani Parekh.

Doctor Simon is a graduate of the Edward via Virginia College of Osteopathic Medicine.

She completed her surgical residency at the Allegheny Health Network in Pittsburgh, Pennsylvania, and then a fellowship in colon and rectal surgery at the University of Louisville.

Doctor Simon is now an assistant professor in the Division of Colon and Rectal Surgery at the University of Louisville.

Doctor Parikh is a graduate of Saint Louis University School of Medicine in Saint Louis.

She completed a residency in obstetrics and gynecology at Trihealth in Cincinnati, Ohio, and then a fellowship in minimally invasive gynecologic surgery at the University of Louisville Hospital.

She is now an assistant professor in the Department of Obstetrics and Gynecology in Women's Health at the University of Louisville.

Doctor Simon, Doctor Parikh, thank you both very much for being with us today.

>> Thank you for having us.

>> Doctor Simon.

I apologize for.

>> It's okay.

>> It's terrible.

Colorectal surgeons should have more.

>> Respect to say, like Simon says, the game.

>> Yes, ma'am.

How did you get into colorectal surgery?

>> Mentorship.

Really?

Yeah, I started general surgery residency.

And on the first day, one of the colorectal surgeons paged me and said, come into the operating room.

We have something cool for you to be a part of.

I said, man, I like this guy, Doctor James McCormick.

Shout out to him.

And since that time, I had just, you know, he really encouraged me to consider colorectal surgery since it's such a great specialty.

And here I am.

>> Welcome to the path of truth, Doctor Parikh.

How did you get into obstetrics and gynecology?

What was that like?

Belt light bulb moment.

That said, this is what I want to do.

>> I think it's every med student.

When they see their first delivery, they see that transformation, like in the delivery room, kind of pushes you to be in the most vulnerable parts of in a woman's health lifetime.

And so for me, that's kind of where my calling was.

I wanted to help women.

I wanted to be there during their most vulnerable time, vulnerable times.

And then I made my way more into gynecology and now into a surgical specialty.

>> There you go.

So, Doctor Parikh, what is endometriosis?

>> That's a great question.

So endometriosis is a chronic inflammatory condition of the pelvis in which the lining of the uterus.

You'll see those cells implanted into the pelvis or surrounding structures.

So the ovaries, the tubes, the pelvic sidewalls and in advanced stages even bowel and bladder.

It's a very debilitating disease, as you've kind of touched upon.

It can cause chronic pelvic pain.

It can impact infertility as well.

70% of patients that have chronic pelvic pain will have endometriosis, and up to 50% of patients that have infertility can have endometriosis as well.

>> Wow.

Are there different stages to this disease?

>> So staging is really used to between two surgeons or providers to discuss the state of the pelvis.

It has nothing to do with the patient's symptoms.

So someone can be a simple stage one disease where we have superficial implants in the pelvis and have very debilitating pain.

And then you have someone who has bowel involvement, bladder involvement, the ovaries are involved and have the same amount of debilitating pain.

So staging doesn't really tell me what a patient's symptoms are.

It just tells me surgically what the pelvis may look like on the inside.

>> So Hillary, Doctor Simon, we talk about patients that have chronic abdominal pain.

But there are a lot of things that can cause chronic abdominal pain.

Correct.

Tell me about how do you what are you listening for when that person comes in to see you that tells you something is going on like this?

>> I mean, obviously you think about your differential of chronic abdominal pain and, you know, a very common cause of that would be simply constipation that comes in lots of different flavors.

That, you know, specialists can help delineate to figure out the best treatment for what type of constipation.

You know, once we kind of rule out a lot of what causes abdominal pain, most folks will be given the diagnosis of of irritable bowel syndrome, which can come in diarrhea or constipation, but other things that can cause abdominal pain is diverticular disease, diverticulitis, inflammatory bowel disease, which is different than irritable bowel syndrome, which is Crohn's or ulcerative colitis.

And those are some of the top things that I see my patients in the office about.

>> So you're as a non female reproductive surgeon or physician, you know, you're not always going to be the first thing on your mind is going to be this.

How many times does a patient with endometriosis actually present to somebody else.

>> Most of the time.

And so Doctor Parikh and I were had the privilege of training together as fellows at the same time at the University of Louisville.

And I think early on we felt, you know, we became friends and we both had a passion for treating women.

And I think we've both learned a lot from each other from the perspective of our different specialties.

So now that she is, you know, diagnosing the majority of these patients, when I see patients that have I've checked off the boxes of these other, you know, symptoms and diseases that I usually see people for.

My antennas are up more often in younger women that this may be endometriosis.

And that's when we get together and.

>> Which is so this is a rather unique situation, at least as far as I'm familiar with, where you have a gynecologist and in this case, a colon rectal surgeon together.

