Dr. Shanti Mohling shares the details of endometriosis surgery, recovery, and pelvic floor therapy as important treatment options for patients with this condition.
Episode Summary
In this third episode of Fempower Health's series on endometriosis, Dr. Shanti Mohling, a minimally invasive surgeon, who devotes her clinical activity to patients with pelvic pain and endometriosis, explores the importance of excision surgery, the challenges of diagnosing and treating endometriosis, and strategies for managing its recurrence. She emphasizes the need for early detection, multidisciplinary approaches, and personalized care in improving outcomes for those affected by this complex condition.
Key Takeaways
Why surgery is the most effective treatment for endometriosis and how to find a doctor trained in endometriosis excision surgery.
Screening and early detection of endometriosis, especially in adolescence, to prevent more invasive procedures later in life.
Advantages of taking a multidisciplinary approach to endometriosis treatment and healthcare in general.
Difficulties in diagnosing endometriosis, especially through imaging tests.
Surgery's role in improving fertility, debunking myths such as pregnancy as a cure for endometriosis.
Benefits of pelvic floor physical therapy to manage endometriosis and pelvic pain effectively.
What the healing process of endometriosis surgery entails.
The complexity of healthcare for endometriosis patients and the value of raising awareness and understanding of the condition.
"I think a lot of disease that recurs is inadequately treated, and yet we call it recurrent. It's really just persistent, not recurrent is my guess." - Dr. Shanti Mohling
Related to this episode:
Resources for Endometriosis
Follow Dr. Shanti Mohling on Instagram
Learn more about Northwest Endometriosis and Pelvic Surgery in Portland, Oregon
Part 1 of 4: Innovations in Endometriosis Diagnosis, Pelvic Pain Management, and Patient Support
Part 2 of 4: Endometriosis Care, Treatment Options, and Patient Advocacy
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Transcript
Georgie Kovacs:
Endometriosis is near and dear to my heart since I have it and have been so in touch with the community, since I was diagnosed. I think it was 2014 when I learned that I have it. But I am a decade now. Yes. That's right. But unlike many women, I have, I guess, what some characterize as silent endometriosis because I don't have the obvious symptoms, but there are so so many who struggle. And it is a complicated disease and a very tight community, who has a lot of emotions and and views about this topic. And so, you know, this is part of a 4 part series because it is such an important condition to talk about.
Georgie Kovacs:
So before we dive into it, I'd love for you to share with us your expertise, in relation to endometriosis and anything else you would like to share before we get started in the in the discussion.
Dr Shanti Mohling:
Yeah. I think that involves a little bit of my giving you my background, which which, I started out well, I started out 40 years ago as a massage therapist. And so that informs a lot of what I later become became over all these years. So while I was being a massage therapist, I realized I loved anatomy. I loved working with people. And so I went back and did premed and then got into med school, went to med school, and became an OB GYN. And while I was training as an OB GYN in residency, I also had a kind of a focus on pelvic pain even back this would have been in the late nineties. And, then I worked in in private practice in a small community in Northern New Mexico, Taos, New Mexico.
Dr Shanti Mohling:
And really was a generalist. Delivered babies, took care of everyone, did their pap smears, did their hysterectomies, did delivered babies, ran a midwifery program, you know, did kind of the whole thing in a small community. And at age 50, I realized I was ready to go back, refocus, learn minimally invasive techniques. There was no robot when I trained. And so it was a very bold, unusual move to make as a 50 year old person. Being in a small community, you know, having a full active general practice, and then deciding to go back and focus. And and when I did my minimally invasive training that luckily, amazingly, I got a fellowship at that age. It was a very radical shift.
Dr Shanti Mohling:
So having been a doc for 15 plus years, 15 to 20 years, and then going back, I really brought with me a lot of wisdom from having cared for a community, a single community for so many years. And I happened to be in a fellowship where the training had a lot to do with endometriosis and excision and very rigorous, skill development to be able to dissect that ureters, go into all the deep avascular spaces of the pelvis, not be afraid of the diaphragm. And so this training I had in Chattanooga, Tennessee allowed me to totally transform my career. And I worked, for a few years in in Tennessee, as director of gynecology for a residency program and then moved to Portland. And ultimately, have spent the last 2 years entirely focusing on pelvic pain and endometriosis, working with Nick Fogelson, which is an incredible blessing. He's a truly gifted, kind man of integrity, a really great person to work with. And he really gave me the courage to just do it and say, okay. I'm gonna focus exclusively on this one thing because not enough people do.
Dr Shanti Mohling:
And in order to really do it well, you need to make that your full time focus, I think. We don't have enough people because the surgeries are as challenging as cancer surgeries. And we don't have a specialty training just for endometriosis. So I I fell into this. And in a way, when I look back at my earliest part of my career, it was all about pain then too. My my my deepest interest, and it just carried me through until, now I'm really kind of at the the full deep focus of my career.
