Endometriosis: A Disease of Adolescence:
For most of the modern age, there was a long-standing myth that endometriosis was a disease affecting mostly adult women. However, endometriosis is actually a disease of adolescence, a fact Dr. Camran Nezhat has been publishing about and teaching his students for many years .This observation was also made by ancient physicians from more than 2,500 years ago, who reported on an endometriosis-like condition referred to as the ‘disease of young girls’, or the ‘disease of virgins’ because they noticed that it seemed to be more common in young girls who had begun menstruating.
Today, studies have now confirmed that endometriosis is the most common cause of chronic pelvic pain in adolescent girls, and period pain continues to be the leading cause of school absences in adolescent girls.
Recent retrospective studies found endometriosis in 70% to 73% of adolescents with pelvic pain that was unresponsive to medical therapy, while another study by Dr. Marc Laufer, found the incidence to be 95%. The youngest girl with endometriosis reported in the literature was age 7, while Dr. Nezhat’s youngest patient so far was nine-years old.
Endometriosis has a familial component to it, with studies showing that those with a first degree relative with endometriosis (such as mother or sister) are 5 times more likely to develop the disease themselves. As for other risk factors which may predispose women and girls to endometriosis, some of the strongly associated factors include early menstruation (i.e., menstruation which begins in pre-teen girls), periods lasting longer than 7 day, and heavy and/or irregular menstruation.
Rare Premenarcheal Endometriosis
Although rare, it’s also important to point out that there are cases of premenarcheal endometriosis; that is, endometriosis which develops before menstruation begins. A handful of cases of endometriosis in neonates (new-born infants) have also been reported.
Such cases of premenarcheal endometriosis often strike people as surprising, since endometriosis is so commonly described as a disease of reproductive-aged women (i.e. those who are menstruating). However, just as endometriosis can occur in postmenopausal women, it is also true that it has been found in girls who have not yet menstruated.
This is just one of the many reasons why endometriosis is considered so enigmatic, with well-regarded medical researcher, Matthew Rosser, describing its perplexing nature akin to “sticking your head in a washing machine filled with Salvador Dali and M.C Esher paintings.”
Symptoms of Adolescent Endometriosis
Some of the most common symptoms of endometriosis in pre-teen and teenage girls are:
- Pelvic (abdominal) pain near or during menstruation
- Pelvic pain any time during the month
- Heavy periods
- Irregular periods
- Early onset of menstruation (pre-teen)
- Pain with bowel function
- Pain with bladder function
- Chronic gastrointestinal symptoms like vomiting, nausea, diarrhea, and constipation
- Back pain
- Pain with pelvic exams
- Pain with sitting
- Pain which radiates down the legs
- Pain which mimics appendicitis
- Pain which mimics colitis, Crohn’s, or Irritable Bowel Syndrome
- Pain which mimics celiac disease
- Pain which mimics interstitial cystitis
Even though this list of symptoms is similar to those of adult endometriosis, symptoms of adolescent endometriosis can present somewhat differently than those found in adult women.
Usually adolescent girls experience symptoms beginning with their first period. However, others may not notice symptoms until a few years later.
As with adult patients, the symptoms of endometriosis in girls can by cyclic, acyclic, or constant. Having cyclic symptoms means that pain is experienced in predictable, consistent intervals, synchronously with menstruation and/or ovulation.
Acyclic Endo Pain More Common in Adolescents
Acyclic means that the pain and other symptoms may occur in irregular patterns, at any time during the month, or even constantly. Though studies are still far from conclusive, it does appear that adolescent girls with endometriosis appear to experience acyclic pain more often than adults. This is why it’s especially important for patients to seek out an endometriosis specialist, as non-specialists are not always familiar with these variances in disease expression between adult and adolescent patients.
There are also cases of asymptomatic or silent endometriosis in adolescence, when the girl doesn’t feel any typical symptoms, but disease is present and causing damage.
In such cases, endometriosis is only discovered incidentally; for example, when the patient undergoes surgery for a different reason or sees a doctor who suspects endometriosis due to other clinical symptoms that were not noticed by the patient.
Others remain putatively asymptomatic and only discover they have endometriosis when seeking medical care for fertility concerns.
Such cases do present a clinical dilemma. However, even if there are no apparent symptoms, if endometriosis does run in the family, health evaluations during adolescence would still be advisable, as careful clinical assessments by specialists can often uncover signs and symptoms that the patient may have missed or dismissed as normal. In some cases, too, adolescent patients may be reluctant to speak up about symptoms, but with more awareness, hopefully more might be encouraged to seek help in such cases.
Like adult patients, adolescent girls can also develop endometriomas, the medical term for endometriotic cysts of the ovaries. Therefore, ovulation can be painful, with acute pain occurring on the sides of the abdomen – sometimes only on one side, other times alternating each month between the left and right side. And, contrary to popular myth, adenomyosis – a related disease often referred to as endometriosis of the uterine wall – can also occur in adolescent patients.
The stages of endometriosis may also be different in adolescent girls, with few presenting with the most advanced stage of endometriosis – stage IV. For example, one study found no cases of stage IV disease in their cohort of adolescent patients, and instead found stage I to be present in 68% of the cases, stage II in 20%, and stage III in 12% of the cases.
The lesions found at surgery may also present differently. For example, instead of the typical “chocolate” or black powder burn lesions commonly found in adult endometriosis, adolescent endometriosis tends to show up as clear vesicular lesions, or as red, white, and/or yellow-brown lesions.
Red or clear (or non-pigmented) lesions are especially more biologically active than the black, puckered lesions associated with old blood and old activity.
Lesions which are biologically more active also tend to exhibit more active vascularization (i.e. angiogenesis). Furthermore, these red and clear lesions do not usually have the characteristic sclerosis or fibrosis in the surrounding areas as is found in older lesions in adults.
These are just a few of the many reasons why endometriosis can be easily missed by surgeons who do not have enough experience with treating pre-teen and teenage girls, as they may be unfamiliar with these different colors, shapes, and forms of endometriosis
Endometriosis Commonly Misdiagnosed in Adolescent Girls
Despite its prevalence in adolescent girls, endometriosis continues to be misdiagnosed in this population, almost as a matter of routine.
There are several reasons why this continues to occur. One of the most common reasons is that adolescent girls are often told that periods are supposed to be painful. Some minor cramping is considered normal by most (though this assumption is now being challenged). However, pain that forces girls to miss school or other activities is not normal and should be evaluated by a medical professional.
Of course, having two categories of pain (one considered normal, one not) is problematic in and of itself, because young girls – and physicians alike – often cannot tell the difference. In fact, some may not report their pain because they assume it’s the “normal” type. As a result, girls often suffer in silence, for fear of being labeled as weak for being unable to handle so-called “normal period pain”, pain that their peers appear to be managing with ease.
Given that so many misdiagnoses stem from confusion over what constitutes normal vs. not normal pain, Dr. Nezhat believes it’s time to challenge the notion that there is such thing as “normal pain” or “normal period pain.” Instead, Dr. Nezhat is trying to change society’s idea that pain with menstruation is normal and advises that all pain should be evaluated as soon as symptoms develop, especially in adolescent patients who may downplay their symptoms in an effort to fit in or avoid being labeled.
The fact that endometriosis rarely shows up on diagnostic tests, such as MRIs, ultrasounds, colonoscopies, barium tests of the bowel, or blood tests, is another major contributing factor in the high rates of misdiagnosis experienced by endometriosis patients. Without a non-invasive diagnostic test, this means that patients must undergo a laparoscopic surgical evaluation in order to definitively diagnose endometriosis.
As a result, parents (and physicians, too) hesitate to put their daughters through an invasive surgical procedure without further testing or ruling out other potential conditions.
Those who experience menstruation at an especially early, pre-teen age –between the ages of 9-12 for example – may also experience difficulties in getting diagnosed and receiving the proper care because so few in the general public, as well as the general medical community, realize that endometriosis can affect girls at such a young age.
Other health risks have been associated with early onset menstruation, so our team considers it important to be aware of these epidemiological findings to help provide the most comprehensive and timely care possible.
As you can see, there are definitely obstacles that often make diagnosing endometriosis in young girls very difficult for non-specialists. However, it’s important to get a diagnosis as early as possible, since endometriosis can be a progressive disease.
Teens and adolescents should not be missing days from school and activities because of pain associated with their menses. If your adolescent daughter complains of severe pain with menstruation or has to change her lifestyle around her time of menses, then she should be evaluated for endometriosis or other potential causes of chronic pelvic or whole-body pain.
Although endometriosis is one of the most common culprits, there are other causes of chronic pelvic pain in adolescent girls. However, endometriosis should definitely always be considered as part of any differential diagnosis and should be ruled out before considering other, less common diseases.
What to Expect During Your First Visit
As mentioned, endometriosis is known to be a progressive disease. Therefore, its early diagnosis and treatment is crucial, to prevent endometriosis from advancing and causing further pain, scar tissue, organ damage, and/or future issues with fertility.
However, we know that going to the doctor can be a very stressful experience. This is why at our Center, our entire team takes the time to listen to any concerns you may have and works with you to ensure that you know what to expect during the initial consultation and are comfortable every step of the way.
Painful Pelvic Exams?
We also know that pelvic exams can be very painful for girls and women with endometriosis. This is so common in fact, that our entire team has been specially trained to help reduce any discomfort as much as possible and provide the compassionate, caring, and individualized medical care that you deserve.
Diagnostic First Steps
The first step that Dr. Nezhat takes during an initial consultation is to ask you about your medical history and listen to any concerns you may have, including about the diagnostic process, treatment options, and long-term prognoses. After this, the next steps may include:
- Full physical exam
- Pelvic Exam
- Transvaginal & Transrectal Ultrasound
- Hysteroscopic Exam
- Blood tests
- Urine tests
As mentioned previously, the surgical procedure of diagnostic laparoscopy is the only way to definitively confirm endometriosis.
However, endometriosis specialists are trained to recognize certain clinical signs and symptoms that are often highly suggestive of endometriosis.
For example, during a pelvic exam an endometriosis specialist knows to check certain areas where endometriosis commonly develops and which often are very painful to the touch (localized tenderness). Suspected endometriosis growths may also be palpable during a pelvic exam and may present as painful nodules or lesions that can easily be identified by a specialist, but which non-specialists may not know to look for.
After going through this initial diagnostic work-up, Dr. Camran Nezhat reports his findings and provides recommendations for suggested next steps, including an overview of various treatment options.
Suspected Endo? What Next?
We know it’s not always easy to immediately jump to the next stage of deciding which treatments might be right for you. In fact, it’s normal to need more time and information so that you can learn as much as possible about your diagnosis, as well as the various pros and cons of proposed treatment options before making any decisions. And so, do feel free to take as much time as you need and ask as many follow-up questions as you would like during your first visit to our Center, or feel free to schedule a follow-up in-person or phone appointment as well if that’s more convenient for you.
Although there is still no cure for endometriosis, there are treatment options that may help reduce symptoms considerably. Unlike a one-time bout with the flu, endometriosis often is a chronic condition and so it may be that more than one treatment and long-term follow-up may be necessary.
However, as Dr. Camran Nezhat’s patients will testify, living a pain-free life is possible.
Treatments can range from oral contraceptives (birth control pills) to surgical management.
More details would be provided during your initial in-person consultation. However, below are summaries of the most common treatment options that have proven effective in alleviating symptoms.
Treatment Option A: Oral Contraceptives (Birth Control Pills)
Many adolescent patients do experience relief from symptoms with oral contraceptives, otherwise known as birth control pills, or just “the pill.” One caveat to be aware of, however, is that hormone therapies like birth control pills do not cure endometriosis, nor can they prevent progression of the disease. However, these types of medical therapies may have a place as a first-line treatment option in young girls, particularly those who have milder symptoms.
If treatment with oral contraceptives is chosen, Dr. Nezhat would work carefully with you to listen to any concerns and would then outline an individualized course of management for your consideration. At our Center, we also take extra time to go over any risks associated with proposed treatments.
Concerning the known risks associated with birth control pills, in some cases this treatment may not be the right choice. For example, for those who smoke or who are otherwise at greater risk for stroke, birth control pills may be contraindicated.
In other cases, patients may experience too many uncomfortable side effects to continue with oral contraceptives. And so, it may take more than one try to find just the right therapy for each individual.
Other non-surgical options are also available, including prescription pain medication, though pain medications such as NSAIDs, acetaminophen, ibuprofen, and opioids also come with certain risks – some quite serious in fact – that should be reviewed before making a decision. Additional details about these and other alternatives to surgery can be found here.
As with any medical care, Dr. Nezhat would manage each patient’s on-going treatment carefully.
Minimally Invasive Surgery (videolaparoscopy)
Usually in medicine, doctors try to start with the least invasive form of treatment. However, with endometriosis, it’s recognized by most experts, including those at the NIH, that surgically removing all disease laparoscopically (videolaparoscopically) is the gold standard treatment.
And so, especially for those with severe symptoms and/or for those who poorly respond to medical and hormonal management like birth control pills, the next course of action is to consider surgery. Dr. Camran Nezhat is the world’s leader in the minimally invasive surgical treatment of endometriosis in women and girls. His many studies on the subject also demonstrate that pain scores and quality of life are improved considerably when complete and meticulous excision of all disease is performed.
Recurrence rates are also significantly reduced when endometriosis surgery is performed by an experienced and internationally recognized specialist like Dr. Nezhat.
Check out the following links with more details about endometriosis excision surgery and how Dr. Camran Nezhat can completely surgically excise endometriosis utilizing the minimally invasive laparoscopic techniques he was the first to pioneer.
Endometriosis Excision Surgery Myths and FAQS
Alternatives To Surgery
Endometriosis Surgery Myths
Fibroids Surgery Myths
Fibroids Surgery Options
Bowel Endometriosis Symptoms
Bladder Endometriosis Symptoms
Diaphragm Endometriosis Surgery
Thoracic Endometriosis Surgery
Infertility Surgery Treatment
Robotic Surgery Expert California
And, if you’re especially detail-oriented, you might also enjoy checking out the hundreds of books, articles, and other research Dr. Nezhat has published over the years, including his latest textbook on laparoscopic and robotic surgery, and other works including the following: