19 - Endometriosis in the Adolescent

We trace the line from “bad cramps” to a careful, compassionate evaluation for endometriosis, showing how physiology, history, and practical treatment choices restore a teen’s daily life. Evidence, empathy, and clear steps help shorten the long road to relief and reduce missed school and stress.

• defining primary and secondary dysmenorrhea and why prostaglandins matter
• prevalence figures and diagnostic uncertainty in adolescents
• first line management with timed NSAIDs and continuous hormonal therapy
• what to ask in the menstrual and symptom history
• when to suspect endometriosis after failed therapy
• broad differential including GI, GU, musculoskeletal and psychological causes
• limits of labs and imaging and the value of diaries
• multimodal care: PT, TENS, CBT, neuropathic agents
• GnRH options with add back and prudent use of surgery
• staging limits and mismatch with pain severity
• mental health, trauma awareness and inclusive care for trans patients

What is PAG?
Pediatric and Adolescent Gynecology is a subspecialty of OBGYN (2 year fellowship) focusing on reproductive healthcare for children and young adults. It fills the overlap between general gynecologists and pediatricians. It is a multi-disciplinary field involving work with pediatric endocrinology, dermatology, hematology, surgery, ect. Go to NASPAG.org for more PAG educational resources.

Want to test your knowledge?
PAG WebEd cases are a great way to review our podcast content. 

Transcript

Case Introduction: Severe Cramps At 16

SPEAKER_00 0:00

A 16-year-old Gravita Zero patient presents with dysmenorrhea, otherwise known as menstrual cramps. She had her first period at age 12 and she has noted worsening cramps, particularly on the left side, since menarchy. She takes ibuprofen 600 milligrams with her periods three to four times a day and has also been taking a 30 microgram combined oral contraceptive pill for the last six months. Unfortunately, she's not experiencing significant improvement with this regimen. She denies constipation. She is missing school and extracurricular activities on the first and second day of her period due to severe pelvic pain, which she describes as a nine out of ten. Hi everyone. Welcome to Pag Over Pastry, a 20 to 30 minute podcast which reviews important topics in pediatric and adolescent gynecology. I'm Susan Kaufman. I'm a pediatric and adolescent gynecologist at Virtua Health in South Jersey.

Meet The Hosts And Source Material

SPEAKER_01 1:07

And hi everyone. I'm Agenie. I'm a PAG Fellow at the NIH in Bethesda, Maryland, and at Children's National Medical Center in DC. Thanks for having me.

SPEAKER_00 1:19

Today we'll be talking about dysmenorrhea and endometriosis in the adolescent female. Our reference is the NASPAG Essentials Pediatric and Adolescent Gynecology book, which was published by NASPAG. We're using chapter 10, and the authors for that are Christina Davis, Cannes Namage, and Alavash Margida. And what's your favorite pastry?

SPEAKER_01 1:45

For me, it's probably anything almond, so maybe I'll go with almond croissant.

Defining Dysmenorrhea And Endometriosis

SPEAKER_00 1:50

All right, let's get started. Dysmenorrhea is defined as pain that occurs with menses, and it can be described as abdominal or pelvic cramps. And we have both primary and secondary types of dysmenorrhea. So primary is the presence of pain before or during menstrual cycles without underlying pathology. And secondary dysmenorrhea is the presence of pain before or during cycles with an underlying pathology, such as endometriosis. Endometriosis is a condition where the endometrial cells, which are normally found in the uterine cavity, are located outside the uterus in the abdominal cavity. This is such an important topic because adolescents may feel that there is something wrong with them when they have cramps or pain with their periods and often present to a medical provider for evaluation. And they may go to the emergency room, urgent care, their primary care physician, or a gynecologist. Let's start with what is the prevalence of dysmenorrhea and endometriosis in our female population?