Georgie Kovacs:
Wow, Dr. Mohling. That is, quite an incredible background. Like, wow. So It's different. Yeah. No. It is. And, you know, I guess maybe you could talk to us a bit about I mean, it is hard to find a doctor who is trained in endometriosis.
Georgie Kovacs:
And just because of what you had brought up, I'd love to even just start with the challenge with finding the right doctor and and why it's so important and just the dynamics of what you're seeing with your own surgical colleagues and the patients that that you're running across. Like, tell us this this dynamic, maybe, like, what's surprising to you about it that would help people understand as they're navigating this.
Dr Shanti Mohling:
Yeah. So so I, myself, prior to the last decade, I didn't realize that you were supposed to excise endo. I had no idea. And in training, we don't learn that. It's it's a in a way, a newer thing over the last couple of decades to even think about excising the disease. Right? I learned, like all OBGYN residents across the country, that you diagnose, you might burn a few things, you might biopsy maybe, Remove a cyst if it's in the endometrium an endometrium of the ovary. And then consider medications, birth control. You know, I learned all those very basic medications, burn a few spots, diagnose it.
Dr Shanti Mohling:
Not a lot we can do. That was what I learned, and that is what I think the vast majority of gynecologists learn in residency. And so there are these few cowboy and cowgirl pioneers who are saying, actually there is this one way that patients feel better. And, and it's, you know, it's, it's daring to go out and do this thing that isn't part of the mainstream education and trust that this is actually what should be done. And and so I get a lot of validation when patients write to me and say, I've never felt better than I have felt since you did my surgery 2 years ago, or I'm finally pregnant after 10 years, or I I can't, you know, I can finally digest my food and not feel bloated or any number of things. And so when I when I it's really, really helpful when I hear from patients because it reminds me that, yes, I am doing the right thing. Right? I see them in the short term and they seem to be thriving and doing better. But it's when I really hear long term from patients that I remember, oh, this is why I'm doing this.
Dr Shanti Mohling:
This kinda crazy excision of disease that that is not mainstream. Of course, all these patients with devastating disease, involving their bowel, involving their ureters, involving their diaphragm, their docs have no idea and have no idea what to do with it, because we aren't really taught. And and most of them, if they encounter really advanced stage disease, we'll send them to a GYN oncologist who will offer them hysterectomy and removal of their ovaries. And then, like I see over and over, invasive bowel disease, invasive urethral disease. I'm having to remove a section of ureter and get the renal docs to re implant the ureter. This is what happens if you leave the endometriosis and you remove the ovaries and uterus. The endometriosis still keeps going Even in the absence of taking hormone therapy. So it it definitely a revolution is taking place.
Dr Shanti Mohling:
And patients are pushing that that revolution to say, wait. What's been done for the last 50 years isn't working? Mhmm. These birth controls pills make me feel terrible. They increase my risk of certain other problems, and we need something better. And so those of us who are doing this are kind of few and far between partly because it takes a lot of skill to separate a ureter from disease or collaborate with someone to remove a section of bowel or cut a disc of disease out of bowel, or when it goes through the vagina, cut a hole through the vagina and sew it up. There aren't very many people who do that.
Georgie Kovacs:
So how does someone who well, I guess at maybe take us through this this diagnostic pathway to when they come to you. What is the best case scenario of what might happen, and maybe one some maybe a challenging scenario, something you've seen. So ideally, what should be happening, I'm assuming a woman has pelvic pain, goes to their OB GYN, and I guess that in and of itself is interesting because there's different ways to be able to assess whether someone has endo. Some say maybe they won't catch it. The only way you can really diagnose it is through laparoscopic surgery. And then there are these indicators like Receptiva DX, which looks at the BCL six and a few others. So, you know, I don't know how much you're involved with that side or have deep knowledge.
Dr Shanti Mohling:
I I don't use those diagnostic kit tools because, they aren't entirely useful to me. There's a certain a certain protocol and they're used primarily, I would say, by infertility specialists. And they and their use is very specific to finding inflammatory changes in the uterus that aren't only specific to endometriosis, but that are very helpful to guide regarding IVF. So that being said, when I think one of the root problems is that we aren't training people well enough these days on physical exam and everyone relies on imaging. And so over and over and over again, a patient with endometriosis is gonna have a normal ultrasound and often even a normal MRI. And yet, they might have stage 3, 4 plus disease, and they have normal imaging. I don't know if it's because of my unusual massage therapy background or or just having really focused on how to feel this disease and find what where pain is coming from. But when I do my exam, I can feel if there are rectovaginal nodules on the uterosacral ligament.
Dr Shanti Mohling:
I can feel if there's an obliterated cul de sac. And so I'm very specifically feeling not just the uterus and ovaries, but behind the cervix. I'm looking with my speculum not at the cervix, but behind the cervix. I wanna see is there is there a penetration of disease? Over and over, I I find disease penetrating all the way through the vagina that no one's seen because the speculum covers it up and they're just looking at the cervix. So we we need to be doing better exams. I'm I'm able many, many times to diagnose endometriosis in the office by my exam, by doing my own ultrasounds, by looking to see how tissue moves, by evaluating for adenomyosis, for looking at whether an ovary is stuck to a uterus. So I do my own ultrasounds. I do very thorough pelvic exams.