What is the benefit of and is it a is it a true clinic that you two are seeing these patients together?

>> That's a great question.

So it is a very unique situation that thankfully we've been able to create at the university because this relationship is hard to foster at many institutions, and primarily because endometriosis is very difficult to diagnose.

And, you know, the gold standard of diagnosis is surgery is by laparoscopy or having some sort of tissue by diagnosis.

And so right now what we're trying to do is preoperatively diagnose someone and surgically plan for them if they have advanced disease.

And so through our partnership, we have been able to start a multidisciplinary clinic because we're seeing a lot more bowel endometriosis volume at the university.

And so you don't want to go into that surgery not knowing what you're going to come into as a gynecologist.

You know, our training is a little bit different surgically.

And so having now advanced skill set to do those surgeries and now having a colorectal surgeon that can identify bowel endometriosis has been very beneficial for our patients and outcomes as well.

>> So who is the typical person that has a diagnosis of endometriosis?

>> That's a great question.

So you know typically you have these young patients who've never been pregnant before, maybe had, you know, their first period pretty early on from the average age.

So maybe the age before 11.

And they have very painful periods.

And so endometriosis, you know, the idea of, oh, it's regular painful, you know, pain with menstrual periods.

That's normal.

It's not it's not normal period pain.

And I think a lot of women feel dismissed because there's just not enough education training in identification of endometriosis.

Oftentimes it becomes a diagnosis of exclusion versus something that should be on everyone's differential.

When we're thinking about why a patient is presenting with IBS like symptoms abdominal pain, chronic pelvic pain, those are all things that we should be thinking about.

>> From your perspective.

Now let's flip it around.

Yes.

So you're the colorectal surgeon.

So both of you are operating in the pelvis.

But you have a different perspective.

Correct.

So what is it like and what's the benefit of having you there in the clinic.

>> Yes.

So together most patients when after they've undergone their transvaginal ultrasound potentially a trans ultrasound.

These are modalities that we're working on to, you know, gain more information before we plan a surgery.

Is the question of how is bowel involved and will it need to be taken out or resected.

And if it is, will someone end up with a forever or temporary ostomy bag?

That is everyone's biggest fear.

And we were both we I think we both discussed that we were getting a lot of the same question and we said, why don't we just meet these these patients together?

>> But how often does bowel involved in this?

So yeah, admittedly you have a skewed population but correct.

>> So let's just take a step back.

Right.

So like what are the different types of endometriosis.

Superficial endometriosis is when you have just an implant on what we call the lining of the pelvis or the pelvic peritoneum.

And it doesn't really penetrate very deeply, but less than five millimeters.

And then we have deep infiltrating endometriosis, which affects up to 37 patients, 37% of patients who have endometriosis.

So 1 in 10 is what the numbers that we know of reproductive age women.

Of those, 1 in 10, 37% of patients may have deep infiltrating endometriosis.

And that's when we have endometriosis that involves bowel, bladder, deeper structures.

We have ovarian endometriosis or the ovarian endometrioma, which is the cyst of the ovary affected by endometriosis, and then the adenomyosis, which is the cousin of endometriosis in the muscle layer of the uterus.

So yes, at the university, our numbers are a little bit skewed because we see an influx of a lot of different types of endometriosis.

But of the 37% of patients that have deep infiltrating endometriosis, 30% of those will have perhaps bowel endometriosis and of different degree of bowel endometriosis.

>> Correct.

>> You were kind enough to bring with you an ultrasound.

>> Yes.

>> And I want you to take us through this because this is how you would making a diagnosis of somebody with it.

So tell us, what are we seeing here on this ultrasound?

>> Yes.

So we're going to go through a normal ultrasound.

What I'm seeing is a uterus.

Its normal shape.

Normal size.

It's sliding which is a great sign.

This is a normal appearing right ovary with normal amount of follicles.

Follicles are small cysts that have eggs in them and it's sliding.

These are all good signs because that tells me that we're not really seeing adhesions or scar tissue inflammation in the pelvis, and things are not stuck together.

Uterosacral ligaments, those are the ligaments that support the uterus and the vagina in the pelvis.

And that is we look at that because that's a very common location for endometriosis.

And here we're taking a very close look at the area between the bowel and the bladder and the colon itself.

And this is a common location for deep infiltrating endometriosis that involves the bowel.

>> So what then, are the complications.

So when you have this so when you see these little red dots and all this sort of thing, this is endometriosis.

>> Yeah.

So the most common symptoms are chronic pelvic pain.

Untreated patients will continue to have pelvic pain.

And that pelvic pain can also vary.

Not all endometriosis looks the same.

We have patients who have stage four endometriosis involving the bowel and the bladder and have no symptoms, and we have patients who have one small implant which can cause debilitating type of pain.

