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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. 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 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 was nine-years old. Endometriosis has a familial component to it, with studies showing that those with a family history of endometriosis are 5 times more likely to develop the disease themselves. As for 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), heavy or irregular menstruation, and having a first degree relative with endometriosis (such as a mother or sister).

Although rare, it’s 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

The most common symptoms of endometriosis in pre-teen and teenage girls are:

1) pelvic pain near or during menstruation
2) pelvic pain any time during the month
3) heavy periods
4) irregular periods
5) early onset of menstruation (pre-teen)
6) pain with bowel function
7) pain with bladder function
8) chronic gastrointestinal symptoms like vomiting, nausea, diarrhea, and constipation
9) back pain
10) pain with pelvic exams
11) pain with sitting
12) pain which radiates down the legs
13) pain which mimics appendicitis
14) pain which mimics colitis, Chrohn’s, or irritable bowel syndrome
15) pain which mimics celiac disease
16) 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 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 patients do not feel any symptoms, but disease is present and causing damage.  We know of this phenomenon only because a certain percentage of symptomatic adult endometriosis sufferers have reported that their systems were silent throughout their adolescence. 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 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 even the patient has missed.  

Like adult patients, adolescents 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. 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 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, and which exhibit predictable patterns of vascularization (i.e. angiogenesis). (It is hemosiderin that causes the spots to look black).  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 pain, Dr. Camran Nezhat believes it’s time to challenge the notion that there is such thing as “normal pain” or “normal period pain.”  Instead, Dr. Camran Nezhat believes that all pain should be evaluated, 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 – say at age 9-12 – may also experience difficulties in getting diagnosed and receiving the proper care. (http://www.theatlantic.com/health/archive/2016/06/the-long-term-risks-of-early-puberty/488834/) 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 care possible.

As you can see, there are definitely obstacles that often make diagnosing endometriosis difficult for non-specialists. However, it’s important to get a diagnosis as early as possible, since endometriosis is a progressive disease. To help reduce diagnostic delays, Dr. Camran Nezhat continues to advocate for early diagnosis and treatment.  He is trying to change society’s idea that pain with menstruation is normal.  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.

Diagnosing Endometriosis: What to Expect During Your First Visit
As mentioned, endometriosis is known to be a progressive disease. Therefore, Dr. Camran Nezhat advocates for its early diagnosis and treatment, 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’s can be a stressful experience. This is why Dr.Camran  Nezhat never rushes into any diagnostic work-up without first ensuring that patients know what to expect and are comfortable every step of the way. The first step that Dr. Nezhat takes during an initial consultation is to ask patients about their medical history and listen to any concerns they may have, including about the diagnostic process, treatment options, and long-term prognoses. After listening to the patient, the next steps can include both medical and physical exams, such as:

1) Medical history analysis
2) Full physical exam
3) Pelvic Exam
4) Transvaginal Ultrasound
5) Laparoscopic Surgery
6) Hysteroscopy (minor surgical procedure)
7) Blood tests
8) Sonohysterograms

Painful Pelvic Exams?
We do know that pelvic exams can be very painful for patients with endometriosis. This is why Dr. Camran Nezhat and our entire medical team works very closely with each patient so that we can provide individualized medical care based on the patient’s needs and concerns. to individualize her medical care based on her needs, including during her first visit to our Center.

Clinical Assessments
Though surgery is the only way to definitively confirm endometriosis, there are clinical signs that are often highly suggestive of endometriosis. For example, during a physical exam of the abdominal area, a doctor often finds that certain areas have very localized tenderness which can easily be palpated by a specialist.

After going through this initial diagnostic work-up, Dr. Camran Nezhat reports his findings and provide recommendations for next steps. As with all steps in the initial diagnostic phase, Dr. Nezhat takes as much time as the patient and/or her family needs to understand the nature of the clinical findings, as well as the various pros and cons of proposed treatment options.

Treatment Options
Although there is still no cure for endometriosis, there are treatment options that can help restore health and reduce symptoms considerably. Unlike a one-time bout with the flue, endometriosis is usually 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.

Treatment can range from oral contraceptives (birth control pills) to surgical management.  If endometriosis is suspected from the clinical findings, Dr. Camran Nezhat will provide an overview of various treatment options. After receiving an evaluation, we know it’s not always easy to immediately jump to the next stage of deciding which treatments might be right for you. So, please feel reassured that Dr. Camran Nezhat never tries to rush patients one way or the other during these important decision-making moments.
More details would be provided in an in-person consultation. However, below are a few 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. If this treatment option is chosen, Dr.Camran Nezhat would work carefully with the patient to listen to her concerns and then outline an individualized course of management for consideration. Please note that in some cases birth control pills are not advised or patients may simply experience too many uncomfortable side effects. For example, for women who smoke or are otherwise at greater risk for stroke, birth control pills may be contraindicated. It’s also important to know that hormone suppression therapies like birth control pills do not cure endometriosis, nor can they prevent progression of the disease.  However, it does have its place as a first-line treatment option in young girls, many of whom do experience relief from symptoms for many years with just oral contraceptives. Other non-surgical options are also available, including prescription pain medication. The pros and cons of each potential treatment option would be reviewed in detail during an in-person consultation. As with any ongoing medical care, Dr. Camran Nezhat would carefully manage each patient’s on-going treatment carefully. For additional details about the various non-surgical treatment options available, please refer to other publications of Dr Nezhat.

Surgery

For those with severe symptoms who do not or 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 surgically treating endometriosis in women including young 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 recognized specialist like Dr. Camran Nezhat. For additional details regarding surgery for endometriosis please refer to the publications of Dr. Camran Nezhat. You can find some of these references on his Bio.