This article is sponsored by The Center for Innovative GYN Care
March Is Endometriosis Awareness Month, Worldwide EndoMarch
For the millions of women, and especially young teenage women, who suffer each month with moderate to severe pelvic pain associated with their menstrual cycle, the vast majority have been told that it is normal. They have been told this by their doctors, their relatives, their teachers, and the media. Products to alleviate period-related cramping, pain, and headaches all underscore the inevitability of suffering.
The perception is that this is a burden a woman must bear as part of her biological make-up, and the less said about it the better, unless you are selling a pain reliever/diuretic combo. Those who manage to make it through years without experiencing pain are deemed “lucky.” But, the mere acceptance of pain as a side effect of the onset of female fertility has served, some would say for thousands of years, to ignore a sign of an actual disease: Endometriosis. A disease that increases in intensity over time.
The body responds to inflammation with a pain response. Diminishing that experience of pain and making it a taboo subject has created too many dismissive attitudes towards women who suffer from breath-stopping, mind-numbing pain. The amount of damage endometriosis can cause cannot be summed up in days lost at school or work (or subsequent job loss), relationships strained (or ended), or children never born. Every woman who has been diagnosed with endometriosis has her own story to tell.
“At the first sign of pelvic pain, it’s important for women to see a specialist who can determine if it is endometriosis,” said Dr. Paul MacKoul, MD. “If patients can be diagnosed earlier, before the condition has time to ravage the organs in the pelvis, minimally invasive surgery to remove the lesions can be more effective in preventing long-term damage.”
Endometriosis can only be confirmed through a laparoscopic procedure that looks inside the pelvic cavity. Due to lack of proper in-depth training on endometriosis in medical school, even doctors who are trained in obstetrics and gynecology miss the signs. Many women have to wait nearly a decade after the first sign of symptoms for a diagnosis, and the damage that can occur during that time often leads to the same doctors who did not recognize the early signs to recommend a hysterectomy as a treatment, but that is neither a practical nor an effective solution.
Hysterectomy is not a cure for endometriosis. There is no cure.
Hysterectomy is also not a solution for young women who at some point may desire to have children.
Endometriosis excision is the most effective procedure, and the current gold standard among endometriosis experts. Excision, also known as resection, is a procedure that removes endometriosis lesions. The lesions can be very deep, or very large. They can also be small and hard to find unless viewed by a minimally invasive endometriosis expert. They can appear anywhere in the body: on the organs in the pelvis, nerves, on the uterus, and even on the lungs. These lesions can cause painful scarring when ignored for years.
Endometriosis specialists are better equipped to diagnose and thoroughly remove endometriosis. Until medical training improves, OB/GYNs or general practitioners will continue to recommend band-aid hysterectomies as a treatment for endometriosis, both eliminating fertility, and making many women require additional surgery to remove remaining lesions.
“Unless all instances of endometriosis are removed, women with the disease will still experience pain” said Dr. MacKoul. “We often see women who have had surgery performed incorrectly, which can leave endometriosis behind or create scarring. These procedures can cause more pain than the disease itself. This is why we encourage women to always find a specialist for complex GYN conditions.”
As celebrities like Padma Lakshmi, Sheryl Crow, Lena Dunham, and Halsey are bringing endometriosis to the forefront, it is important for women, and especially young women, to get the facts about this disease so that they can make the most informed decisions about who to go to, and what to ask.
Early Endometriosis Diagnosis
The earlier a woman is diagnosed with endometriosis, the better her chances are of getting it treated with excision before it spreads to prevent irreversible damage. Many women with the disease experienced symptoms around their first period.
“…Many have been too ashamed to speak up about their condition or are discouraged from seeking medical care” said Camran Nezhat, M.D. “The end result is that women and girls suffer for years with excruciating pain and preventable organ damage before receiving the proper medical care that they need. By the time patients do receive medical attention, it’s often too late; organs and fertility and lives have already been severely damaged. What’s particularly disheartening is that teenage and pre-teen girls as young as 7-9 years old continue to be misdiagnosed almost as a matter of routine, making this an especially heartbreaking epidemic.”
March is Endometriosis Awareness Month
Worldwide EndoMarch launched in March 2014. Dr. Nezhat, the founder, established the organization to help eliminate the stigma that surrounds endometriosis.
The goals at the launch were to work with government-funded health organizations to increase the amount of funds spent on research, and bring the organizations that focus on research for endometriosis, fibroids and chronic pelvic pain into the public eye; increase education in public schools and arrange screenings; improvements to medical training in medical and nursing educational institutions; and, public education through increased media attention.
The EndoMarch brings together thousands of women, girls and their supporters around the world to raise awareness about endometriosis. On March 19, 2016, EndoMarch will take place in over 50 countries. The Washington, D.C. march begins at 1PM at Capitol Hill Presbyterian Church, 201 4th St. SE.
The Center for Innovative GYN Care (CIGC), based in the DC area, is an active advocate for women suffering with GYN conditions. Their minimally invasive surgical specialists have seen firsthand the pain and anxiety women with endometriosis from around the world face before getting a proper diagnosis, evaluation and treatment.
“We have seen what delaying endometriosis excision can do to a woman,” said Dr. Natalya Danilyants, MD. “The longer a woman suffers with endometriosis, the likelihood of extensive damage to her reproductive organs increases, and we want to provide information and tools for women to get an earlier diagnosis so that treatment can begin right away. If surgery is not performed by an expert, additional damage can occur if lesions are missed, or not fully resected, and if endometriosis is extensive, scarring from the surgery itself can occur within the pelvis.”
Until there is a cure, it is essential that advocacy and research efforts like those mentioned above are expanded. CIGC works closely with endometriosis awareness organizations to ensure that women have access to support, and have the most up-to-date information about the best minimally invasive endometriosis removal options to manage pain, bleeding and infertility. They partner with organizations to help end the stigma associated with many women’s health issues to ensure an open dialogue in the community and in the media.
CIGC will be supporting WorldWide EndoMarch, and setting up appointments for women who want to find a minimally invasive endometriosis expert for endometriosis excision, removal of pelvic adhesions that can form from the disease, and talk about pain management.
The 2016 Worldwide EndoMarch on March 19th, begins at 1PM, with events all day and the march beginning around 5:00PM. To learn more about how to get involved, visit https://endomarch.wordpress.com/dc-endomarch.