Unveiling Advances in Endometriosis Care: Dr. Mona Orady, MD, Insights on Surgery, Adhesions, Early Detection, and Education

Speaker 1:
0:03

Welcome to Indobattery, where I share about my endometriosis and adenomyosis story and continue learning along the way. This podcast is not a substitute for professional medical advice or diagnosis, but a place to equip you with information and a sense of community, ensuring you never have to face this journey alone. Join me as I navigate the ups and downs and share stories of strength, resilience and hope. While navigating the world of endometriosis and adenomyosis, from personal experience to expert insights, I'm your host, elana, and this is Indobattery charging our lives when endometriosis drains us. Welcome back to Indobattery. Grab your cup of coffee, your cup of tea or your beverage of choice and join me at the table as I continue my conversation with Dr Mona Arati of the Arati Women's Clinic. This episode is packed full of information, so come join the conversation. This is where we left off.

Speaker 2:
0:57

Thank you for joining us. In terms of the adhesion piece of it, that's a whole another piece I want to talk about. I actually just created an entire session at the Society of Laptoprescopic Surgeons conference that I just organized, just on adhesion prevention. I'm giving a session in Europe next week. Actually, I'm flying to Vienna.

Speaker 2:
1:14

I'm giving an entire session on adhesion prevention, especially in fertile women, because a lot of people don't talk about this, but adhesions can have a huge effect on women who are still wanting childbearing. It can affect their fallopian tubes and block their tubes. It can cause pain. It can cause shifting of the uterus. A lot of them already have some adhesions from the endometriosis. The question is how do we minimize reformation? As I said, it would be a whole lecture. I gave a whole hour lecture at SLS about all the techniques that I use to minimize adhesions. But, to be very brief, number one minimizing the surgery that I do to make sure I only touch what needs to be touched, meaning I don't sit there digging around. I pick up the endometriosis lesions, I excise it using the least amount of energy and the least trauma as possible, even if that means using a laser to actually cut out the lesion. It's less traumatic than using monopolar energy or monopolar scissors. I use a laser a lot in endometriosis surgery, using microlaparoscopy when I can, using sharp dissection when I can, minimizing tissue trauma, minimizing bleeding because blood can cause adhesions and inflammation.

Speaker 2:
2:24

My surgeries and everybody knows this, I don't like to see blood ever. They have to be completely dry, perfectly hemostatic at the end. It has to do everything. You rinse everything really clean, then using agents like ADAPT, which is an adhesion prevention solution that coats everything and prevents things from sticking together. It's like a syrup that covers everything and coats it so that things don't stick together. It makes everything slippery so that you don't develop adhesions.

Speaker 2:
2:53

When I do procedures where I elevate the ovaries, I'll basically suspend the ovaries away from the area that I dissected or cut out endometriosis for three or four days until that area heals over and then I'll cut the string and release the ovaries so that when they come back down, the fallopian tubes and ovaries were not in the area that's healing so they don't develop adhesions around them. There's a lot of techniques that I specifically do and I teach to prevent adhesions, because the majority of my patients and I think the majority of endometriosis patients have not yet had children and you don't want to affect their ability. You want to preserve their fertility Adhesion. Prevention is a big part of that. It's also a big part of preventing pain and things like that. I've seen patients where I've re-operated on who had surgery somewhere else or had someone else do surgery, and you go in and it's a complete plastered mess of everything stuck to everything. How is that not burning? That's painful just to look at, let alone to actually experience.

Speaker 1:
3:48

I think that's the problem with endopatients, though, specifically is sometimes we think, oh, the endometriosis is back, but that's not always the case. It can also be adhesions from the surgery and that doesn't necessarily mean just ablation surgery with a general GYN. That also means that can happen with even other surgeons. I think it's more different.

Speaker 2:
4:08

Sometimes I wonder because a lot of people ask me what my recurrence rates are. And I've been looking because I've been in San Francisco now for over five years and I've done over a thousand surgeries In the literature. If you look at the literature, the recurrence rate is supposed to be like 40% in five years or something like that. For endometriosis. I've done over a thousand surgeries and I've only had to go back in on maybe five or 10 for recurrence.

Speaker 2:
4:33

My recurrence rate is I don't want to say what it is, but it's much less than 40%, probably less than five or 10%. I'm wondering is it because I'm so diligent about adhesion prevention and when I do go back in on those patients, they don't have adhesions? They literally have recurrent endo that I can see and remove. It's not adhesions that caused it in those patients. Even the general surgeon that I work with sometimes will leave rectal endo and do it later after they've had their baby. They'll go in and they'll be like where are all the adhesions that are supposedly have formed from the lab?