Prevalence And Why It Matters

SPEAKER_01 3:08

The prevalence of dysmenorrhea and endometriosis does vary. We see dysmenorrhea in approximately 16 to 93% of patients. In terms of endometriosis, we know that 10 to 15% of reproductive age women will have endometriosis. And as many as 35 to 50% of patients with pelvic pain in their reproductive years will have endometriosis. Importantly, though, we don't know the prevalence of endometriosis in adolescents. But the majority of patients will end up having endometriosis when we go in during a laparoscopy because they've had such extensive pains that they opt for surgical diagnostic laparoscopy. The question that I always get is why do periods hurt? And so what is the etiology of primary dysmenorrhea?

unknown 4:00

Okay.

Prostaglandins And Pain Mechanisms

SPEAKER_00 4:01

Yes, that's a common question that both patients and parents ask about. So the cramps that are occurring with the period are linked to two prostaglandins, which are manufactured primarily by the uterus, F2 alpha and E2. And these prostaglandins are manufactured as a result of ovulation and the changes in estrogen and progesterone. And the prostaglandins are thought to trigger an inflammation cascade that leads to myometrial hypercontractility, which of course results in intense cramps. Also, there may be some hypoxia and ischemia of the uterine muscle, which contributes to the pain. Not only do the prostaglandins contribute to hypercontractility and increased pain, but they may also cause nausea, vomiting, and diarrhea, as some of the symptomatology of primary amenorrhea. So if we assume that somebody has primary dysmenorrhea, what is the treatment for that?

First-Line Treatments And NSAID Choices

SPEAKER_01 5:12

So we usually start with timed NSAIDs, with or just prior to the onset of pain, and then to continue throughout the pain. It makes a lot of sense because NSAIDs would specifically lower the peripheral prastaglandin levels, like you had just mentioned. And so this tends to work well. If that isn't enough for pain control, then we will often offer hormonal preparations to help suppresses. And so things like pills, patches, rings, even injections, an implant, an IUD, all of those are potential options and next steps.

SPEAKER_00 5:52

Do you have a favorite NSAID that you recommend to your patients?

SPEAKER_01 5:56

I like Motrin. I like a good old-fashioned ibuprofen personally, but we have had great results with neproxen. So what about you?

SPEAKER_00 6:06

I mean, ibuprofen also helps to decrease the menstrual flow. So that's advantageous. But neproxin is a longer-acting medication. So it can be dosed twice a day instead of three to four times a day, which makes it easier for the adolescent to take, especially when they're in school. So what do we need to consider when we are making the diagnosis of primary dysmenorrhea?

History Taking And Red Flags

SPEAKER_01 6:33

Uterine cramping during menses really is common. So sometimes it's a bit tricky to determine at what point the pain is normal versus abnormal. It's very important to get a very good menstrual history. So onset of menarchy, cycle length, regularity of cycles, onset of pain during the cycle, has it been getting better or worse? And then the location of the pain, the frequency and the length of pain.

SPEAKER_00 7:02

Right. And the additional questions that I always ask my patients are: are they voiding regularly? And are they having regular, non-constipated bowel movements? Because if they're holding their urine all day, if they're holding their stool all day when they're in school, that can increase the intensity of their pain as well.

SPEAKER_01 7:24

Typically, primary dysmenorrhea will improve with scheduled NSADS or hormonal medications. So if it doesn't, then we need to be thinking about other causes.

SPEAKER_00 7:35

Yeah. Tell me about the common symptoms that an adolescent might experience with primary dysmenorrhea.

SPEAKER_01 7:42

It's usually associated with pain that starts one to two days prior to menses and then lasts for a couple of days.

SPEAKER_00 7:51

And it may not start initially right after menarchy, particularly if somebody's having irregular cycles. So someone may come in two, three years after menarchy and say, Well, I never had cramps my first two years, and now I have bad cramps.

Broad Differential For Pelvic Pain

SPEAKER_01 8:08

So then if we have a patient that has this kind of pain and we start with NSADS and hormonal therapies, and their pain does not really resolve, what in your experience is the most likely diagnosis?