Dr Shanti Mohling:
And I have, I would say, 95% accuracy by the time I go to the OR. I know where that disease is gonna be as far as my fingers can reach. Now I can't always predict diaphragm disease. I can't reach that. I don't have a way to reach that. But their story often tells me whether it's gonna be there, and I have a, I put the patients in tilted head up. Usually in pelvic surgery, the head's down, but as I'm examining the diaphragm and and the underneath the liver, around the liver, have the patient head up before I start my case. Getting back to ultrasound and MRI.
Dr Shanti Mohling:
MRI for me is very useful if I'm suspicious of bowel disease or bowel invasion. Sometimes it'll be negative and I'll still have invasive disease. But, it I find it the most useful for confirming adenomyosis that I suspect on ultrasound when a patient really is reluctant for hysterectomy and wants to know for sure this is part of the problem. So for for evaluating the uterus and evaluating for bowel disease, I find MRI very valuable.
Dr Shanti Mohling:
My own ultrasounds are super valuable for me for preoperatively mapping and knowing what I'm expecting to find. Am I gonna find an endometrioma? Am I gonna find an ovary that's stuck on one side? I'm assessing all of those things to help me know, am I gonna be able to help someone. Right? So my tools are really, really thorough physical exam, my own ultrasounds, and then MRI when indicated. Got it. So I don't routinely get MRI unless I suspect bowel disease.
Georgie Kovacs:
Okay. Now I I know that a lot of people rely on these imaging and sometimes question it. I've also heard in other countries they're more powerful. I'm curious if you have any comments on that.
Dr Shanti Mohling:
Yeah. And so it's also gonna depend on your radiologist and their expertise with seeing rectovaginal disease, for example. Do they see adhesions? Do they see fusion? So those radiologists who are skilled at seeing endometriosis are are not everyday and everywhere.
Dr Shanti Mohling:
And and perhaps in Europe, they have some additional training. I I don't know. But I do know that the the recent European standards are that everyone gets an MRI. And I think they have a whole different protocol that they they might get diagnosed by routine gynecologists and then all patients with advanced endometriosis get referred to specialty centers. Okay. And so the MRI is really useful in that scenario.
Georgie Kovacs:
Okay. Got it. Now you we've talked about pain and pregnancy. I do wanna to jump into that. 1st, with relation to pregnancy, there was a patients that pregnancy is a way to treat or help with endometriosis. And this is a paper that was out of Australia, and they, I guess, did a survey of the impact of physicians saying that. So I would more like your reaction to why physicians are saying that, and is it even true? So can we let's not assess the data.
Dr Shanti Mohling:
I I have I have no idea how to answer that. All I can tell you is that it is never been proven in the literature that it actually cures or helps endometriosis. Okay. I I I think it's just a myth.
Georgie Kovacs:
Well, what about the next part, which is how having surgery would help potentially with fertility? So I will tell you the rule of thumb, so to speak, when I was going through my own fertility journey. I was told if you have it, you should, you know, get the surgery. Well, I actually had the surgery to get diagnosed, and then they finished everything and took it out. And then, some said, you have 12 months where the surgery is, quote, unquote, good so that you can try to get pregnant within that time. I did not. And about 6 months later, I did an IVF and got pregnant. And it never I never understood why I needed the IVF. But quite honestly, I was 40, and this was it for me because I was just so done with my 4 year journey.
Georgie Kovacs:
And I bring this up only because having interviewed so many experts and having been really close to this women's health space for 4 years just with the podcast and talking to patients, what I find is that women kind of enter the I must be proactive about my body space. I mean, granted with the, you know, younger, women, it's a little bit different, but not necessarily in all parts of the world. So I don't wanna make a a blanket assumption, but it does seem like when women need to go to the doctor to get birth control, when they're struggling with fertility, once they have the baby and are really struggling with menopause symptoms, those seem to be the entry points into the health care system and then the alarm bells of, oh my god. I need to know more. That seems to be what I've seen as a trend. And so, you know, let's assume now someone's coming into this and they have infertility, which they're trying to figure out and learn and are overwhelmed by. And then they hear this endometriosis, and they're trying to figure out surgery, IVF. Do I need the IVF? Can you kind of just explain all of that?
Dr Shanti Mohling:
Yeah. So my perspective is from someone who treats endo. Yep. And someone who treats infertility may have a slightly different perspective.
Georgie Kovacs:
And that's fair.
Dr Shanti Mohling:
And our our literature is a little different. But, we do know that 70 to 80% of infertility is caused by endometriosis. Right? So it's a big one. It's a big one for infertility. And there are different ways that endometriosis can cause infertility. The the most dramatic way is when you have very advanced disease. If tubes that are dilated and blocked, you have endometrioma of the ovary. So the ovaries are not functioning as well.