Speaker 2:
5:05

I've had general surgeons that are like what do you do? What's wrong with your patients? Why do they not have adhesions? I think that's a big part of something that I'm hoping will talk about more in the endometriosis community, because I think surgeons some of them are kind of blasé about it and they think, oh, adhesions are inevitable. I don't think they are inevitable. I think that we can do what we can. I'm not saying no way you're going to develop adhesions, but I think we have to work really hard to minimize it.

Speaker 1:
5:32

It's more about making sure that you complete everything within the surgery, the full care, not just exercising Well that you're thinking about it.

Speaker 2:
5:41

You're thinking about the future. It's not about this surgery now. It's about what happens five years from now. What happens 10 years from now? How is this going to look in a year? How is this going to look after healing? What's going to happen when this patient wants to get pregnant? You have to think about the future, not just the here and now. I think, as a surgeon, that's really important.

Speaker 1:
6:01

I feel like that's a big part of why we get confused about reoccurrence rates is because we think, at least from a general population standpoint and I'm speaking only from what I've experienced with people talking to me about it is just that the confusion between what is actual reoccurrence and what is actual adhesion from a surgery, it's a very confusing thing because they can both be pain generators Absolutely and that's where I think can we be better surgically to prevent some of these pain generators by preventing some of the adhesions.

Speaker 2:
6:41

I absolutely think there is, and I think we have to at least try, right Like I do think that patients should ask their doctors, like what do you do to prevent adhesions?

Speaker 2:
6:52

Or just do the surgery and and, and I don't know, I don't want to, I don't want to. You know, I'm sure most doctors do something, but they have to at least have it in their mind, right, right, you know you have to think about energy, you have to think about tissue trauma, you have to think about bleeding, you have to think about adhesion barriers, you have to think about things like suspension and right, and you know, I was talking to one of my good endometriosis colleagues, who's from Greece, who actually taught me about Varian's suspension technique way back when, many, many, many years ago, and I was talking to her about it at SLS, because she saw that I do that. She's like, wow, I do that. You know, this is you, you operate the same way like me. Because I was showing some videos and I'm like, yeah, well, you know, you know, vicki, I learned a lot of this from you. It's, you know, it's a lot older than me and she's been doing endometriosis surgery for, you know, 30 years or something like that. And she's like, yeah, but you're there, a few people still do what I do. And I'm like, I know, but why? Why is that? And I think it's just something, hopefully, as we're talking more and things like the endometriosis summit. Sls is a great conference in the IPPS, which I also really admire, the International Public Pain Society. Doctors are talking more about it and we talked about this.

Speaker 2:
8:02

I think endometriosis doctors should be like the GYN oncologist, like why is there a GYN that specializes in cancer and there isn't a GYN that specializes in endometriosis, when endometriosis in some ways can be worse than cancer to treat? Yeah, oh it. You know. A general OBGYN Honestly should not be operating on endometriosis, in my opinion, or they should. They should know what their limitation is. Go in, put the camera and diagnose it. Don't touch anything. Take the fixtures and then send them to the specialist, because as soon as they start touching things or burning things or cutting things, you can cause those adhesions that then later on I'm having to deal with and try to prevent from reoccurring, and that becomes more difficult. It's more difficult to prevent adhesions once adhesions were already there.

Speaker 1:
8:50

Right, prevent adhesions when you're you're just doing surgery on someone who didn't have adhesions before, right and then the other part of that too is that it's much harder for the patient long term to get a good quality Excision and get all disease out, because it's all mingled within that and then your organs and other pelvic components are compromised even more Long term because it affects the nerves, it affects the muscles, the bowel is kinked, everything is shifted and trying to unravel, then put everything back to where it belongs.

Speaker 2:
9:25

Number one takes a long time, but number two, you know, you end up with a lot of raw surfaces which can then form adhesions Right, and so the more we think about prevention. And that takes us to the next step. You know why aren't we diagnosing endometriosis when patients are young, so we can treat it early, before it becomes the stage four? Frozen Pelvis infertility patient.

Speaker 2:
9:45

Yes why can't? I know that when patients are in their teens. Most patients have symptoms in their teens. Right, my mini micro laparoscopy is a wonderful thing for that, if I can do a laparoscopy and tell Someone you have endometriosis and you're 12 years old, or 13, or 14 or 15. And these are the things we can do to minimize inflammation and to minimize Spread of endometriosis and to minimize progression and let them be aware.

Speaker 2:
10:08

Like a lot of patients are like I wish I knew I had this. I would have frozen my eggs when I was 25. Hmm, waited till I'm now 38 and trying to get pregnant and I have minimal eggs left. And now, what do I do? Right, they have an awareness that they have this disease and they can make those life decisions with information. Right, with knowledge. And if we don't diagnose them early, they then they're coming to you shopped at 40 that they now have this and they have one embryo and it's like, oh my god, how are we gonna get her pregnant?