SPEAKER_00 8:22

We definitely have to rule out obstructive anomalies because they can be a cause of secondary dysmenorrhea. And we absolutely have to consider endometriosis. I think the medical profession is finally coming around to realizing that because I think in the past nobody considered endometriosis in teenagers, especially very young teenagers like 10, 11, 12-year-olds. So we are certainly becoming more aware and putting that at the top of our differential. Okay, so if we have somebody with either very, very severe menstrual cramps that start a week before their period and last throughout the period, or they have severe menstrual cramps and pain in between, or maybe some bower bladder symptoms, what is the rest of our differential diagnosis besides endometriosis?

SPEAKER_01 9:19

So the differential diagnosis of pelvic pains is going to be very broad. Some of the things just to keep in mind, there are, of course, GI etiologies like appendicitis, IBD, constipation, IBS. There are GU causes like cystitis or painful bladder syndrome, musculosolidal causes like fibromyalgia or pelvic floor dysfunction or bone or joint inflammation. And then there are also psychological causes. So anxiety, depression, somatization, and some substance abuse. And then, of course, there are other GYN causes outside of endometriosis to keep in mind, like adenomyosis, for example, or adenoxyl torsion. So variant cysts can cause pelvic pain, ectophic pregnancies, malarian anomalies, like we discussed, and PID vaginismo.

SPEAKER_00 10:16

All right. So what are some of the symptoms of endometriosis?

Endometriosis Symptoms And Variability

SPEAKER_01 10:22

The symptoms associated with endometriosis can be very vague. They can also be varied. So there are a few symptoms that we see more commonly than others. And so things like pain associated with menses, but also outside of menses, so both cyclical and non-cyclical pain. And then there's the 3Ds pneumonic of, you know, dysmenorrhea, dystesia, dysperunia. I often hear that my adolescent patients describe nerve-like pain, so shooting pain down the backs of their legs, pins and needles in the pelvic region, also. But we often see dysuria as well, nausea, constipation, diarrhea is common. We often see migraines as well. Anything else that you find?

SPEAKER_00 11:10

Um, well, depending on how deep in the pelvis the endometrial implants are, I've had patients describe a lot of leg pain, both anteriorly and posteriorly. Yeah. With their periods. Yeah. And what's also so interesting about endometriosis is you can have diffuse endometriotic implants in your abdomen and have no pain. And you can have what's a visible few spots and maybe deep endometriosis that we just can't see, and people can have really severe pain.

SPEAKER_01 11:49

Yes.

SPEAKER_00 11:50

So why do people have endometriosis? Because once we start talking about that, that's the first question they want to ask.

Theories Of Disease And Genetics

SPEAKER_01 11:58

We're not entirely sure. There are many different theories. The easiest for me to conceptualize is the Samson's theory, the retrograde menstruation. So the idea there is that fragments of the endometrium travel backwards or retrograde through the fallopian tubes during menses, and then the endometrial tissue implants in the pelvis. And when the implants bleed, that causes inflammation and pain. But there are other possibilities. So there's Meyer's theory where to potent cells exist in the body and those can transform into endometrial tissue cells or Hallman's, I might be mispronouncing these names, but Hallman's theory is when endometrial cells can travel around the body through the vasculature or through the lymphatic system. There's also a theory about deficiency in cellular immunity in some individuals that just allows for that proliferation. And then, of course, there's also genetic predisposition because we do know that there's a seven times higher risk of endometriosis in someone who has a first-degree relative that has endometriosis.

SPEAKER_00 13:06

So what else do we want to look at along with endometriosis?

Comorbidities And Chronic Pain Links

SPEAKER_01 13:13

Well, endometriosis can be associated with many other chronic conditions and pain conditions, as we had mentioned earlier. Some common ones are fibromyalgia and chronic fatigue syndrome. We also see lots of POPs as well. I'm not sure if you do as well. So what can lead someone to make the diagnosis of endometriosis ultimately?

