Diagnosing, treating and living with endometriosis

Many patients report their symptoms of endometriosis are often dismissed by healthcare providers as “normal” dysmenorrhea. This worldwide trend results in delays to diagnosis that are estimated to range from 6 to 11 years from symptom onset. 

On this episode, Drs. Bigham and Omole speak with Dr. Catharine Allaire, a clinical professor at UBC's Department of Obstetrics and Gynaecology and co-author of the review in CMAJ entitled “Diagnosis and management of endometriosis”. Dr. Allaire discusses the challenges and delays in diagnosing endometriosis, its symptoms and causes, and the different varieties of the condition. She also explains the role of imaging in diagnosing endometriosis and how it can be managed through various treatment options from hormone therapies to surgery.

Drs. Bigham and Omole also speak with Hannah Robinson, an emergency department nurse who has struggled with endometriosis for seven years. She describes the challenges she faced receiving a diagnosis and accessing care.

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Transcript

Dr. Mojola Omole:

Hi, I'm Mojola Omole.

Dr. Blair Bigham:

I'm Blair Bigham. This is the CMAJ Podcast. Today we're going to be talking about endometriosis. A recent publication in CMAJ, entitled, “Diagnosis and management of endometriosis” aims to help everyone understand just how common and difficult to diagnose endometriosis can be, which affects a lot of women, and Jola, you are one of them. Tell me about your experience with endometriosis.

Dr. Mojola Omole:

So if I was to look back, I'm one of those people that my friends and family would be like, "Oh, Jola always has a tummy ache." Because I was someone who has always had some sort of chronic, just abdominal pain. And because I'm also someone who has anxiety, I always just thought that was just like, that's just my nervous system. And it wasn't until after I had my son that my symptoms had gotten to the point where I was having cyclical abdominal pain, nausea, and vomiting that would be lasting a week around ovulation and then another four or five days around my menses. And so that was when it actually was my mom that pointed out that, you know what, this doesn't seem just just random you don't feel good, that this might be something related to your cycle, and it could be endometriosis. And so that's when I finally sought care for it.

Dr. Blair Bigham:

How did this affect your surgical practice?

Dr. Mojola Omole:

So nothing affects my surgical practice. For me, honestly, I think that is my philosophy is that I just powered through everything. And so in between cases in the OR, I would be in the bathroom throwing up. In clinic I would lie down for 10 minutes just because I was having such pain. And so it made me pretty miserable in general. And basically all my energy was towards working and taking care of my kid, which kind of lacked, and so it was mainly just my energy was towards work.

Dr. Blair Bigham:

Well, it sounds like endometriosis is incredibly common. We have someone else who struggles with it and who really struggled getting diagnosed and getting treatment, and she'll be on with us next. After that, we'll speak with Dr. Catharine Allaire, who has published recommendations for diagnosing and treating endometriosis.

Dr. Mojola Omole:

We're going to speak with the author of the CMAJ article on diagnosing and treating endometriosis in a moment. But first, we're going to hear firsthand what it's like to navigate the healthcare system when you're living with endometriosis. Hannah Robinson is an ER nurse in Oshawa and the mother of a seven year old. Hannah, thank you so much for joining us today.

Hannah Robinson:

Thanks for having me.

Dr. Mojola Omole:

So when did you first experience the symptoms that were related to endometriosis?

Hannah Robinson:

I shortly experienced them after having my daughter seven years ago. After my cycle got normal, and I was past that postpartum part, I started to get excruciating symptoms from my periods.

Dr. Mojola Omole:

Okay. And what did you first think it was when you were having these severe symptoms, like pain around your periods?

Hannah Robinson:

I thought it was normal periods. Because prior to having my daughter, I was on birth control religiously. So those periods were pretty mild and no symptoms. And so when I was coming postpartum and getting used to a normal natural cycle, I just thought they were associated with normal periods.

Dr. Mojola Omole:

And how was this affecting your life at the time?

Hannah Robinson:

At the time, at the beginning it wasn't that bad. And then as time progressed and my endometriosis became worse and worse, it was becoming more and more debilitating to even work, do daily activities, anything like that.