Speaker 2:
10:36

Yeah, and it's very, it's emotionally draining when you see those patients day in or they out. Honestly, because it's just tragic. Because you go back and you ask them and you're like did you have painful periods? Yeah, I was passing out in college or I was, you know, throwing up in high school. How come nobody knew that these symptoms are endometriosis? Right, right, no, I'm starting at it. How do people not know that dysmenorrhea is painful periods? But that happens before the period. Which hunter? That is my diagnostic key for endometriosis. Endometriosis pain starts one or two days before the period. Hmm, this menorrhea or painful period starts when you're bleeding. That's dysmenorrhea. You can't call pain one or two days before the period dysmenorrhea. They're not having a period. That is endometriosis. That's almost 100% diagnostic for endometriosis. If you have pain the day or two before the period and then as it progresses it gets worse, three days before, four days before, five days before, seven days before from all the way into the period from the whole month now.

Speaker 2:
11:36

Yeah, I mean that if you go back their history, you can actually see that it's literally the same story every single time.

Speaker 1:
11:43

Then how do we diagnose earlier?

Speaker 2:
11:45

Through, through discussion, through history, through exam, through ultrasound, through the. The other one, the tilted cervix right. Oh, I have a tilted uterus in our tilted left is turned tilted right, it's shifted. This and that I mean. Do you know that we're all born with our uterus in the middle, just like our heart?

Speaker 2:
12:03

is on our left side and our liver is on our right side and our gallbladder is over here and our appendix is over here. The uterus is in the middle. That's how we're born. That's how it was created. If it's not in the middle, when we're a teenager or when we're in our 20s, something moved it. Guess what moved it? The endometriosis moved it, the fibrosis moved it.

Speaker 2:
12:25

If your uterus is tilted, I almost guarantee you have endometriosis. It boggles my mind. I talked to the patient and I said oh, your uterus has shifted this or that. Oh yeah, they told me when I was a teenager that it was hard to get a pap smear because they couldn't find my cervix because it was shifted. There was no clue in that. Oh my God, the cervix has shifted. There's something going on. Maybe it's endometriosis. This is one thing that I like when I talk to internal medicine and family doctors which I'm now trying to educate all the family doctors and internal medicine and pediatricians in this area when I tell them that it's almost like their mind is blown. Oh my God, I see this so often. How did I not know that this is a thing?

Speaker 1:
13:04

Well, it's because no one talks about it. In medical school I've talked to so many doctors that are like we spend maybe 30 minutes to maybe a day and a half on endometriosis. Maybe the literature just isn't there, it's not at the forefront of their mind. They're thinking what they learned in school is IBS and they're learning this. Just happens to be this way.

Speaker 2:
13:29

This is how it grows. These are the things like if people are more aware of these symptoms. The signs and symptoms, endometriosis. We can get a diagnosis sooner. People are aware that mini-microlaparoscopy exists. That are ways that we can prevent endometriosis progression. Why are we not treating them? Why do I keep seeing these debilitated 16, 17, 18 year olds that started having symptoms when they were 11? Right, that now can't function, can't go to school. This is going to affect the rest of their life.

Speaker 1:
13:59

How do we decipher, like, when is it time for us, as parents, to look at the situation and say, okay, it might be time for surgery? Is there a process to take in order to see, okay, they're starting to feel this pain now? Do we do hormonal suppression or do we do surgery? Or do we like what is a good step for those of us who have girls that will potentially and likely deal with endometriosis? I mean, I'm starting to see certain things in even my nine year old right now, that I'm like girlfriend. We got to watch this.

Speaker 2:
14:36

I mean honestly, it's the same as an adult. So you know, when I when I see patients with endometriosis, I tell them there's like basically four reasons to have surgery. The first one is debilitating pain. You can't function and it's just nothing's working. You can't leave them like that Right. They're debilitated, they can't function. No medication is going to get them out of that without surgery. You can try, but most of the time it'll fail and end up with surgery. The second is severe anatomic distortion.

Speaker 2:
15:03

So I've operated on 18 year olds, 19 year olds, 16 year olds who already have a 10 centimeter endometrioma on their ovary. I'm like I can't leave that there. It's already destroying most of their ovary. I have to save their ovary and so for those people and then surgery is an answer and you can talk about how you approach it. You know, do you do medications first, try to shrink it. There's all sorts of things that we can discuss.

Speaker 2:
15:28

The third one is they've tried hormonal management. It's not working. They don't really want to go to the next step of hormones or they don't want to stay on hormones unless they know for sure 100% they have endometriosis. So more for like their diagnostic capabilities that we want to do surgery. The fourth reason is fertility, which, if someone is already having impacted and usually it's not a teen, it's early twenties their AMH is already being impacted, their FSH is already being impacted, they have fertility concerns, their tube is already dilated. Those ones I would rather do surgery on now. At least get the process stopped so that they don't keep progressing. Okay, everyone else, honestly, you could try to manage their symptoms, either medically or with physical therapy or bladder treatment or bowel treatment and anti inflammatory dice. There's all sorts of things we can do for teenagers. Not everyone will need surgery to at least delay the need for surgery. But we still need to diagnose them with endometriosis. We can't just say oh yeah, it's all in your head.