Dr Shanti Mohling:
And so, basically, the tubes that would get you to the uterus, sperm, egg, connect, get back to the uterus are blocked, and you just have anatomic disability to conceive. So that's one way. But a lot of patients don't have such advanced disease and yet they still have infertility. And so I think some of this is theoretic. Some of it is proven. But the the general prevailing thought is that the lesions of endometriosis are associated with peritoneal inflammation. Right? So probably the lesions are releasing this or the body is trying to deal with these lesions. It's chicken or egg.
Dr Shanti Mohling:
We don't know exactly for sure in all cases, but we do know that that peritoneal fluid has high levels of cytokines, IL 6, macrophages, inflammatory markers, And that this appears to be hostile for connecting the sperm and the egg and for the developing embryo too. Right? This whole environment is is a heightened inflammatory environment that is counterproductive for fertility. Right? So that same environment of the peritoneal fluid being, inflamed, if you will, probably as part of what affects bowel function too. So you may not have a completely invasive lesion into the bowel, into the intestines, but you still have bloating, discomfort with your with bowels, alternating constipation and diarrhea, and yet no lesion is invading the bowel. What's going on? Probably what's going on is you've still got that fluid that's creating this kind of constant hostile environment for for the the person's body as well as for, sperm and egg meeting up and affecting fertility.
Georgie Kovacs:
Yeah. No. That that makes sense. I was actually on a, an autoimmune protocol during my fertility treatments, towards the end, which is what got me pregnant. And what's interesting is, I tried again using frozen eggs from before, and it was the only other time that I got pregnant. It was a chemical pregnancy, but never ever did I get pregnant at all for 4 years. And since I had the surgery and was on an autoimmune protocol, I got pregnant and then had a chemical pregnancy. So it's, it is really, really fascinating.
Georgie Kovacs:
So then let's talk about the surgery because, you know, the other interesting part is this, do you need it again? Will it come back? And then some people will have the surgery and they still have pain. So what I would love to demystify here is, is it that the surgery wasn't complete and not all the lesions were found? Did it actually just come back? Do we not have all the data? Because I know, for example, I learned in talking to Katie, who was, a guest as well, about these hidden pockets that many will many surgeons may miss. And so could it be that that's what was missed and why someone may still have pain? So can you talk to us a little bit about this?
Dr Shanti Mohling:
It's tricky. Pain is really tricky and multifactorial. Right? Especially when a person has this disease. I believe they have it from birth that it's congenital. I believe endometriosis is mostly congenital. And that you hit menarche, you begin having hormonal release from your ovaries and that stimulates endometriosis and pain begins. We could use to have a study, but but no one would wanna enter into a study where you'd get randomized to being having fulguration or excision. And so I think there's enough knowledge that that's gonna be a really hard study to have.
Dr Shanti Mohling:
But I think that a lot of patients have think they have excision surgery and they have a regular gynecologist who burns a few areas, snips a few obvious areas that are little spot excisions, and, and then the patient wonders why they had recurrence. And then they probably didn't do anything if it was on the bowel, and they probably didn't do anything if it was on the diaphragm. And I'm sure they didn't do anything if it was on the ureter because that is like, oh, that was too dangerous, they would say. So so I think a lot of disease that recurs is inadequately treated, and yet we call it recurrent. It's really just persistent, not recurrent is my is my my guess. Right? Now I've also seen some people with recurrent pain who've had one of the people who we know do radical excision, and they have some recurrent pain and maybe spot of recurrent disease. But when I go back in on someone who I know went to one of the people who is known to do really radical excision like I do, there's not a lot of disease. I might find one spot and and it's where the person said I feel I have something.
Dr Shanti Mohling:
And when you're dealing with stage 4 disease, you may leave a few cells behind. You're doing as much as you can to to radically remove disease, but in some cases you can't. Right? Especially if you're leaving a uterus, you're leaving ovaries, you're and if if disease is everywhere like an a bomb went off, you cannot remove it all if you're preserving fertility, especially. Those patients are gonna need some somewhere down the line, they're they're probably gonna need another surgery because they've got adenomyosis leaking out of the uterus, connecting to the bowel. They're in they're gonna end up with a problem. Right? And, and, and an invasive problem later. So I, I think that when it is truly excised that area will not recur. One of the keys is that disease is subtle.
Dr Shanti Mohling:
So, sometimes I'll take care of someone who is surgically menopausal from hysterectomy and removal of ovaries for endo, and they didn't remove the the disease. And I'll go in and I'll see this, like, cobweb appearance of the tissue, this sort of white ghost like stuff. And it comes back off in positive for endo. Right? But it looks very different and some people would say it looks fine. It's just scar tissue. Leave it alone. But yet the person has recurrent pain, continued, you know, affecting their bowel function, affecting everything. No uterus, no ovaries.