Dr. Mojola Omole:

In the month, did you have breaks where you felt okay, or was it just like there was something going on every week?

Hannah Robinson:

Yeah, it was based on my cycle. So when I would ovulate, excruciating pain to even sit. I felt like I was constantly nauseous. I couldn't do anything, really,  around ovulation time. I always knew spot on when I was going to. And then around my periods, those five days that I was menstruating, I was out.

Dr. Mojola Omole:

Oh wow. That's terrible. So how did you initially seek help for your symptoms when you first had them?

Hannah Robinson:

I first went to my family doctor and said, "These are my symptoms. I have excruciating pains around my cycle. I am not on anything. Is there anything I'm doing wrong or should be taking?" I started to also notice some pain during sexual intercourse as well. And he just suggested putting me on a birth control pill, which I didn't want to do at the time. I wanted to let my natural cycle get in sync again. And I was against it at the time. And he just dismissed my concerns, and was like, "Oh, we'll see how it goes."

Dr. Mojola Omole:

So did you at that time feel like you weren't really taken seriously or being heard?

Hannah Robinson:

Oh, 100%. My family physician already is someone that you have to really advocate yourself to. And I had seen him a total three times before he did anything else about the period pains.

Dr. Mojola Omole:

And so you saw him, he recommended birth control. You at that time declined it. So what happened then? How did your symptoms progress after this?

Hannah Robinson:

After that, the pain increased. It became almost 10 out of 10 every time I got a period. I was getting heating pad burns from trying to get any kind of relief. I started getting brain fog and migraines. I was having painful bowel movements and urinary issues.

Dr. Mojola Omole:

Wow. So they really were progressing. And so did you return to your family doctor when you started seeing the fact that going to the bathroom, whether to urinate or having bowel movements, were becoming excruciating for you?

Hannah Robinson:

Yes. So I finally actually made an appointment, and I demanded him to refer me to a gynecologist.

Dr. Mojola Omole:

What was that reaction like?

Hannah Robinson:

First off, he was offended that I was demanding it. And I said, I had to use my healthcare worker card, and be like, "Hey, I know what's going on with me is not right. I need to see a specialist that deals with these sorts of things. So you need to send me to someone who can help my symptoms and manage my care going forward."

Dr. Mojola Omole:

And how did that make you feel that you had to advocate so strongly?

Hannah Robinson:

Frustrating. It made me feel like, am I crazy? Are my symptoms really that bad? Am I over-exaggerating? Am I going to be that patient that is, "Oh, Hannah's in again," or am I going to be taken seriously? It was a very uphill battle and really frustrating.

Dr. Mojola Omole:

So when did you suspect for yourself that, you know what, this might be endometriosis?

Hannah Robinson:

So when I started getting the breakthrough spotting in my cycle and the urinary problems in the bladder, and the going to the bathroom problems, I spoke to my family, my mom and my grandma about it, and they actually confirmed with me that we have endometriosis significantly in my family. So from then, I was self-diagnosing myself because of the family history.

Dr. Blair Bigham:

How long did it take you to get into to see an OB?

Hannah Robinson:

When the referral was put in, I didn't see her for seven months. That's the backlog.

Dr. Mojola Omole:

And so, you see the OB, what did they say to you?

Hannah Robinson:

100%, I think that you're valid, and you're on the right track. You definitely sound like you have endometriosis. At this point in time, your only option is to either go on Vyvanse or birth control continuously because we need to stop your periods. And as someone who has struggled with moods based off medication, I was really hesitant to do it. So I eventually chose doing the birth control continuous.

Dr. Mojola Omole:

And how has that been for you?

Hannah Robinson:

So being on the birth control continuous gave me a PE. So I ended up getting a PE from it and then had to discontinue that.

Dr. Blair Bigham:

No way.

Hannah Robinson:

Yeah. And then go through treatment for that. So then I was pulled off of the birth control for that reason.

Dr. Blair Bigham:

Wow. So then you had to be anticoagulated for a bit?

Hannah Robinson:

Yeah.

Dr. Mojola Omole:

And so what options did you take at this point?