Speaker 1:
16:28

Go to therapy.

Speaker 2:
16:29

Go to therapy right, yeah. Which I mean. There's a place for it, for me as a teenager it was oh, you need to eat more fiber. You're constipated, you know. I'm like really, Because I don't feel constipated. I just feel like I'm going to die.

Speaker 1:
16:42

every time I have a period I'm like you know, it's kind of what we all feel, and to be dismissed as a teen, I think does perpetuate the mental health issues that we already faced with endometriosis and so when we're not believed at an early age or we think pain is just normal all the time, it's perpetuating something further on down the line. If we can address it earlier, even if it's in the mini micro laparoscopy, like it's important to understand our body, but do it the least invasive that we can and just yeah, and it's interesting.

Speaker 2:
17:20

It is interesting because I have a lot of patients that tell me like chronic pain patients who are now are like, literally in chronic pain all the time, even when I've now dealt with their pain. They have self doubt, like they doubt that they don't have pain anymore and they feel they tell me I wish I had been validated, like I wish someone had said yes, you have pain, because it's now. They don't even doubt that they have pain, like it's like they don't believe their own self, they don't believe their own sensations. And it's tragic because it's hard to take care of them, because you ask them do you have pain? And they're like I don't know. Yeah, maybe that's me half the time. Yeah, it's like I don't know. I've been living with pain for so long. I don't know what not having pain feels like you know, and that's tragic because it affects you.

Speaker 2:
18:04

It affects you in every single way and it's not. It ends up with those patients not even not just taking care of their pain symptoms. They ignore every aspect of their life, yeah, ignore their emotions, they ignore their needs, they ignore their desires, they ignore their dreams. And it's tragic because it's so hard to reverse it when it gets to that point. It is so hard, it takes years of therapy and years of treatments and years of self love and self care and affirmations, yeah, and it takes so much to do that and it makes me sad when I see that. And you try your best. But it's so hard because and that's what I mean when I tell you that you know, surgery doesn't fix everything Right. As a surgeon, it hurts me to say that because I mean I went into surgery because I love that you could fix it Right, throw medications at it, and I learned how to do endometriosis surgery because I love that I could go in and remove the disease and like feel that, oh my gosh, I fixed it.

Speaker 2:
19:01

But when I see those patients that you do the surgery and they're still struggling mentally, emotionally and in other ways, you know, sexually and in their relationships and in their love of life. It's heartbreaking, but just as good as when you do sit, when you do catch it early and you can treat people and people telling me every day I hear that you've changed my life. I'm a new person, you know, I'm a new woman. I now can travel. I now can do this. I now can pursue my career dreams. I now I'm pregnant with the baby that I've always wanted. I mean these, these messages that I get every single day. They're what keep me going, honestly, through this. The turmoil of the medical health care system that we're in, that we talked about earlier and, you know, keeping it pushed through and try to make this dream happen.

Speaker 1:
19:44

I feel like that's one thing that we have to acknowledge is that the health care system is not set up for excision surgeons to really help heal and bring quality of life back for endometriosis patients. I feel like it is set up almost to have them fail. The something that I want to highlight to everyone is the fact that if you're seeing a true excision specialist and endometriosis specialist, they work so hard and put so much out there with very little return for them personally other than your stories and your ability to heal in life. They're not out there being the next Jeff Bezos of the medical system. It is hard work and you're seeing trauma. You're not just seeing physical trauma. You're seeing the mental trauma, the emotional trauma, the financial trauma, because that's real in this system, right, and so managing that from a doctor's perspective.

Speaker 1:
20:47

I can't imagine how challenging that would be to see that day in and day out. If we can prevent that just a little bit by seeking care as teens when the symptoms start, so that the doctor can track it. Okay, we're seeing a little bit more change in you. Maybe we need to look at potentially having surgery in the next year or so. What ways can we keep you comfortable at this point. I don't know, I just feel like we would see less trauma.

Speaker 2:
21:14

We would, and even to be honest, like with some of my teenagers, just knowing that they have this and that there's an explanation and an acknowledgement of what they're going through is almost enough for them.

Speaker 1:
21:28

I can see that.

Speaker 2:
21:29

And then you try to treat them medically and surgically and all of that. But just having an acknowledgement because as a teenager you're going through so many termoils and changes and hormones and all sorts of stuff and you're just discovering yourself as a person, as a human being, separate from your parents, and to know that someone believes you or they have that acknowledgement of that you are suffering or that you are in pain, I think is a huge thing that we should not minimize. I'd rather over diagnose teen ando than misaffuse you and make them feel traumatized.