So when we talk about complications, we're asking complications from the disease itself and complications from surgery from the disease itself.

You know, we're looking at pain symptoms, quality of life impacted and then infertility as well.

And left untreated, these patients will just continue to have those symptoms.

Surgery wise.

It's very dependent on the type of surgery you have and the type of surgeon you have.

>> Oh an interesting point.

I love that the way the type of surgeons patting yourself on the back, I think.

But before we get into that, because patients abdominal pain is a feature and admittedly women with abdominal pain are probably going to be seen more by gynecologists than they will be by some of the other surgical specialties.

But clearly you're seeing what are the reasons that you think some of your colleagues may be missing the diagnosis early on.

>> And I believe that when women have suffered from chronic pelvic pain for most of their adolescent and adult life, or whenever we're, you know, meeting each other for the first time, that likely their pelvic floor or the muscles that open and close to let urine out, let stool out, let things in and out of the vagina suffers, okay.

Whether that be a tight pelvic floor or a pelvic floor that just doesn't open and close correctly.

And that can oftentimes then cause trouble having a bowel movement, cause constipation, cause fissures, cause trouble with hemorrhoids.

And so when I see young women who I oftentimes start with the question of do you have heavy periods?

Do you have pain with periods or pelvic pain?

And sometimes and I think we're catching more of these patients when they come to see me for common, you know, rectal complaints.

And that way we can work together to see if they need to see us in our multidisciplinary clinic or doctor separately for a transvaginal ultrasound to further assess for endometriosis, and maybe get these patients in to see a pelvic floor physical therapist sooner, that can help with some of those pelvic pain.

>> How often do you make a diagnosis during a colonoscopy as part of an evaluation?

And what is it that you're seeing then?

>> So naturally, if I'm just doing a typical screening colonoscopy, it's very rare.

However, we have made it part of our protocol, mostly because I feel and are very passionate about the rising incidence of early onset colon cancer that yes, the typical screening age is age 45.

But younger patients, specifically in Appalachia are coming in with colon cancer.

So if we are planning a large abdominal surgery, potentially for endometriosis, and they are getting to close to the age of 45, or we just need to ask them about family history of cancer or colon polyps, that is a way to both do a colonoscopy.

The day before their surgery that we plan on having them do a bowel prep for anyways.

So one bowel prep colonoscopy beforehand.

Address any polyps for, you know, reduction of colorectal cancer risk.

And then in the area that we are concerned about bowel you know involvement based on the ultrasound I really slowed down with my scope.

And I blow up the the colon or the rectum and I deflate it and I blow it up.

And I really get a sense of, is this a rigid bowel?

Are there any invaginations or indents into the colon or abnormal inside lining of the colon?

And we have been pretty accurate in describing very deep bowel endometriosis.

So then after that colonoscopy, that day before their major surgery, we can truly say, this is what I anticipate happening in surgery tomorrow.

And that's what any human being wants, right, is to manage expectations.

>> I'm a little worried about you blowing bowel today.

So tell me about the treatment options right now.

>> Yes.

Let me just circle back to her real quick, because I think there is a really important point to be noted here, that if you speak to other endometriosis specialists, the school of thought is a colonoscopy, cannot diagnose endometriosis.

And while that is somewhat true, I would say that Doctor Simon and I have created our own method of diagnosing it with the colonoscopy.

And the reason for that is, unlike rectal cancer or colon cancer, endometriosis works from the outside in, not the inside out.

So even if someone was concerned about bladder endometriosis and had a cystoscopy where they did a procedure to look at the inside of their bladder, they may miss the lesion because it works from the outside in.

And so the school of thought is, well, if we have patients do colonoscopy, it's going to be missed because you may not see it inside the bowel.

>> Okay.

So that's another good reason why you have this teamwork going on.

Yes I think that's great.

So now you've made this decision.

You've treated them like Puff the Magic Dragon.

So what are the options available.

>> That's a great question.

So treatment of endometriosis is really based on for me three things.

Symptoms goals in life.

So fertility status you know what are they.

You know do they want to retain their uterus.

Do they want a hysterectomy.

And then the last thing is so I said symptoms the quality of life and then their goals.

That's the most important thing.

And so if they're not bothered by their symptoms and it's an incidental finding such as like we find an ovarian endometrioma, we don't have to do anything.

We can just watch it, okay.

But if they are symptomatic and it is debilitating to them, they have chronic pelvic pain, they have fertility goals.

Then we have anywhere from medical management, which typically requires either hormone therapy or, you know, non non-narcotic medications like Tylenol, ibuprofen, which a lot of times doesn't work very well to anything from pelvic floor physical therapy, seeing pain management, those are all kind of medical treatments.

But ultimately I think surgical management of endometriosis has proven to be the best for especially those patients that are not responsive to medical management.