Hannah Robinson:

So I said no to the birth control after I got the PE. I decided, no, I'm just going to see how I am off of it. Obviously my symptoms got worse. So we went, and I had the surgery for it.

Dr. Mojola Omole:

So where were you in terms of your physical and mental health at this point?

Hannah Robinson:

Physical health, really frustrated because I constantly looked like I was three months pregnant. And frustrated and emotionally drained from dealing with constant pain and fatigue, and then no one listening or understanding me. And then my manager at work getting frustrated at me for taking time off. And endometriosis is not considered something that is a medical reason to take time off of work.

Dr. Blair Bigham:

And this is, as a nurse, you were having trouble getting time off for a medical condition. Wow.

Hannah Robinson:

Yeah.

Dr. Mojola Omole:

So you did the surgery. Did you notice any improvement in your symptoms after the surgery?

Hannah Robinson:

Yeah. I had two months of relief, and then symptoms came right back.

Dr. Mojola Omole:

I'm so sorry. And now that you've had this, so what's next? What's happening now?

Hannah Robinson:

Yeah. I'm being referred to an endometriosis specialist. 

Dr. Mojola Omole:

So based on your experience, what are your thoughts of just the level of understanding and empathy that people in the medical community, and for you it's like too, the medical community being your employers and also as a patient, what would you want to see differently for the next person who's experiencing endometriosis?

Hannah Robinson:

So specifically just talking about emerg patients that are coming in these crisis pains, to being taken seriously when they're telling the physicians or the staff, "I have my period, I'm in 10 out of 10 pain." And not, "Oh, it's just your period, whatever." I really think there's a misconception on how painful endometriosis can actually be and how debilitating it is. And I feel like, widespread, that is mostly the issue is people aren't taking it seriously.

Dr. Mojola Omole:

Thank you so much for joining us Hannah. Hannah Robinson is an emergency nurse in Oshawa, and she was joining us today from Oshawa. Thank you.

Hannah Robinson:

Thank you.

Dr. Blair Bigham:

Thanks so much. Dr. Catharine Allaire is the co-author of the review in CMAJ entitled, “Diagnosis and management of endometriosis”. Dr. Allaire is a clinical professor at UBC's Department of Obstetrics and Gynaecology. Catharine, thanks for joining us.

Dr. Catharine Allaire:

It's my pleasure to be here.

Dr. Blair Bigham:

We just heard how long it can take for people to finally be diagnosed with endometriosis. How common is that delay to diagnosis?

Dr. Catharine Allaire:

Unfortunately that delay has been really identified across the world in many countries and has been recognized as being between six and 11 years, depending on the country. And, it's a universal phenomenon.

Dr. Blair Bigham:

What are the key obstacles? Why is it taking so long if this is known to be a problem worldwide?

Dr. Catharine Allaire:

Yeah, there's a number of factors that contribute to that delay. And the first one being that some types of endometriosis can only be diagnosed with a laparoscopy, meaning that they don't really show up on any kind of non-invasive imaging. And we still don't have a non-invasive blood test for endometriosis. So that's the first factor.

The other factor is that the symptoms of endometriosis being severe menstrual cramps, chronic pelvic pain with sex, unfortunately often are dismissed or not really paid much attention to for a number of reasons. And sometimes it's related to the difficulty that patients have with discussing issues that are below the belt. Sometimes there's some taboos around discussing menstruation that prevent them from really talking up or speaking up and seeking care.

The other factor that occurs is, when patients do speak up and seek care, sometimes their pain is dismissed. And there's really a lot of discussion among patients of endometriosis about the phenomenon of medical gaslighting. Which, that term is quite strong. And I think when I hear that, I realize the amount of medical trauma that they've had trying to get to a diagnosis. So the third factor that goes into that is the lack of recognition by clinicians and frontline providers of the symptoms of endometriosis, and to think about endometriosis as a potential cause of these symptoms.

Dr. Blair Bigham:

I want to go deeper on a word that I picked up there that you said around being dismissed, and so that tendency. What do your patients tell you contributes to their perception of why they get dismissed?

Dr. Catharine Allaire:

I think many of them have sought care, have seen either their family physicians, sometimes they don't have family physicians, so they wind up, they land in the emergency room with acute episodes of pain with their periods or intermenstrual cyclical pain. And they are sometimes told that this is normal, this is part of being a woman, especially if it's a time of menses, and they will get better with time and they just have to get used to it. Because often these symptoms start in the teenage years, and this is what they've heard. I've had patients tell me that they just learned to cope with their periods, and they thought it was normal. So they basically stopped all their activities for about a week a month or planned around their cycles throughout their lives essentially. And missed work and didn't go to school during that week, and just thought that this was acceptable and a part of what it was to have periods. Which I find remarkable, but it's still happening.

Dr. Blair Bigham:

Teach me more about endometriosis. Is the pain usually worse during menses?

Dr. Catharine Allaire:

So endometriosis is a condition where cells that are endometrial-like, so they're similar to the cells that line the endometrium, the uterus, grow outside of the uterus. And so these cells do respond to hormones in a similar way to the uterus, and therefore, they do respond to estrogen, and they do cause inflammation and proliferation and pain at those times of the month where menstruation occurs certainly more frequently and more severely at that time.

So one of the cardinal symptoms of endometriosis would be severe menstrual cramps at the time of the menses. However, the pain does extend beyond the menses. So often patients will have pain for a week leading up to the menses. And over time, if they're allowed to have this kind of repetitive episodes of pain, then there's a risk of developing more of a chronic pain situation. And then they develop chronic pelvic pain from the windup of the nervous system that occurs from cross sensitization with other systems such as the bowel and the bladder where they develop sometimes irritable bowel syndrome or painful bladder syndrome, pelvic floor muscle tension, and myalgia. So there's a whole complex of pain that can develop over time due often to untreated pain.

Dr. Blair Bigham:

Before it gets that bad, when it's in the earlier stages where the pain is during menses, how can frontline caregivers recognize the difference between menses pain and early signs of endometriosis?

Dr. Catharine Allaire:

Yeah, that's an excellent question. I think that the most important difference is that just primary dysmenorrhea or just normal menstrual pain, it usually responds to NSAIDs, and it's very short-lived. It'll be like two days and will respond to NSAIDs. And the message we're trying to get across is that if someone's menstrual pain is not responding to that frontline therapy, and they're debilitated and affecting their quality of life, their ability to function during that time, then that's something to pay attention to.

Dr. Blair Bigham:

Got it.

Dr. Mojola Omole:

Is the pain and the symptoms only during menses, or do some people have it in other parts, like for example during ovulation where there's also a peak of hormones?

Dr. Catharine Allaire:

Absolutely. So the reason I'm mentioning dysmenorrhea is that teenagers often present with that as their first symptom. But certainly when they become sexually active, they start noticing deep dysmenorrhea. So we distinguish deep from introital dysmenorrhea just because they have different causes. But the pain is felt at the top of the vagina with a deeper thrust insertion pain, as opposed to just insertion pain. And also chronic pelvic pain, that's when the pain starts developing at other times.

So yes, ovulation is one of the other times where patients mention a lot of pain and then sometimes the week leading up to the menses. So essentially when you talk to a patient that's been dealing with this for a while, often they'll tell me that their only good week is the week after their menses. So they have a week where they're relatively pain free, and then it starts building up again until they get to the point where I see them unfortunately at the end of the line where they're having chronic pelvic pain where it's daily with still some cyclical exacerbations.

Dr. Blair Bigham:

I want to walk back to medical school here. Just tell me a little bit more—what causes endometriosis, and just how common is it?

Dr. Catharine Allaire:

So, the how common is it? I think the estimate is one in 10 female-bodied people of reproductive age will have endometriosis. That's estimated through laparoscopic data and other extrapolations. Because as I've mentioned, there's no real non-invasive test. So we have to go through secondary measures such as laparoscopies for various indications.

The cause of it, despite years of knowing of this condition, we're still not fully 100% sure of the cause. But the current best thinking is that we know that retrograde menstruation is a normal phenomenon in female-bodied people in the sense that having some influx of endometrial cells out the tubes into the peritoneal cavity happens in most people. But those cells are usually recognized by the body as being in the wrong place and basically destroyed and cleared.