Dr Shanti Mohling:
This white sort of ghost like lesion, and they still have endo. Right? So if if if they had a hysterectomy and removal of ovaries, that's certainly not gonna be the treatment if the endo's left behind. I've also seen it where the invasion is extraordinary with fibrosis and and invasion of other structures post hysterectomy. So then also, I will see fairly good, patients who've had someone who I know of who's a good minimally invasive surgeon has done their their procedure. And I'll see that they've taken spots where that was most focused. And they didn't do wide peritonectomy and they didn't even really look in the cul de sac, they're gonna miss some disease. And that person is gonna have recurrent pain. Then I also like to think about I when I'm examining someone, I'm I'm evaluating what other sources of pain are there.
Dr Shanti Mohling:
So there's myofascial pain, there's bladder pain, there's bowel pain, there's neuropathic pain, and there's endometriosis. Those are the main chronic pain triggers. And so did someone forget to think about interstitial cystitis or does not even think about it? Do they have food sensitivities that they truly have bowel issues that are related to food sensitivities? I I don't know if you're aware. I have a recent publication on intestinal permeability showing an association between endometriosis and intestinal permeability. It doesn't mean one caused the other. We don't know. We just know that in half my patients with endo, there was a presence of intestinal permeability. We know that there is an inflammatory piece.
Dr Shanti Mohling:
Intestinal permeability is part of that. It has to do with, gut and the immune system. We know from a lot of data that there's a microbiome piece. And and I suspect that for some patients they have endo, but they also have concomitant bowel issues related to food sensitivities. We we know there's an association between celiac disease and endo. So there's this, like, autoimmune question. I don't think it's an autoimmune disease, but I do believe that a lot of the autoimmune type triggers and problems are seen in patients with endometriosis as well.
Georgie Kovacs:
Another question is around the excision. What I've understood is similar to oncologists when they're removing a tumor, they don't just take out the tumor and that's it. It's like the area around it as well. So, ideally, you're you're not missing it. Okay. So wide margins.
Dr Shanti Mohling:
When I do my preoperative exam and I note, say, that someone has specific discomfort on one side in the cul de sac, I'm gonna take extra time to look look around there and excise tissue there. And that's when I sometimes find these crazy hidden pockets, which also to me speaks to the fact I believe that endometriosis is congenital.
Georgie Kovacs:
Tell me more about that.
Dr Shanti Mohling:
When the embryo is developing, it's another another term is Mullerianosis. So as the Mullerian system, which is which is the upper third of the vagina, the uterus tubes is developing, Those cells are migrating down, you know, in the developing embryo. Migrating down to begin to form the reproductive organs. For whatever reason, I think some cells get stuck along the way during embryogenesis And that those are the cells that become dysfunctional and become endometriosis later. Also endosalpingiosis is this kind of cousin to endometriosis and endometriosis cells look like glands that line line the uterus and endometrium and endosalpingiosis looks like the cells that line the fallopian tube. They are both found, in the peritoneum in a dysfunctional way causing pain and can be seen on pathology reports. It's really interesting. I always I'm just oh, endosympangiosis.
Dr Shanti Mohling:
What's that? I ignored that in the early part of my career. Now I realize, oh, that's something too. That hurt that seems to be hand in hand with endometriosis.
Georgie Kovacs:
So how would I as a woman, because not all of us, you know, work in health care. And honestly, I worked in health care and still couldn't figure this out. So that doesn't even necessarily help. So how does anyone trying to navigate this? Like, what would be your words of of wisdom? Because it complicated yet not in the sense of, you know, you need to find the right surgeon. If you're having pain, which most do, it could be as simple as you didn't get all the endo. It could be, oh, you have celiac, and it should have been diagnosed. It could be these other things that you were talking about that can contribute to pain. So it's not so black and white.
Georgie Kovacs:
Let's talk about this more complicated part of, you know, how do you know is it I need more surgery or look into other factors? Like, how would one and is it the surgeon that they go to or the OBGYN? Because they're not necessarily trained in endo. How like, what would be the even type of clinician you'd go to to navigate?
Dr Shanti Mohling:
It's well, it should be a gynecologist. And I think a lot of gynecologists these days reflexively send patients to pelvic floor physical therapy. Okay. Which is great because I think pelvic floor PT physical therapists are very skilled at understanding what's pelvic floor problem and what's what's something they can't address. What's something higher up that might be endo. And and increasingly, I would say there is more and more training for pelvic floor physical therapists. And they do a great job in helping make that diagnosis. 20 years ago, the a pelvic floor PT was far rare and far between.
Dr Shanti Mohling:
Right? Now we have more access and and they're super valuable in helping guide patients. So I think that's one area and one place that that the patients can start. They can request that. Trying to understand is this is this bladder, is this bowel, is this pelvic floor, or is this something higher up and I need surgery? And I I would say increasingly, our pelvic floor therapists are tremendous resource in helping understand and helping deal with a very big component of pelvic pain. So if you for years have terrible endometriosis and and debilitating pain, you're gonna be in a contracted state. Right? So that contracture long term on the pelvis, abdominal muscles is adding to the pain Mhmm. At the very least. Right? Some of it may be long standing pelvic floor pain that has nothing to do with endometriosis.