Speaker 1:
22:03

Yeah, that's huge though I mean. I look, I think back to when I was a teenager and all the things that I went through and I didn't I mean no one. I didn't even hear the word of endometriosis until I was married for about a year and had a kidney stone removed and it was then that they found an endometrioma. And that was the first time that I had ever heard when I went to my OBGYN, who said immediately she's like I'm 95% sure that's an endometriosis, I'm pretty sure you have it, because she heard all my other symptoms that went along with it. And I think it was that at that point that I realized that I wasn't normal in my cycle, I wasn't normal in my pain, but then I felt really abnormal because I was given this diagnosis that I felt like was super rare because no one had talked about it to that point.

Speaker 1:
22:52

And that's also, I think, what you're trying to do is you're talking about the whole person, not just surgical, you're not just talking disease, you're talking the years of trauma. How can we get you help Walking through that? I think something that we've underestimated is the ability for our specialists to walk with us in complete healing, and that's something that you and I have talked about a little bit. It's just, this is step one surgery. Step one diagnosis. Step one like half step, yeah, half step, but that complete picture. Because now I'm like putting my pieces together and I'm like, mona, where were you? Huh, like 30 years ago, yeah, 30 years ago I was like I was in med school.

Speaker 2:
23:38

I think I was in college.

Speaker 1:
23:44

Yeah, but I just feel like if we can help teens navigate this disease better, talk about it and it not be so unattainable for treatment and care, could we potentially see a better healthcare system.

Speaker 2:
23:59

That's the thing right, can we help them for the future? The healthcare system is a whole other bottle of wax. Honestly, the healthcare system. I'm Canadian, so I came from the Canadian healthcare system and I came from the Canadian healthcare system until 2001 when I graduated medical school and I came here to do my residency because my family had moved to the US and I was appalled, like and I've been appalled and the feeling of oh my God, this is a disaster has only gotten worse. It is the healthcare system in the United States is failing us.

Speaker 2:
24:31

It's failing doctors, it's failing patients, it's failing everybody and it needs to be fixed. But honestly, like I've had this discussion with other doctors, it almost needs to completely fail and just fall apart so that we can rebuild it from scratch. And it has to stop being a business. It can't be a money maker for insurance companies and executives that make millions of dollars off of healthcare. The money has to go into one pot and we actually spend it on patients and doctors and caretakers and nurses and all the people that are actually doing healthcare. Why all the money going to the executives, the business people? They can't do that.

Speaker 2:
25:16

You can't it's just it can't continue that way. This is not a business. We should not be profiting hearing off of people being ill.

Speaker 1:
25:25

No.

Speaker 2:
25:25

That's a whole, nother philosophical discussion. But it is tragic and I see it every day and when I have to fight 10 times a day and I have to do peer-to-peer calls to insurance companies to get an MRI on a patient.

Speaker 2:
25:39

Because I work a lot of MRIs and every time it's like an argument why does she need an MRI? Well, she has endometriosis. Well, if so, it's like well, I need to see where the endometriosis is so I can do her surgery. Well, and then I get the. Oh, endometriosis isn't treated by surgery. It's like where were you for the last 20 years? Like, are you talking to a person who's like pediatrician or like some weird doctor on the other end, who isn't even a gynecologist, who's telling me that I don't need an MRI? It's like I'm the doctor I need an MRI. Approve the darn thing. And sometimes it takes like an hour of conversation for me to convince someone to let me order an MRI on a patient. Can you believe that I spend an hour of my time on the phone trying to approve an MRI? That's nice, or peer-to-peer discussion or whatever it is that I'm ordering which you could have done A whole surgery.

Speaker 1:
26:30

A whole surgery. You could have given care to someone that desperately needed it in that timeframe. That's insane to me.

Speaker 1:
26:40

That's insane to me. Well, and I think too that something that we had talked about prior to coming on is that doing surgeries can be preventative care from years and years of trauma From seeing this doctor, that doctor and another doctor oh wait, they all didn't believe you, so let's send you to the psychologist. And now the trauma is even tenfold on that. So when we're talking teen endometriosis, early diagnosis, early treatment, it's really early preventative care for what could potentially happen and the trauma that could potentially happen further on down the line.

Speaker 2:
27:16

Yeah, these patients can develop depression, they can develop lifelong disability, they can be completely absent from the workforce. I mean, their entire life is affected. Patients who spend hundreds of thousands of dollars on fertility treatment that could have been prevented, where we could have done surgery and they could have gotten pregnant. Like why? Why are we spending all this money? And we could actually prevent all of this excess expenditure on antidepressants, you know, disability, fertility treatment, all of this if we treat endometriosis properly from the beginning.