And so we think that in endometriosis, there's some changes that occur either at the cellular level with somatic mutations, or changes in receptivity, as well as immune and autoimmune and endocrine changes that might foster and allow the implantation and growth of these cells in the peritoneal cavity. So that's the current, most accepted theory. However, it doesn't explain certain types of endometriosis. So there's recognized zebras of endometriosis where they wind up in lungs and incisions, et cetera, and that's really thought to be through lymphatic or vascular dissemination. And there's also some thinking that there might be some other types where there's deep endometriosis could be from actual changes, the coelomic metaplasia of some other types of embryonic cells that really develop into that type of cell later on. So it's quite complex, and that's part of the difficulty is we still won't even have a unifying diagnosis.

Dr. Blair Bigham:

I was really interested, your paper distinguishes between those three subtypes, the superficial peritoneal type, that common type, the ones that affect more endometriomas on ovaries, but tell us more about that deep endometriosis. Is it like  those zebras like catamenial pneumothoraces and weird things like that?

Dr. Mojola Omole:

What did you just say?

Dr. Catharine Allaire:

Correct.

Dr. Blair Bigham:

I remember-

Dr. Catharine Allaire:

Catamenial. Catamenial pneumothorax.

Dr. Blair Bigham:

Catamenial. There we go.

Dr. Catharine Allaire:

Yeah, very good.

Dr. Blair Bigham:

Yeah, it's in the textbook.

Dr. Catharine Allaire:

The catamenial text.

Dr. Blair Bigham:

It's actually a cause of pneumothorax.

Dr. Mojola Omole:

What is this?

Dr. Catharine Allaire:

Yeah. So some patients do have endometriosis on their diaphragm, and quite deeply into it to the point where at the time of their menses it causes a pneumothorax. And so they have repeated or they present with a pneumothorax at the time of menses, and in some people it happens repeatedly. And so that one, because that's a huge red flag for endometriosis obviously.

Dr. Mojola Omole:

Actually, insane.

Dr. Catharine Allaire:

Yeah, it is very insane, but it is quite rare, luckily. But I, of course in my practice, I have seen quite a few because they get referred to me. But generally, it's one of these, definitely a zebra. I would say the deep endometriosis in the pelvis is more common than the diaphragmatic one. And the deep endometriosis in the pelvis can be quite significant. It grows into the sigmoid colon, it can obstruct the distal ureters, it can grow into the bladder.

So those are the really aggressive types of endometriosis that we really want to first of all prevent that patients get to that level of invasion. And secondly, those actually can now be diagnosed better by imaging because we've come to recognize that with good MRI or even good ultrasound, we can see those types of endometriosis in the pelvis. So that's part of the messaging in this paper is that if you have symptoms, such as cyclical rectal bleeding, or cyclical pain with bowel movements, or cyclical blood in the urine, and there's always some sort of cyclicity, you have to think about this and look for it.

Dr. Blair Bigham:

Let's talk more about imaging in the diagnosis. What would sort of the first-line approach be when you have someone whose symptoms suggest endometriosis? Where would a clinician start?

Dr. Catharine Allaire:

Well, I think first thing is obviously a good physical exam. But in some patients, a pelvic exam may not be appropriate. But if it is, looking for signs of endometriosis on physical exam, although it's not perfect, if you see or feel a nodule in the posterior cul-de-sac, that's quite suggestive and really diagnostic of endometriosis. So they tend to be smooth, but blue nodular lesions on speculum. And when you feel them, they feel like pebble-like, or sometimes even bigger. If they're larger nodules, they can feel like a mass in the rectovaginal space. So if you have symptoms like I've mentioned, and you feel these areas, and they're quite tender and there's nodularity, then you should have a very high index of suspicion for deep endometriosis. That being said, with superficial endometriosis, there might just be generalized tenderness on the physical exam, but nothing specific like that. And sometimes you may not find anything on the physical exam.

The next level, I'd say, would be to go to just a regular pelvic ultrasound. So a pelvic ultrasound will allow, first of all, you have a teenager with bad dysmenorrhea, she may have other causes of dysmenorrhea. She may have a Mullerian anomaly, she may have a non-developed uterine horn or something different that's causing the menstrual cramp. So the ultrasound will detect those kinds of things.

Ultrasound will also detect endometriomas, so cysts of endometriosis, very reliably. And so if someone has an endometrioma on ultrasound, basically she has the diagnosis right there. So it's diagnostic of having endometriosis to see an endometrioma. And endometriomas look different than other types of cysts. And really most radiologists can call it that way. So that's why the basic pelvic ultrasound is important.

If that's normal, and there's really no symptoms that are suggestive of deep endo, then it's appropriate to just move on to first line management. But if there's symptoms of deep endo, or there's an endometrioma, then really a secondary line imaging should go to either a pelvic MRI or advanced ultrasound. And she might ask what's advanced ultrasound? We've come to recognize that, again, the basic ultrasound that's performed routinely in our ultrasound units, certainly across Canada, will just look at the basic anatomy, uterus, ovaries, and look for free fluid and look for fibroids, that kind of stuff.

But with an advanced ultrasound, we do what's called a dynamic ultrasound. We kind of move the uterus between the uterus and the bowel to see if there's any cul-de-sac obliteration, which is one of the first things that happens with deeper endo. We trace the bowel looking for nodules of endo on the bowel. We look at the bladder wall, we look at the distal ureters. So we're able to kind of identify a lot of the deep endo, as reliably as an MRI actually with a well-trained person.

Dr. Mojola Omole:

Is it painful?

Dr. Catharine Allaire:

It can be uncomfortable for some patients, but no more than a pelvic exam would be. So yes, we would say that if there's a nodule that's painful, yes, having an ultrasound scanning that nodule may be uncomfortable. So the imaging has come a long way. Unfortunately, the adoption of imaging and the use of imaging is still lacking, certainly in Canada, and we're trying to really advocate for better imaging for these patients.

Dr. Blair Bigham:

If you're at the point where you've done your basic imaging, and you're awaiting something like a pelvic MRI, when do you start therapy? Are you waiting for something definitive, or is there something that you can initiate while you're going down the diagnostic pathway?

Dr. Catharine Allaire:

I totally encourage a first-line provider to initiate treatment. And certainly there's good evidence or moderate evidence based on Cochrane reviews, et cetera, that we can use things like the combined oral contraceptive pills as frontline or first-line management. I would say that there's better evidence for using it continuously than cyclically because patients will often still have dysmenorrhea during the withdrawal bleeds. You can start cyclic, but I think I would go quickly to a continuous regimen in those patients. There are some pills that are marketed continuous and are packaged for three months in our pharmacies that you can use. And part of that first-line management options includes things like Mirena IUDs or progesterone releasing IUDs, as well as progesterone-only treatments, which are more targeting endometriosis, which can be part of the armamentarium of the first line provider.

Dr. Blair Bigham:

And at what point would a family doctor be recommended to refer on to a gynecologist or for some sort of maybe surgical management? When do you start thinking about that?

Dr. Catharine Allaire:

Yeah, that's a very good question. So first line management, if it's tried, and either the patient doesn't respond, or is having adverse side effects, or some patients just don't want to be on hormones and really would rather go the surgical route, then a referral to a gynecologist would be appropriate. Secondarily, if there's really signs of deep endo, like endometriomas or symptoms that are quite suggestive of bowel or bladder involvement, they should also be assessed by a gynecologist.

Dr. Blair Bigham:

Cool.

Dr. Mojola Omole:

Catherine, I had a quick question for you. So when do you consider surgery for endometriosis?

Dr. Catharine Allaire:

Yeah, so surgery is definitely part of the treatment options for patients. The surgery as a diagnosis tool, we're trying to move away from. So we don't want patients coming for a laparoscopy without the surgeon being ready and willing to remove the endometriosis when they're there. So in the past what's happened is there's been a suspicion of endometriosis, patients are taken for laparoscopy, oh, lo and behold they have endometriosis, but the surgeon is ill-equipped, or the amount of disease is too far beyond what they're willing or able to treat at that time. So that really leads to inadequate surgery, very disappointing for the patient, maybe inadequate pain relief.