>> So when you're talking surgical, are you just removing the endometriomas or do you have to remove organs?

>> That's a great question.

So what I'm talking about is excisional endometriosis surgery.

And what that means is we try to remove as many of the implants as safely as possible with the skill set that we have.

So for instance, if someone has an ovarian endometrioma or ovarian endometriosis cyst, our goal is to preserve that ovary but try to remove the cyst itself if especially if fertility is the goal.

Now, in doing so, there are risks there can we can damage the ovary doing so, which means that we could damage the amount of eggs a person, a woman might have when it comes to endometriosis, on the pelvic sidewalls, on the uterosacral ligaments, we have to push some of those vital structures away, like the ureters, in order to safely remove.

But, you know, data has shown that excisional endometriosis surgery removing the lesions has better outcomes than burning the lesions, which is often known as ablation or fulguration of endometriosis.

>> When the decision is made, the patient has to have a bowel resection.

You know, Shivani's already mentioned that this is something that's coming from outside in.

Are you looking to do a segmental partial resection of something, or do you have to plan on a big resection on these patients?

How do you approach it when it's involving.

>> Yeah.

So it really is based on where the implant is on the bowel.

So if it's colon like the sigmoid colon which is the colon right before it attaches to your rectum and it's deep infiltrating.

And someone has expressed these, these bowel symptoms, then we do plan for a segmental resection.

If it cannot, if the implant can't be picked up and cut off, which is no known as shaving, if that's not safe to do, then we will do a small segmental resection.

This is different than a cancer surgery for bowel, where we have to get margins and we have to take a significant more, you know, significant amount more of bowel.

This is just a small amount with good tissue on either side of the implant and put the bowel back together.

Now I always talk with patients that the further we go down into the pelvis, the higher risk of that connection not healing appropriately.

And that's when we have to talk about the potential of having that ostomy bag or a diversion, which is, from my perspective, always temporary.

And that's always the goal.

>> Yeah.

What's new on the horizon as far as treatment or where you see things going as far as endometriosis?

>> That's an excellent question.

So you know, in terms of there's different categories right.

So first of all what how does endometriosis happen.

We really don't understand it.

There's many different theories about how endometriosis happens.

But we haven't been able to figure it out.

So there's a lot of research going into how endometriosis happens at a molecular level.

Is the vaginal biome involved?

Is the gut biome involved?

Are we born with all the endometriosis, or do we have cells in our body that transform into that endometrial tissue that causes endometriosis?

And then there's an area of how do we diagnose it before surgery?

And that's really where we've been really working on.

So ultrasound for instance, the ultrasound that I showed you, that is not a typical ultrasound that you will find at many other places.

And there is a you know, ultrasound has now really revolutionized the way we have approached endometriosis because we have developed a skill set on using different techniques to diagnose it.

And so right now, you know, through our, you know, through our society, we are trying to push for using ultrasound training, physicians training, sonographers and how to develop these techniques to identify it so that when we see patients, we can counsel them appropriately and talk to them about surgery, if that's what we're going.

And then the other area is biomarkers using different markers in our body to see if they are correlating with endometriosis disease.

There are now apps that are being developed to track symptoms for to help with the diagnosis of the disease.

And then the last part is intraoperatively.

And surgically, what we can use to help us dissect the pelvis.

>> I'm a patient that's sitting out there and I think I have endometriosis.

How do I get in touch with your clinic?

Is there a number to call?

>> What do I do?

>> That's a great question.

So of course the university website on the hospital.

You can find either of us on there.

>> What's the number to the clinic?

I want to call the clinic, I want one.

>> Stop.

My clinic.

>> Is (502) 583-8303.

>> It's amazing.

I know that number better than you do.

And they'll get you that.

And what about they want?

>> And our clinic number is 502588 and 4400.

>> And either a physician or a patient can refer themselves to you guys or physician of course.

Yes.

All right.

Well, thank you both very much for being here.

Thank you for having I appreciate it.

Thank you.

And thank you for being with us today.

I think that we all now have a better appreciation of endometriosis as many manifestations, complications and ways to manage and treat it.

If you wish to watch the show again or watch an archived version of past shows, please go to ket.org Waterworks Museum.

If you have a question or comment about this or other shows, we can be reached at KY.

Health at ket.org.

I look forward to seeing you on the next Kentucky Health.

And I want to tell you, this is a rather unique opportunity for patients that think they may have a problem with endometriosis.

They have two specialists in the clinic at the same time seeing them.

I can tell you that the results are always going to be good, especially when you have two people that's dedicated to this.

So if you have a problem, talk to your doc.

Talk to the folks at UofL about the Endometrial Clinic.

Thank you very much.

And see you next week on Kentucky Health.

>> Kentucky Health is funded in part by a grant from the Foundation for a Healthy Kentucky.