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Pediatric endometriosis

Pediatric endometriosis

Endometriosis is classified as a disease of reproductive age. In reality endometriosis affects a much wider category, being either undiagnosed or misdiagnosed. One of the origin theories of endometriosis demonstrates that endometriosis is caused by a genetic defect that we are born with and over time, when women reach puberty, under the influence of estrogen, it activates and starts to cause pain. In most cases, different kind of pain appears with or after the first period. However, there are also cases when pelvic pain occurs before menstruation. It would be correct to say that it is not known exactly when the symptoms of endometriosis start, because the symptoms are ignored.

Endometriosis in teenagers

Not much is known about premenstrual endometriosis; although it has been reported in a few cases, the incidence could be higher if it were included in the list of diagnoses in this age category. Adolescents and girls represent sensitive categories and are often ignored when they complain of pain in the pelvic area. An endometriosis center in Berlin diagnosed a 9-year-old girl with endometriosis who complained of chronic pelvic pain since the age of 8. The adolescent will also complain of pain during menstruation and ovulation, feeling sick, fatigue, back pain, headache, vomiting, intestinal and urinary transit disturbances, and if the teenager is sexually active, depending on the type of disease, she may complain of pain during intercourse.

Adolescents are being told, when they complain of menstrual pain, that it’s normal, and thus the diagnosis is delayed. Moreover, some are led to believe that they have a weak character, that they complain of pain that is normal, and that they must deal with pain as other people do. As a result, the teenager will stop saying that she is in pain and will lose hope that she will have a pain-free life. 

How endometriosis changes and defines the lives of teenagers

Pelvic pain can start a week or even more before menstruation and can be a burning, sharp pain, can become acute during menstruation, and can be accompanied by uterine cramps, nausea, and vomiting.

The impact of endometriosis on teenage girls is severe. Endometriosis can affect their education, daily activities, relationships, and self-confidence. Many parents don’t know when to ask for a specialist’s advice, they don’t know if the pain is normal menstrual cramps or even real. Also, the parents don’t know who to turn to, the pediatrician or the gynecologist.

As time passes and the adolescent grows up, she will also exhibit other symptoms that will be diagnosed as urinary infections, and sexual or gastrointestinal problems, although the tests performed will not show such problems. As a result, the teenager is either prescribed certain treatments or is told that she has nothing and that she is exaggerating: “all women experience pain during menstruation, so it’s normal”. After each visit to the doctor, the teenager will choose different treatments, she may even be operated on in the end, by a doctor who either has no experience in endometriosis surgery and as a result will conclude that nothing was found, or consider ablation to be a good treatment method or even remove the disease only partially and recommend hormone therapy to treat the remaining disease. Over time, the disease progresses, hormonal therapy may or may not reduce the symptoms, and in the end, the patient will suffer from a severe form of the disease and will require multiple surgeries.

Endometriosis pain is real, no matter the age!

Parents, teachers, and friends must believe the teenager when she complains of pain. Up to 73% of adolescent girls with pelvic pain who do not respond to medical therapy have surgically diagnosed endometriosis (Laufer). The gynecological consultation and examination must be done carefully, patiently, gently, and with great attention, especially if the teenager is having her first gynecological examination. The doctor must also know which are the areas most affected by endometriosis and that endometriosis is not always visible on imaging. Despite the lack of clinical signs, endometriosis should be considered as a possible diagnosis and the physician should explain this to the parents and the patient. The physician must also explain to the parents the treatment plan and what to do if the pain persists. Although the recurrence rate in teenage girls is higher than in adult women, excision is also the surgical treatment of choice for teenage girls. To be successful, however, the surgery must be performed by a surgeon who is familiar with all the forms of endometriosis and the fact that endometriosis can also be ‘colorless’ (endometriosis lesions are discrete macroscopically/surgically and can easily go undiagnosed). Some symptoms may persist after excision, in which case other pathologies such as adenomyosis must be considered.