Diagnosis Strategy And Delays

Labs, Imaging, And Their Limits

SPEAKER_00 13:40

Certainly somebody coming in with severe menstrual cramps, I think the most of the time the first thing we're going to think of is primary dysmenorrhea. But we need to keep endometriosis in the back of our minds, especially if they are failing therapy. Certainly if somebody comes in with pelvic pain in between periods, pain with bowel movements, bladder symptoms, and severe cramps, then the possibility of endometriosis is going to move higher up on that initial differential diagnosis list. So often it's helpful for the teenager to keep a pain diary because they can't always describe all the symptoms that they're having. A physical exam will be helpful. So when we're doing, for instance, an abdominal exam and we want to see where they're tender and are there any trigger point areas. We don't always do pelvic exams, in fact, rarely do pelvic exams in teenagers that are not sexually active. And we have other ways to screen for obstructive anomalies, certainly with ultrasound and MRI. Back in the day, we were taught that a pelvic exam was very helpful in the diagnosis of endometriosis because we might feel nodularity in the posterior cul-de-sac, uh, anterior to the uterus under the bladder or on the uterosacral ligaments. But I don't think that that's necessary for diagnosis in a teenager. And also in early stages of endometriosis, which are more common in teens, we don't necessarily find those physical findings. Unfortunately, it there's such a delay in diagnosis. And I was mentioning that before when I said that the medical community is certainly becoming much more aware that this disease can exist in teenagers. And one statistic given for a delayed diagnosis is up to 12 years, which would make sense if you're seeing somebody who's 12 or 13 with severe menstrual pain, maybe pain in between their periods, and it just keeps getting written off as, oh, this is just due to your period, due to your period, and nobody's thinking farther than that. And finally, this person reaches their early 20s and they finally get a diagnosis of endometriosis. Also, it's well known that patients will see multiple practitioners before a diagnosis is actually made. So one of the things we do in PAG is try to prevent that from happening and try to educate both our patients and other medical providers that this diagnosis should be considered in adolescence.

unknown 16:38

Absolutely.

SPEAKER_00 16:39

What about laboratory studies? Everybody wants a blood test or an imaging study to make the diagnosis.

SPEAKER_01 16:45

Yeah. So as of as of yet, there are no specific blood tests that we can use to diagnose endometriosis. Certainly, if a patient comes in and you're concerned about endometriosis, we should make sure to rule out everything else, like pregnancy and sexually transmitted infections. Definitely a CBC or an ESR and CRP can be helpful if we're worried about infection. And then foul symptoms, maybe diarrhea, abdominal pain, weight loss, that we should just make sure we consider things like celiac disease as well. But no, right now there are no lab studies we can use to diagnose endometriosis. What about imaging for endometriosis?

SPEAKER_00 17:30

Ultrasound is really not very sensitive for endometriosis, but it does rule out other secondary causes. MRI is not very sensitive at this point, although some radiologists feel that they can visualize endometriosis on the MRI depending on where it's located and how dense it is.

Empiric Management Over Early Surgery

SPEAKER_01 17:52

So what do you do when you feel like someone has diagnosed endometriosis or clinically diagnosed endometriosis, I should say? So what treatments do you use?

Hormones, PT, Neuromodulators, And TENS

SPEAKER_00 18:04

Generally, we don't use surgery, laparoscopy as a first step. If we can avoid surgery in a teenager, that's the prevailing philosophy at this time. And that's because we want to prevent them from going through a cycle of surgery after surgery after surgery, you know, even before they're thinking about pregnancy, and we want to avoid the complications of surgery. And when you weigh the risks of empiric treatment versus the complications of surgery, certainly the complications of surgery outweigh the risk of empiric treatment. And what I always tell my patients are we are not putting a band-aid on your pain and we are not neglecting your pain. If I'm treating them with an NSAT or a hormonal medication or some of the other things we're going to mention in a moment, then we are really focusing our treatment on all possible causes, and if we are successful in alleviating their pain, then we are getting to the root cause of their pain. And I also stress that even if somebody ends up with a laparoscopy and a diagnosis, the treatment after that is still hormonal therapy, or some of the others we're going to mention in a moment. Absolutely. Do you want to go through some of these treatment options?