So surgery as a tool, there's definitely some improvement in pain, and unfortunately, it's not curative. So we would've love it if surgery, you remove every lesion of endo, and that's it. We're done. But unfortunately that's not the case. So that's why we have to use surgery in a very specific way, and try and reserve surgery for the times when such other options may not be helpful. Because endometriosis is a chronic condition, and realistically, this patient might be struggling with this throughout their reproductive life. So we have to have a game plan where we're not doing repeated surgeries on patients.

So when do we do surgery? Well, we'll do surgery when we're unclear about the diagnosis. So the symptoms aren't quite fitting, we're not sure we really are dealing with endometriosis, and we're not really getting anywhere. So that would be a time to do a laparoscopy to sort things out. Secondly, if the patient's not responding well to first line management, and we want to try different options such as surgery. Surgery is an excellent option when a patient's trying to get pregnant because she cannot really use any of the hormonal medications as of course they stop menstruation and ovulation.

And finally, surgery may become the best option for people that have deep endo that's involving bowel, ureter, or bladder. Sometimes there's no choice, you have to go. Patients may present with bowel obstruction at times from these lesions. So of course we don't want them to get to that point, but certainly surgery may be the only reasonable option when we're at that level of disease.

Dr. Mojola Omole:

There was something that was really interesting that you mentioned in the paper, and I'm going to probably get it wrong right now, it was talking about how the overlapping of the neural endocrine pathways for migraine sufferers, irritable bowel, and endometriosis could become a common pathway.

Dr. Catharine Allaire:

Yeah. So there's a condition called chronic overlapping pain condition that's been actually recognized by the NIH as a really specific condition that occurs mostly in females, and it consists of multiple pain conditions that tend to coexist, and probably have some sort of common background which is likely related to nociplastic pain or central sensitization. And endometriosis was listed among those conditions, which was interesting to me.

And we do see this overlap often between endometriosis, irritable bowel syndrome, chronic migraines, chronic fatigue. And I think it's really a result of the nervous system being overtaxed over time with these pain conditions. And you'll often see one pain condition start, and then a few years later a second pain condition, and then eventually there's a number of overlapping pain conditions that occur. And by then we're dealing really with nociplastic pain process, meaning that there's been some fundamental kind of alteration in the pain processing. And we have to deal with the central nervous system and the brain part of the pain as opposed to just treating peripheral nociceptors only. I mean, of course you have to treat the peripheral nociceptors. If someone still has endometriosis, it has to be treated, but you also have to address the nervous system part of it, or else you're not going to see much improvement in the chronic pain situation.

Dr. Blair Bigham:

You've hit all these topics that I think really give me a lot of confidence in being able to extend my chronic pelvic pain or my periodic pelvic pain workup, particularly in the emergency department. I hope family doctors would feel the same way about this. Aside from directing people to your paper, which is beautiful and concise and really helpful, what are your top one or two messages that you want everybody to hear about endometriosis?

Dr. Catharine Allaire:

So I would say the first thing is please acknowledge and validate women's pain or female bodied people's pain. And don't assume that it's just a normal phenomenon. If pain is interfering with their quality of life, pay attention, and work with your patient to find the solution for that, and appropriate referral if necessary.

The other thing being that we need more research dollars and more money to put into this condition. And I don't know that that's something our physicians can do, but I think advocacy is required and is definitely ongoing to increase how many research dollars are put into understanding endometriosis as well as better treatment options for patients that are non-hormonal, for example. And thirdly, access to better surgical care, because some of the surgeries for these patients can be extremely challenging when we're dealing with deep endo. And there's only certain centers in Canada that are doing them and have expertise in doing them. And it's very difficult for patients to access those. So there's really a lot more needed in this area.

Dr. Blair Bigham:

And the earlier you catch it and the earlier you treat it, the less likely they end up in that situation.

Dr. Catharine Allaire:

That is definitely the thinking and the hope. And I think that's the biggest message as physicians, if someone tells us they're in pain, then we have to believe it even if we don't find anything objective.