Dr Shanti Mohling:
But they it it it may be it may be both. And so the physical therapists are really good at addressing a component of the pain. So that's one area. I do think that some patients respond really well to birth control pills. I I see most of my patients do not want them. But I think a lot of patients use birth control pills. They love that their periods are lighter. They feel better.
Dr Shanti Mohling:
Or patients use an IUD. That helps ameliorate their pain. If that works for them, then that's a great a great point of stabilization for that point in their lives. Right? If it's not working, that's a sign you really need further evaluation.
Georgie Kovacs:
Okay. Do you have to have surgery if you have endo?
Dr Shanti Mohling:
So not everybody gets worse. You know? There it's it's interesting. There's some disease that's kind of wide spread peritoneal disease, and then there's some disease that's like everything is glued together and you have a frozen pelvis. It's hard to know who has what. Right? So I think that no. You know, the the there is a very small, maybe, point one one percent risk of malignant transformation when you have endometriosis. In the later years, there's some malignant transformation. Same with adenomyosis.
Dr Shanti Mohling:
There's about a 1% risk of adenomyosis becoming an adenocarcinoma. So there are inherent risks, but it's low. It's a low risk. So if you have silent endometriosis and you aren't really bothered by it, you're not worrying about your fertility, you wanna just get to menopause, I don't think we have to go aggressively. There is risk of surgery too. So one has to weigh that out. It's it's really an individual basis.
Georgie Kovacs:
Yep. Absolutely. What about the hysterectomy? I promise you I'll ask about the surgeon, but, you know, I know generally that that ACOG has said, okay, OB GYNs, you know, we probably think hysterectomy first too early, too often. Let's start really thinking about what else is going on with a woman before we start giving hysterectomies. Tell us about how you are seeing that with endo. Like, how would a woman be able to make an informed consent decision?
Dr Shanti Mohling:
Yeah. So so I'm gonna I'm gonna bring up one really important thing before I answer that question Please. Which is, that I've also taken care of a number of transmasculine persons with endometriosis, pelvic pain, and really young, you know, young people really, really don't want their uterus. I'm happy to take their uterus out. Right? And so and also their endometriosis at the same time.
So I think I think that that I I just want to acknowledge that it's not just women, but also Thank you. Transmasculine patients with really painful uterus, painful periods, not wanting that at all. And so for them, hysterectomy may often be first line choice
Dr Shanti Mohling:
In addition to excision. I I know I think never should hysterectomy be done without excision if there's endo. The next part of your question is that, yes, it's very individual. And oftentimes, patients are coming to me and knowing they want hysterectomy and they want excision and endo and they want to feel better. And so then I'm evaluating, helping them decide what's the right choice. There are risks of hysterectomy too. And if you don't do it right, you can have some vaginal fault prolapse. There's just an increased surgical complications with hysterectomy itself.
Dr Shanti Mohling:
So it has to be there has to be a good reason for it. And a lot of time, so maybe 25% of the time, there will be adenomyosis, and it really makes sense. If they're done with childbearing, if they don't want their uterus for another reason, if they have uterine pain on exam, not just posterior cul de sac, adnexal pain, bladder pain, but actual uterine pain, they might feel better with hysterectomy. On the other hand, I do a lot of what I call fertility optimizing surgery. And so we do know there there, some great data from Ted Lee's group in in Pennsylvania that from McGee that showed you could have a very similar relief of pain with excision only and not hysterectomy. And that did not include people who had adenomyosis.
So it's very important to know, number 1, what the whole story is and what the patient's desire is. So that that that conversation is the most essential piece.
What do they want? Do they wanna just never look back? Never have another period. They've had they wanna be with their kids. They just totally that's that that's where they wanna go. Sometimes hysterectomy is the right choice. Yep. Sometimes there is significant adenomyosis and hysterectomy becomes the right choice. And sometimes for whatever reason it's not the right choice to remove the uterus, and removing the endometriosis makes a difference. It makes a difference in pain, infertility, and in in long term well-being.
Dr Shanti Mohling:
Sometimes you never have to remove the uterus. But over and over again, I'm reminded removing the uterus, removing the ovaries, that doesn't do the that doesn't treat it.
Georgie Kovacs:
So with the surgery, what about pelvic PT? So I interviewed Caitlyn Tivy, who is pelvic floor physical therapist, and she was talking about definitely seeing one after surgery, possibly even before and just the value that they can bring. Are you finding that that's fairly common practice, and what are your thoughts about that?
Dr Shanti Mohling:
That's definitely common in our practice at Northwest here in Portland. And and in Portland, we have this just robust, amazing pelvic floor collective, physical therapist, massage therapist, and they they meet monthly. Really, they educate themselves. I've I've spoken with them a a few times. And so we have tremendous access here in the northwest. I don't think every community has that same kind of access. But a lot of times, my patients are coming to me because the physical therapist said, you know, there may be something else going on. You should think about endo.