GnRH Options And Add-Back Therapy

SPEAKER_01 19:28

Sure. So first line is similar to for primary dysmenorrhea. So scheduled NZEDs can definitely be used as first line. And sometimes we can use adjuncts to this as well, like even just patient education about when and how to use timed NSADs. Sometimes we can have even add in pelvic floor PT or trigger point injections. These are all kind of adjuncts that we can lean on early on. And then hormonal preparations. And like we had mentioned before, there are. Usually prescribed to suppress the menses. So usually in a continuous fashion. And this is so we can keep that endometrial lining thin. And sometimes we're suppressing ovulation altogether. But the key thing here is that it needs to be tailored a bit to the individual patient because, you know, even though we have lots of different hormonal preparations, not all of them will fit the patient's individual needs. So some of our patients really don't like taking pills or can't take pills. And then others, for example, have never used a tampon before and hate the idea of a vaginal ring for a hormonal treatment. So lots of different options here that we can tailor to our patients. There are some other medications that we offer our patients as well, sometimes neuropathic medications like amitryptaline can be helpful, especially if they're mentioning nerve-like pain that typically can help. And then we have on occasion recommended the TENS units, the transcutaneous electrical nerve stimulation units, which deliver an electrical impulse to change the pain perception. And that has actually helped many of our patients as well. CBT is another great treatment option that we can consider in addition to mindfulness trainings and acupuncture.

Surgical Approach And Staging Nuance

SPEAKER_00 21:18

And then, of course, we we talked about surgery. You know, in the past, we would go to surgery before we would go to either a GNRH agonist or antagonist. But now I think we will go to one of those medications if somebody is failing pain medication and hormonal medication even before surgery. And certainly ACOG endorses the use of those medications even before surgery, if the patient and her parent is agreeable to that. So we have the GNRH agonist, including lupride and the farolin. We have the antagonist, including a Galilix. And with Lupron, we generally use ADBAC therapy. We used to use combination oral contraceptive pills. Now we primarily use a progesterone, specifically northendrone acetate, because part of that is metabolized to an estrogen-like compound. So we're getting progesterone as ADBAC to help protect the bones and maybe offset some symptoms they may have from lack of estrogen and also a little bit of an estrogen effect. With the two GNRH antagonists that we have, one of them requires ADBAC, one does not, but I have on occasion used ADBAC with both of them if somebody is symptomatic. And then if we end up going to laparoscopy at any point in this list of treatment options, there is some controversy about how to approach the surgery once a diagnosis of endometriosis is made at the time of surgery. Some people will just do ablation and some people will do resection. And there was a great study by Dr. Mark Loffer et al. out of Boston Children's looking at this. His conclusion was that extensive resection is not appropriate in adolescent patients. So what are your thoughts?

SPEAKER_01 23:32

Well, surgery can certainly relieve pain for some patients. It's definitely not our go-to. However, it is sometimes very important for patients to get a formal histologic pathologic diagnosis. And so if conservative treatment fails for let's say six months or so, we we will offer diagnostic laparoscopy and directed peritoneal biopsies for certain patients.

Adolescent Presentation And Lesion Types

SPEAKER_00 23:59

Okay. And does endometriosis look the same in everybody, regardless of their age?

SPEAKER_01 24:06

No, it doesn't. In early endometriosis, it does seem like there's many more of these smaller lesions. They're maybe one to three millimeters in size. It can be clear, they can sometimes be a little red, and they're vesicular lesions. They're kind of scattered throughout the peritoneal lining. In older patients or in endometriosis that has been around for longer, they do often appear more like powder burn lesions. Sometimes they're puckered black lesions. Sometimes you can see white areas of scarring. Sometimes you can even see windows in the peritoneum. And then the most obvious endometriomas are those chocolate cysts.

SPEAKER_00 24:51

Yeah. And if you're doing a laparoscopy on somebody, how are you going to describe or stage their endometriosis?

Mental Health, Trauma, And Inclusion

SPEAKER_01 25:01

So first making a very systematic evaluation of the pelvis is really helpful in characterizing and staging endometriosis. So documenting the size and the location of each and all of the lesions will be helpful. And trying to assess if they are superficial or deep, if there are adhesions that are filmy or if they are denser. And then there are staging tools. There's an ASRM revised classification that we can use. It's also a really convenient AAGL app that I love.

SPEAKER_00 25:35

And it certainly helps if somebody needs a future laparoscopy to be able to compare what somebody's seeing now to what was seen even, you know, five years ago.

SPEAKER_01 25:45

Yeah. I found that it's really helpful for providers to have a way to communicate to one another via the stage. But we do know that staging doesn't seem to correlate very well to patients' actual pain.

SPEAKER_00 25:59

Correct. And it doesn't correlate to their response to treatment necessarily.

SPEAKER_01 26:04

Right, right.

SPEAKER_00 26:05

Okay.

SPEAKER_01 26:06

What other considerations should we think about in adolescents with pelvic pain or endometriosis?

SPEAKER_00 26:14

Okay. Well, there's a high incidence of anxiety and depression. And this is not surprising because if you're living with chronic pain or you're living with debilitating periods that cause you to miss school, miss activities, miss going out with your friends, it only makes sense that you are going to feel anxious and depressed. And certainly that needs to be addressed as part of the treatment program. So not only medications, possibly surgery, but sometimes counseling is needed as well. We have to also be mindful of self-treatment with uh substances like marijuana or other substances that teens can get their hands on. So we might be treating them, but they may also be self-treating. And then there's been some association with ADD, ADHD as well. And that would be a counseling piece and perhaps another medication. What else do we need to consider?

Case Resolution And Resources

SPEAKER_01 27:22

So we know that early life abuse, sexual and physical abuse has been associated with an increased risk of endometriosis. So there may be an association with early traumatic experiences sensitizing perhaps the central stress response system in some of these patients. And so that's something we definitely need to consider.

SPEAKER_00 27:45

Right. And we also have to be mindful that our trans patients, even the ones on testosterone, can have active endometriosis and accompanying pelvic pain and other symptoms from endometriosis. All right. So would you like to make some summary comments for our listeners?

SPEAKER_01 28:06

Sure. I think good care for endometriosis really requires a big multidisciplinary approach with the involvement of multiple specialties and multiple treatment modalities, potentially.

SPEAKER_00 28:18

Yep. And also not writing off or dismissing our patients who are telling us that they're experiencing pain, whether it's primary dysmenorrhea, which can be quite severe, or secondary dysmenorrhea due to endometriosis or any of the other causes that we mentioned. So back to our case. So this 16-year-old has tried conservative treatment with scheduled NSAIDs and an oral contraceptive pill without significant relief. She also has dyschisia. So given her persistent severe symptoms, a laparoscopy would be the next step in her treatment protocol. So she goes and has a laparoscopy and is diagnosed with stage two endometriosis. The lesions were resected and she had a levonogestural IUD inserted at the same time. At her three-month checkup, she is doing much better and not missing school or any activities. For more information and for an outline on this podcast, please visit Pag Over Pastries on the NASBAG website. And if you have any questions for our speakers today, please feel free to email us at Pagital P A G over Pastries at gmail.com. Thank you so much, Eugenia, for recording with me. This has been great. And thank you to our listeners. And I hope you'll check out some of our other Pag Over Pastries podcasts.

SPEAKER_01 29:56

This was fun. Thanks so much.