Dr. Mojola Omole:

I also think that with female-bodied people, we've just been told for all our lives that everything's supposed to be painful, and that pain is just a normal part of just having ovaries.

Dr. Catharine Allaire:

I know. Isn't that horrible? It's just it's beyond-

Dr. Mojola Omole:

Even I would say that too. Because I just assumed that every pelvic exam is supposed to be painful, that periods are supposed to be painful. That childbirth, that was extremely painful. But it's just been taught to us that the pain is normal and that we should experience pain. And that experiencing pain is the rite of passage.

Dr. Catharine Allaire:

Yeah. That comes from some deep social constructs, and even biblical kind of constructs really when you look at it. So it's like the woman should experience pain and childbirth, et cetera. It's so passe. It is so it needs to be removed from our social norms and our social acceptance. And it's going to take a lot of time to change that. But that's the messaging that really we need to change in our young girls. So we are trying to do that by addressing teenagers in high school. So we had a high school education program on endometriosis.

So we did a pilot study in three high schools in BC, and delivered a one hour menstrual education and endometriosis program. And it was really fascinating because, of course, it was quite effective at improving their knowledge about endometriosis, but also about the acceptance of pain as being normal. And so we delivered it to both boys and girls, and questioned them all. And of course the boys' knowledge dramatically improved.

And some of the interesting comments we got were like a boy saying, "Now I know that my friend Julie's having bad periods and missing school is not normal." And so I thought, well, that is so cute and so interesting and so great that we can get that knowledge early on to both genders, or all genders, because it's basically so important to take that messaging away that, oh yeah, you're just having your period. It's normal that you're missing school, right?

Dr. Blair Bigham:

Catherine, thank you so much for your time today. This has been fantastic. Dr. Catharine Allaire is a clinical professor at UBC's Department of Obstetrics and Gynecology and author of the CMAJ paper, Diagnosis and Management of Endometriosis.

So Jola, you've suffered from endometriosis. What do you think about what we just heard?

Dr. Mojola Omole:

I thought it was really great. I have other friends who also have endometriosis, and their path through diagnosis and treatment is very similar to Hannah's. I would say that one part of it which seems to come up is maybe patients don't realize how much of this is hormone mediated. When Dr. Allaire brought up the fact that, and it was also in the paper, that there seems to be a cluster of entities like chronic migraines, IBS, and endometriosis that have kind of endocrine neural different pathways, that a lot of this is hormone-mediated.

And if it's hormone-mediated, the answer is going to be hormonal treatment. And a lot of people are very nervous about going on hormonal treatment. For me, it has completely done a 180 in terms of my symptom management. And so I do think that there needs to be more education to people who have endometriosis and also to physicians when talking about the role that hormones play in this process.

Dr. Blair Bigham:

And I think what I took away was how hormone therapy could so greatly reduce the suffering that people have in this interim period of waiting and waiting and waiting for an expert or for a specialist appointment just to say, "Oh, yeah, sounds like you have endometriosis. Let's give this a try." And so maybe this is something that could more easily be done by general practitioners to get people identified earlier and on some sort of treatment earlier in hopes that it goes from 10 out of 10 impact on your life to more of a two on 10.

Dr. Mojola Omole:

And I also think that a part that I never appreciated was that the longer you have the endometriosis untreated, the higher the stage. It can become stage four disease, right? And you have deeper endometriosis. So it almost seems as if the delay in diagnosis and the delay in treatment does negatively have a long-term consequence. And I'm not sure if that's well-communicated that, if you don't treat this now, this disease is going to progress and can get worse.

Dr. Blair Bigham:

Or where you get more of that nociplastic pain or those chronic pain syndromes that are sort of ancillary to the endometriosis itself. Early recognition, early treatment. Well, Jola, thanks for sharing today, and I'm glad that Hannah was able to share her story as well.

Dr. Mojola Omole:

For sure.

Dr. Blair Bigham:

That's it for this week on the CMAJ Podcast. We'll see you in two weeks time with another episode. In the meantime, please do share or like our podcast, wherever it is you download your audio. I'm Blair Bigham.

Dr. Mojola Omole:

I'm Mojola Omole. Until next time, be well.