Dr Shanti Mohling:
And so then I see them. They go back to physical therapy afterwards. Many of my patients who are local, I'd like to get them set up with PT afterwards. And some patients feel so much better after excision. They they don't really feel like they want PT. But foremost, it can be a tremendous benefit.
Georgie Kovacs:
Now I'd love to talk about some of these other treatments on the market. So we talked about birth control already. You know, there's Myfembree, Orilissa. Obviously, we talked about surgery. I don't know if you had thoughts about any of these that you wanted to share.
Dr Shanti Mohling:
I think by the time patients come to me, they're really looking for surgery. Okay. And they really want excision and they want as much surgically done as they can. So I'm not managing chronic endometriosis medically at all. But there's also a reason that I don't, which is I I find it really disappointing that the medications are are so promoted and yet they only temporize pain. They don't really treat the disease. We don't have data saying it makes the disease go away. There's this significant side effect profile, bone loss concern, joint pain concern, and so on for 6 months to 2 years of pain relief.
Dr Shanti Mohling:
And then you're back pretty much where you started, increasing pain back again over the next year. So I think that there are certain times when it might be valuable to use, one of the g n GNRH analogs. For example, during pandemic, we had a limitation on being able to operate. And so that was a time when you might have wanted to temporize a situation for someone who's incapacitated in pain. Right. I don't like patients to be on them prior to surgery because they do suppress the lesions and make them a little harder to see. And then in theory, I, you know, I think the lesions kind of reexpress when you come off the medication. So I wanna be able to see everything when I'm in there.
Dr Shanti Mohling:
And and lesions can look subtle in a teenager, in a menopausal person, and can look anywhere from very subtle to very extreme. Those subtle lesions are the ones I don't wanna miss. I'm I'm honestly not gonna miss an endometrioma or a frozen pelvis, but but some of that subtle peritoneal disease could be suppressed.
Georgie Kovacs:
So back to finding a surgeon. So for those who can't reach you, because I know that there's a company, I always forget the name of it, but I know they purchased Nancy's Nook. You know, I I've looked at their website, and I have to say I struggle. And, again, I I support anyone who is trying to help. So I I hope no one takes this as a poo poo on anything because I'm I'm not a surgeon. I'm not an expert, so I can't evaluate it. But it was just interesting to me. I looked at it, and is it enough, or are there other things that women should also take into account as they're trying to find?
Dr Shanti Mohling:
I'm I'm on that website and only because I recognize that there were enough patients who were gonna wanna wanna vetting system who are gonna look on that site. And so I chose to to be on that site. But there are lots of amazing surgeons who are not on that site who want nothing to do with paying to be on it. And and and you have to you have to submit your your work, and and there's, you know, a tribunal who evaluates whether or not you're eligible to be on this site. So, I I think that that it's it's not the ultimate list of of who can actually do a surgery. Right? There there are many others. Nancy's Nook has done a good job in a way to find who's really focused and interested in endo and who is someone who a patient might wanna find in all regions of the country and even the world, I think. So it's a tough thing and, and not every state even has a specialist who really, believes in excision of endo.
Dr Shanti Mohling:
It's really tough. I don't, I don't, I actually don't know how how patients are doing it, and there aren't enough of us who are devoted to it. So one of the things is some people don't know if they even have it. Right? Yep. And so if they have, they don't have, say, out of I Nick and I are out of network we use out of network benefits. Some people are just cash, but you still need insurance to cover your hospital, your anesthesia, use of the OR, and so forth. I think that for some patients who are in more rural communities, who don't have the financial access and just wanna know what they've got, I think most gynecologists can at least make a diagnosis, can do a laparoscopy, take a lot of photographs, maybe biopsy something, and then they know what they've got. They've got a set of photos and they know, alright.
Dr Shanti Mohling:
I have this disease now. Ultimately, I've gotta find the right person to take care of me. And this is this is sort of the European model. In in Europe, I think routine gynecologists will make a diagnosis. They'll do a laparoscopy, a couple little cuts in and out, and then the patient knows, okay. I've got stage 4 disease. I really need to go up to Verona or Milan and have, you know, my surgery done by an expert. That model may work for some of our our people in in more rural areas or just in states that don't have excision experts.
Dr Shanti Mohling:
So at least they can get a very clear understanding on a diagnosis, and then they can make a choice. Okay. I'm gonna I'm gonna use a birth control pills for a year and save my money or get insurance or, you know, but but finding out what's really going on is number 1. Now when someone comes to me or someone comes to one of the other people who actually do this type of disease, I'm gonna diagnose and treat at the same time.