Speaker 1:
27:48

Yeah, and that takes understanding the disease properly from the beginning, yeah, which is also that's another conversation, but that is another. That's a whole nother ball of wax that we could really melt on that one. Huh, I mean I don't. I don't know if there's any easy solution at this point, but I do think that what you're doing is so important because the surgery that, like we've said, that's one piece of it. How do you follow up with patients and walk through them past that surgery and what should be? I don't know about an expectation, but what should be something that doctors should be doing with their patients post surgery that you find beneficial? Yeah?

Speaker 2:
28:28

I mean, we don't. We talked about this. I'm not just a surgeon who does surgery and then send you back on your merry way and that's it. We're done. Like for me, my patients are mine for life. I will follow them forever, make sure their pain stays away. If they want to get pregnant, they get pregnant. If they have bladder issues, we've treated, address those issues. If they have GI issues, that we've addressed those issues. If they have mental issues, that we've addressed those issues. That they get the physical therapy they need, they get the bladder treatment they need, they get the fertility treatment they need. And following them to make sure that the endometriosis doesn't come back. And if it does come back, how do we treat it? Like to me, it's not just, I'm not just a surgeon who does surgery and that's it.

Speaker 2:
29:05

For me once an endometriosis patient or a patient with other diseases fibroids, pcos, whatever I do all menstrual disorders right. Postmenopause too, I treat menopause patients. I treat teens. I do pediatric gynecology. I'm also trained in pediatric gynecology. So for patients who are going through pubertal problems or have malaria and anomalies, the double uterus, absent vagina, all of that, I treat all of that. So for me, a patient is not just a patient.

Speaker 2:
29:30

I'm treating one disease, they're an entire person that I will be their doctor for life if they want me to be, and so it's so much the diagnosis beforehand coming up with a management plan that fits that patient at that time. What is it that their goals are? And I work with that. They tell me what they need and then I work with how to get them to their goals.

Speaker 1:
29:50

And then after surgery.

Speaker 2:
29:51

It's the same Patients who have painful intercourse dysparunia. Sometimes doing the surgery is not enough. You have to treat the vestibulitis, you need to treat the vaginismus.

Speaker 2:
30:00

You need to treat the psychological trauma of being afraid of having sex, right, right, you need to do therapy, like there's the. I always tell patients with who especially the ones that are really bad, where, like, they haven't been able to have sex I tell them it's going to probably take me a year to get you to have sex, even if I have the surgery. So we're still going to need treatment post-op to get you to that point where you have pleasurable sex, and it may take six months, it may take a year. Right, it's going to be an instant fix. It's not because there's a lot behind that.

Speaker 2:
30:27

Same with bladder issues. You know the patients that come to me and they're like, oh my God, I wake up 12 times a night to pee and I'm like, oh my gosh, how do you sleep? Right, you get to sleep. And again, I tell them the surgery will help, but we're still going to need to do some treatment post-op and it's going to take maybe six months or a year to get you to the point where you can sleep through the night.

Speaker 1:
30:45

Right.

Speaker 2:
30:46

And because it's not just one. It is one disease but there's so many manifestations and so many side effects of that disease right.

Speaker 2:
30:54

You have to treat Right and every patient is different. So my point is a surgeon shouldn't just drop a patient afterwards. You do their surgery and they go away. And that's why I do a lot of telehealth right, because I have patients from all over the country and I try to manage them from remotely. Between me and my physician assistant, we come up with a management plan when they leave and then we keep checking in. So I usually check in with patients that have active problems. I usually check in every six weeks, wow, post-op, until they're better, and then, when they're better, we go to six months and then, with they're really good and they're doing great and awesome, then I check in once a year with them. That's amazing. So it's you know. I do check in with patients, you know, pretty frequently.

Speaker 1:
31:38

Yeah.

Speaker 2:
31:38

Up until they get to their goal, yeah. And once they reach their goal and they're like, yeah, I'm good, dr Roddy, let's just they're not like, okay, I'll see you in a year. And then usually they're really sad by that point, because they've seen me. What do you mean? I'm not going to see you for a year, I'm like well you're good, right, you need anything from me. They're like, yeah, we're great, but we're going to miss you.

Speaker 1:
31:55

But can we go have dinner now?

Speaker 2:
31:59

I'll bring cookies to the office or something like that yeah, just to stop, but yeah.

Speaker 1:
32:05

That's amazing. I feel like that kind of genuine care. It helps with healing. The more informed a patient is, with realistic expectations, the better their outcome long term is. And that's something that I feel like we really underestimate is the realistic expectations of what surgery is, of what endometriosis is the care, everything else and I think you know you've talked about this before but even in your protocol, whether it's hormone based, hormone suppression you really set the expectation Okay, here are all your options. If this is your end goal, here's all your options, here's what each of these options do. That's called informed consent. And then you allow them to pick what's going to be best for them, and I think that that also lends to a better outcome because they're not as traumatized.

