My story in Endometriosis
During my 25 years of medical practice, I have treated more than 5,000 patients with Endometriosis, a very complex disease that destroys the functional life of women.
It was my training in the 1990’s with one of the pioneers of Endometriosis in the USA: Dr. Robert Franklin (Baylor College of Medicine, Houston, Texas) who taught me the proper management and surgical techniques to treat Endometriosis in a deep and complex form of the disease, which was obtained from years of experience with a focus and understanding in the treatment of the disease in the pain, fertility and quality of life of the patient.
When I started treating Endometriosis in my country Venezuela, many people, including doctors, told me that they did not know the disease and had never heard of it. The word “Endometriosis” was gradually gaining strength but there are still doctors who fail to treat the disease adequately.
There is a lot of confusion and misperception of Endometriosis in the medical community. Most doctors find themselves unable to diagnose and treat it. Patients often do not know where to go or what to do for proper treatment and this results in long agony with a prolonged period of pain.
It is very important to reach out to each woman and her treating physician to inform them of the proper management of this disease which for many is an enigmatic and mysterious pathology.
“Any woman who has or suspects she has Endometriosis should be treated by a specialist in the disease, this is the key to success in the treatment and prognosis of the patient, otherwise errors in therapies or inappropriate surgeries are costly in the reproductive, functional and emotional future of the patient”.
I am convinced that Endometriosis should be a subspecialty in gynecology and obstetrics.
Unfortunately this is not the case and the training in the disease is very basic and inadequate. Therefore, as there is still no official specialty in Endometriosis, it is very important that the patient knows how to identify the disease and the doctor who can provide the best care and service for this disease.
It is very frequent that these patients end up with the wrong doctors, with wrong diagnoses and bad treatments, and I can write a book about that with many stories that arrive daily to my desk.
Endometriosis is a multifactorial disease of immunological origin that affects many systems and must be treated in many ways and in teams that involve: Gastroenterologists, Urologists, Surgeons, Immunologists, Psychiatrists and Pain Medicine.
It is very important that the Endometriosis specialist has a multidisciplinary team with a general knowledge of the disease, as we have at Centro Medico Dr. Karame.
In our team we also provide psychological and nutritional support in the management of these patients. It is vital for the patient that the lead physician has the coordination of all these specialties for the understanding of the disease in a multidisciplinary way.
“The physician in Endometriosis Surgery must be meticulous and precise in removing the lesions, have the proper training and a lot of experience to make the right decisions. This is achieved with years of practice in Reproductive and Laparoscopic Surgery. After surgery the physician must evaluate the patient and look at the symptoms that still persist and work on the different non-surgical areas to restore both symptomatic and reproductive health”.
One of my great accomplishments in this disease is to listen to the patient and understand their suffering in Endometriosis. Most of them are frustrated from visiting several doctors before and not understanding their problem, they know they have something but have not yet found the problem, until they come to my office, they are told what they have, they are understood and guided to diagnosis and treatment.
The moment she feels identified with the person who is going to solve her problem, her life changes, both for her and for her partner. In this disease the doctor-patient relationship is very important, which in medical terms is called “Rapport”. The disease is explained very well, she and her partner are given adequate information, documentation to read as well as informative links on the Internet. It is treated in a very individualized and unique way.
At the moment the honesty of the medical community in identifying and referring the patient with Endometriosis to the right specialist is a big problem. I hope that physicians understand that these patients suffer greatly and that the right decision changes their overall prognosis.
“If the surgeon does not know Endometriosis as a disease, he will not know how to look for it, nor see it and even less know the lesions in all their stages, from the earliest and most difficult to diagnose lesions to the most typical and advanced. These scenarios are very common where the surgeon comments: “I checked and did not get anything” or “I found and did not do anything, leave everything the same” or even worse, “I removed everything that did not look good” (Mutilating the patient). This completely deviates the diagnosis and treatment, giving false prognosis and false hope in these patients”.
Any patient who has clinical and touch data suggestive of Endometriosis should be reviewed by a specialist in the disease with excellent training Laparoscopic and Reproductive (Reproductive Surgeon) this is what makes the great and unique difference.
Patients come to my office everyday for pain or infertility, they are diagnosed with Endometriosis and they tell me: I have seen several doctors before, I was operated and they never diagnosed me nor told me about Endometriosis, but I am still the same or worse with the same problem. Once diagnosed and properly treated the prognosis for pain, quality of life and fertility improves by a high percentage. These patients are generally happy with themselves, their partner, family and work environment.