Dr Shanti Mohling:
I'm doing one surgery. I'll do diaphragm. I'll access the bowel. I'll do whatever it takes. Even if it's their first surgery and no one's looked in there. Mhmm. I'm gonna have a pretty good idea of what I'm getting into based on careful history, careful exam, ultrasound, and maybe MRI. Some of us can see and treat, but every gynecologist can make a diagnosis.
Dr Shanti Mohling:
Okay. And that at least is a foot in the door. So I think that model is appropriate even in our country And it's certainly a model that is, used in Europe.
Georgie Kovacs:
The next 50 years, you know, I'm so curious. Like, do you have any wishes or hypotheses about how we'll be looking at endo in the next 50 years? Because people are working so hard on trying to find other diagnostics. I'm sure there's other treatments out there, that people are looking at. So what do you hope to see, or what do you think we'll be seeing in the next 50 years?
Dr Shanti Mohling:
Well, it's, you know, it's tough. Will will we find something that's more effective than surgery? That would be nice. In some ways, sometimes I'm asking myself this feels like so primitive. I'm cutting into someone and I'm cutting out their disease, and this is all I have. This is the best I have. It would be remarkable if if there were a drug without I mean, that would be incredible. But more importantly, I think understanding some of the ideology, some of what causes it, what are the genetics? How can we should we be screening all all teenage, cis females patients born female for this disease.
1 in 10, we probably should. We screen all women for breast cancer. So I think screening, finding finding this disease earlier, that will be one of the important things. So I think that has to happen in adolescence. Right? I I had a teenager or not a teenager. I'm sorry. I had a 23 year old a few weeks ago.
Dr Shanti Mohling:
Disease from pericardium, I took it off her the sac outside of her heart, the diaphragm, cecum, rectum, all the way through the vagina. I mean, from here down, she had endo at age 23. Right? And advanced endometriosis. And almost all of these patients are told they don't really have anything. They they're told, here's a birth control pill. We don't need to do anything else. You need to eat better. You need to do yoga.
Dr Shanti Mohling:
I mean, I believe in eating well and I believe in yoga. Those and we should all be doing that to feel better, but it's not the treatment for endometriosis. And so we I think it's incumbent upon us is to listen better and hear when someone has pain and actually think maybe we need to do more at this young age. At a young age where we can can then prevent these later, you know, twenties thirties and forties bowel resections and invasive procedures, which which can which the longer you wait, the more complicated they can become.
Dr Shanti Mohling:
And when you have really advanced disease, it is not without complication to excise it, even in the best of hands.
Georgie Kovacs:
Wow. Well, I really appreciate everything that you've shared. And it it is so cool how you started out your career as a massage therapist and then moved into this. And I I do find when people have, like, almost a multidisciplinary background, so to speak, it brings such a wealth of resources, I guess, is the best word, to their current discipline because there's so many different perspectives to bring in. And and you've shown that here, and so I really appreciate that. Is there anything I missed? Like, anything you're like, I why didn't she ask me this question? I have to share this.
Dr Shanti Mohling:
I think I would just add that I'm not immune. Like, I've had 3 laparotomies, which means, like, the big the big cuts, like, up and down across, you know, misdiagnosed ruptured appendix for 2 weeks that I nearly died from. Oh my goodness. Infertility journey. And and so I think that as a provider, I really I ally understand that surgery is a big scary thing. Like right? Like, I had it. I nearly died from that misdiagnosis. And so it I almost think every surgeon should have to go through something like that to know what it's like to be wheeled into the OR and to feel alone and know you're you're going under and you have to surrender.
Dr Shanti Mohling:
It's a huge leap of faith that you're you're gonna trust someone to take care of you while you are completely vulnerable and out. Right? And so I, I just wanted to say that I'm not on a pedestal looking down at people with pain. I've had my own journey and know a bit of what that's like. Also, how the body is miraculously able to heal from all of that. Right? That's where yoga and great food and all that really comes into play so that we can heal and go through these really traumatic things and know that there is a light at the end of the tunnel.
Georgie Kovacs:
Oh, thank you.
Dr Shanti Mohling:
It was a pleasure. You asked beautiful questions and, yeah, I think you're doing a a wonderful service to, bring more light to this challenging, aspect of healthcare. Yeah. Thank you.
Guest Bio
Dr. Shanti Mohling completed medical school and residency in Obstetrics and Gynecology at the University of Colorado and has been board certified since 2003. She spent 15 years in private practice in New Mexico. In 2014 she returned to training and completed a fellowship in Minimally Invasive Gynecology (MIGS) at the University of Tennessee College of Medicine, Chattanooga. She served as faculty and Director of Gynecology in Chattanooga through 2019. In Spring of 2021, Dr. Mohling joined Northwest Endometriosis and Pelvic Surgery in Portland, Oregon. She now devotes her clinical activity to patients with pelvic pain and endometriosis.
Disclaimer
The information shared by Fempower Health is not medical advice but for informational purposes to enable you to have more effective conversations with your doctor. Always talk to your doctor before making health-related decisions. Additionally, the views expressed by the Fempower Health podcast guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent.