Approximately 176 million women are affected by endometriosis all around the world. Endometriosis can appear in any population disregarding ethnical and social background. The majority of patients with endometriosis are under-or misdiagnosed, therefore they cannot receive proper treatment.
Endometriosis is a condition when the tissue lining in the uterus appears outside of the womb. Endometriotic tissues can be found anywhere in the body. The most frequently affected areas are: pelvis, internal female organs, bowels, urinary tract, especially the ureters and bladder. It is really important to note that the tissue which lining outside of the womb is NOT the same as endometrium. The endometrium-like tissue is more fibrotic and is histologically different from the endometrium.
The endometrium-like tissue, just as the endometrium, is growing by hormonal impact from menstrual cycle to cycle causing internal bleeding and fibrotic tissue changes. Endometriosis is a tissue and organ destroying disease. Invading the tissues, endometriosis does not respect the anatomic borders, it can appear anywhere, similarly to malignity. The ethology of endometriosis is currently unknown.
In the past few years the illness has been under media coverage, yet patients with endometriosis are still underdiagnosed. Those „lucky” who are diagnosed in time, need to face synthetic hormonal replacement therapy (HRT), which proves to be unsuccessful in more and more numbers. However, doctors are still reluctant to accept this. The disease can reappear or even progress with or without HRT, as the recurrence rate is extremely high, 50% within 5 years.
The majority of Obstetrics and gynaecology specialists, with few exceptions, consider the disease as just gynaecologic condition and sadly, the medicine has the same way of thinking that it manifest itself in daily practise. This inappropriate approach can lead to delayed diagnosis of pelvic and extra pelvic endometriosis. Since the extra pelvic manifestation of endometriosis has been recognised, it is considered rare. Those specialists who have seen the real face of endometriosis and treat patients with endometriosis daily, have started to consider the real aspects of rarity and rather apply a different identification called extra pelvic endometriosis (EPE). The tissue of the pelvic and internal female organs endometriosis are named pelvic endometriosis. The EPE indicates extra pelvic endometriotic lesions that are found in the gastrointestinal and/or urinary tract, in the respiratory system or in the skin as well as in the central and peripheral nerve system.
Several clinical studies have shown EPE as a medical condition is not rare, we can assume otherwise due to misdiagnosis. Diagnosing it as rare can lead to doctors not taking seriously patients’ complaints because they are unable to match them with the illness as they know it. This kind of approach can be harmful both the research and the patients’ point of view as well. These patients may not receive proper treatment. However, this is greatly harmful not only because of the faulty approach, but also because most of the clinical guidelines do not contain the right treatment way of EPE. These incomplete clinical guidelines lead to unnecessary surgeries or bronchoscopies. There might be a significant difference between the doctors’ ideas and patient experience, these two things may not meet each other.
Sadly, it is a common occurrence that patients with endometriosis are accused of having imaginary symptoms, therefore being misdiagnosed they are left out of the health system. Endometriosis can affect 1 woman out of 10. The occurrence of the disease is the following: 96% reproductive internal organs (uterus, ovaries, tubes), 49% urinary tract organs (bladder and ureters, kidneys), 55% gastrointestinal tract (small intestine and colon) 14% thoracic endometriosis. Due to these data, EPE is not rare, 1 patient out of 5 has EPE. Accepting endometriosis as a full-body, systemic illness is a cardinal question, because we are already aware of the fact that endometriosis is not just gynaecologic disease.
The multidisciplinary approach to the treatment of endometriosis never will be introduced and the real root cause will never be found until we are able to leave behind the old-fashioned views of endometriosis being just a gynaecologic condition treatable with HRTs. Because of these facts, there is a huge demand for education and awareness. As a physician, I consider the education of patients inevitable, but the education of physicians and medical staff is at least as important as the former.
Endometriosis can affect every aspect of life therefore the patient-oriented view can be the only proper solution. The delay of diagnosis, the improper laparoscopic technics, the lack of education and improvement lead to patients creating their own online support groups on social media and doing self-education, and in most cases, they can be more up-to-date than the primer health care providers.
These online support groups can play an important role in sharing experiences but may have a negative side as well. Patients and doctors are being separated from each other, thus creating a „hole” in the medical system, and this can lead to mistrust between patients and doctors.
Having been familiar with endometriosis both as a patient and a doctor for years, I have created MedicBees® and Endomedic® for several purposes. On the one hand I would like to share my personal and professional experiences and on the other hand I intend to promote the establishment of a new interdisciplinary approach. It would be highly important if patients and doctors could meet again and they could share information and knowledge in this new interdisciplinary view.
Krisztina Szakacs MD