Speaker 1:
32:56

Well, my doctor didn't tell me that, or my doctor didn't tell me this. And then going into surgery, post surgery, I think it's just as informative to say you're not going to be 100% post op, you're not going to be 100% even in a couple weeks. It's going to take time. Let's figure out, let's unravel some of what's going on, and I just feel like that's a really hard thing and something that all of us not all, I would say, a majority of us endometriosis patients who have had multiple surgeries, specifically really struggle with that expectation of like okay, we've had this amazing excision surgery, but I'm still feeling this pain, I'm still feeling this fatigue, I'm still having issues with my hormones and we don't feel the support that we need walking through that.

Speaker 2:
33:45

Yeah, and I tell my patients especially the fatigue aspect. I mean, a lot of them, people are patients with chronic fatigue. They have the surgery, they will lose that chronic fatigue will go away, but it can take maybe six months, yeah, and then feel so much energy and like I feel amazing. But I always have to tell them your body has to heal from that surgery. And then the other patients you come in and they're like oh, I have anemia, I have to have surgery. Some of them are actually surprised when I'm like, well, you don't have to have surgery right now, we can try physical therapy, bladder treatments, the yada, yada, yada. If that's your goal is not to have surgery right now, we can do other things and then if we ultimately end up having surgery, yeah, then we have surgery. But I don't, like I don't want patients to come in thinking, oh, this is my only option. I'd love to give them other options and ultimately we may need to have surgery, but I don't like push the surgery on them right away, Like oh yeah, you have a note.

Speaker 2:
34:39

you have to have surgery, not necessarily, not right now. You may have to in the future, but not necessarily right now.

Speaker 1:
34:45

Yeah, I mean gosh. That is so good to hear, I think, for people and it does give hope to those that feel that way of like I just need to have surgery and I'll be all better, maybe, maybe some of this can be preventative too of like the pelvic floor dysfunction and making sure that we care for that even prior to surgery, to see if surgery is needed at that point I mean, don't get me wrong.

Speaker 2:
35:12

So a lot of the patients are old right after surgery. I mean, they have surgery and it's amazing, all of a sudden they have no pain and they're pregnant and they're every other goals come A lot. A lot of patients are like that. But for patients with chronic pain specifically, who've had the disease for a long time and they have a lot of the other effects the bowel problems, the bladder problems, the fatigue, the pelvic floor tension, the neurologas and all of this that takes a long time to reverse. It took a long time to happen. It's going to take a long time to reverse and I like it very, you know, it's great when it does reverse really fast and at three months are like I feel amazing, I'm like great, wonderful. But I don't like to give that expectation Right.

Speaker 1:
35:51

Oh and that's and I think that that's staying within the bandwidth of like knowing that you can't solve everything in 24 hours. That would be amazing, though, if you could figure out a way to do that, some Star Trek way of doing that, to make us just wipe it off clean. That'd be amazing when?

Speaker 2:
36:09

I tell patients, I mean, when we get pregnant, it's like, oh well, we're going to have a baby. Guess what? Nine months later, you forget the baby. It's not like the next day you have the baby. It takes time. It takes time Right, it takes time to bounce back from that.

Speaker 2:
36:21

It's like you know, it takes you like frickin, like I mean. They call it the fourth trimester for a reason. There's like at least 12 weeks. You still don't feel like a normal person. Actually I would argue it's like 12 years. But anyway, 12 years it takes time, you don't? You know, everything takes time it doesn't.

Speaker 2:
36:39

It's not something that's instantaneous. What is amazing to me, though, in terms of fertility treatment though, is it does quite amazing how fast people do get pregnant after surgery. Usually, it's within three months, which is, like to me, mind blowing, yeah yeah. Like especially fertility patients who, like, haven't been able to get pregnant for six years and then a month later they're pregnant. That amazes me. I see that all the time, and every time I'm like wow, that's amazing, that's awesome, awesome, and that has to keep you going.

Speaker 2:
37:11

That has to keep me going, and it's something that's really sad, because fertility patients should know that that's an option, like they don't. I don't know why it's still touted that oh, if you have infertility, you have to do IVF First. And that's yeah, and it's like, why do we spend all this money on IVF? And yes, ivf can get some of them pregnant, but a lot of them fail.

Speaker 2:
37:31

And going through failed IVF after failed IVF after failure is heartbreaking. Yeah, it sucks as an emotional tool and you're pumping yourself full of hormones and you know injections and it is so difficult. Yeah, I went through one IVF cycle personally and I couldn't do it anymore. I was like no, I can't. I, you know, I and it and it, and it and it and it. And some people who do it over and over, I mean kudos to them, I mean you are a trooper, but why? Why are we putting them through that before we diagnose them? Why don't we diagnose them? Try the conservative surgery method first, right. If they need IVF, and they need IVF, fine Right. But it just it's heartbreaking to me when I see patients who've gone through six, eight years of infertility and then that you do the surgery and they get pregnant. And it's like they come back to me and like why didn't anyone tell me this? And I'm like I don't know, just be happy or pregnant, like I can't answer that question for you, because they didn't know.

Speaker 2:
38:26

Cause they didn't know yeah.

Speaker 1:
38:27

Right, yeah, and and that I see that so many times and talking to people, I mean even in my own story I wish there were things that I would have known earlier.

Speaker 2:
38:37

Right, oh, all of us.

Speaker 1:
38:38

All of us are that way.

Speaker 2:
38:39

Don't you wish we could talk to our 20 year old self and say hey, by the way, in the future XYZ. You should do this. I wish. Right, I would have changed my life.

Speaker 1:
38:48

I'd be so much more wise, I know right, I would have avoided a lot of things along the way.

Speaker 2:
38:54

I've had a lot of love to go back and talk to my 20 year old self.

Speaker 1:
38:57

Right that would be amazing. I would love that, it'd be great, but we can't. And so now we have to. Now we take what we've been given and what we've walked through and help other people and we continue this journey of making sure that endometriosis is, first of all, understood correctly and defined correctly and taught correctly to those around us Right, and then understanding that it is. It is a major disease. It's not a period pain. It's not missing school for two or three days when you're a teenager. It's not infertility, it is its own thing that causes these other.

Speaker 2:
39:37

Yeah, and it has long-term consequences. Yeah, you know, it's not like it's just a one time thing. Like you know, sometimes I like I had my gallbladder out, I got gallstones. I had my gallbladder out as a teenager. Once it was out, that was it, it was done, right. Right, you don't have a gallbladder anymore, easy Right. This is not that.

Speaker 1:
39:54

No.

Speaker 2:
39:55

Not the same.

Speaker 1:
39:56

No, no, and understanding that, I think, is going to help future generations with seeking better care and treatment for this disease.

Speaker 2:
40:06

I mean, and hopefully, hopefully, even the medical community starts to realize that this is like cancer. It should have its own specialty. Yep, it just should. Menstrual disorders is not even just endometriosis. Endometriosis, fibroids, pcos, hormonal problems, like menstrual disorders is a specialty in itself.

Speaker 1:
40:26

Yeah.

Speaker 2:
40:26

And sometimes I joke like you know, it's always obstetrics and gynecology and it's like obstetrics is first, gynecology is like the problem child, right? Yeah, I can't explain that I've forgotten about and I'm like why does obstetrics get so much attention when you only spend nine months of your month life pregnant and you spend like 40 years menstruating, right?

Speaker 1:
40:47

Right, why? Why is?

Speaker 2:
40:48

that Right, you spend four years of our life menstruating. Every woman will have some menstrual problem at some point, right. A fibroid, a polyp, abnormal bleeding, an infection, whatever. But that's a hormonal issue. Right, every woman will have a menstrual issue at some point in their life. And we focus so much on the nine months of pregnancy, right, I'm not saying it's not important, I'm just saying why is gynecology the forgotten child?

Speaker 1:
41:13

Yes, and not to say that endometriosis is a menstruation problem in and of itself. It's a whole body issue. Right, like we see the diaphragmatic, we see the thoracic endometriosis. I mean it's everywhere, so it just typically will manifest during the menstruation cycle and that is a huge indicator for a lot of people not everyone, but a lot of people. That is a massive indicator as to something else is going on. It's not just a bad period, it's not just I can't walk during my cycle. It's not just I can't breathe during my cycle. There is something else going on in your body and typically people will notice it in their menstrual cycle. And I think that if we can acknowledge the fact that it is not just those things, it is something else causing these symptoms during that time, oh my gosh, let's talk to their schools about this, right, let's talk to nursing programs, pediatrics.

Speaker 2:
42:12

Why isn't it a sexual education class? Like everybody has sex ed class. Like, why don't we teach it endometriosis symptoms and sex ed class? Like, why not? Yeah, we don't know that passing out and throwing up during our period isn't normal.

Speaker 1:
42:24

No, yeah, through our nonprofit that we started here. That is a goal. Of ours is to get into the schools and talk about this more, educate young people about this disease. So we can talk for days. I know we could go for on for hours, but I just want to, if you want.

Speaker 1:
42:40

Yeah, we will. We'll have to do part two, but thank you so much for bringing light to something that we really haven't talked about much, and I think that we need to talk more about teen endometriosis, adhesion and the healthcare system and how that's designed. But thank you so much for taking the time oh, thank you and just being a wave maker through this whole thing. So I appreciate it, and until next time, endometriosis warriors continue advocating for you and for those that you love.