By: Bernadette Bingham
There are 176 million women and girls estimated to suffer from endometriosis (source: World Endometriosis Research Foundation, http://endometriosisfoundation.org/about/endometriosis). Endometriosis is a condition wherein tissue resembling (but not identical to) the lining of the uterus (endometrium) is found elsewhere in the body (source: Center for Endometriosis Care, http://www.centerforendo.com). While it may be asymptomatic for some, many women and girls experience a combination of symptoms that include pain, fatigue, depression, migraines and a decreased quality of life. The most effective treatment for endometriosis is surgical excision of the disease through minimally invasive surgery called laparoscopy. There is no absolute cure for endometriosis, but those who undergo surgical excision have an excellent chance of long-term relief. Some patients may still have symptoms, however, and decide on additional therapies ranging from hormone therapy to alternative measures to try and manage any ongoing symptomology.
Many women with endometriosis may experience symptoms for upwards of five-ten years before they receive an accurate diagnosis, and are then subjected to multiple ineffective surgeries and treatments. While there are many OBGYN’s who can try to manage symptoms of the disease through medication or superficial surgery, there are very few ‘endometriosis specialists’ – practitioners with dedicated centers solely focused on advanced treatment of the disease - to help care for the large community that suffers.
Healthcare providers often do not completely understand endometriosis and the struggles that accompany the disease. According to one early study group (source: Focus group study of endometriosis: struggle, loss and the medical merry-go-round. Cox H, Henderson L, Andersen N, Cagliarini G, Ski C. Int J Nurs Pract. 2003 Feb;9(1):2-9.), many women feel the need to “doctor shop” until they find one that understands the treatment that they seek. It is incredibly hard to find a clinician that knows the symptoms and decreased quality of life brought about by endometriosis.
Emergency room visits are common for some women with endometriosis due to lack of insurance or pain management. Patients may be labeled as “drug-seekers” or referred to as “dramatic” by some within the healthcare profession. It is important to raise awareness about endometriosis and to educate providers on the disease. In addition, many women have been told that “pregnancy cures endometriosis” (Cox et. al.), which it does not. While that is the thought of some general practitioners and OBGYN’s, it is not true and may leave women feeling hopeless or helpless. Poor attitudes such as this are reasons that women do not seek medical care for their endometriosis.
As a stage IV endometriosis patient, I too have experienced poor attitudes and lack of education throughout various healthcare facilities. Endometriosis may impose a lot of lifestyle changes. Some of these changes may not be realized by medical staff when we approach them regarding help for the disease. It is my belief that if we begin to let medical staff into our daily lives, they will gain a better understanding of endometriosis. Many women feel misunderstood or that they are not believed by medical teams.
I am asking women with endometriosis that feel their providers do not understand their quality of life with endometriosis to write a simple narrative about their experience with the illness. While the medical field still needs to be educated on endometriosis, a patient must be their own advocate. Patients must learn to speak up and be sure that they are understood. I am hoping through the use of a short narrative the patient will be better understood and educate others at the same time. I think the narratives will also help to gain awareness for endometriosis.
The narratives should include their daily life and what symptoms they experience most often (general activities, pain scales, limitations from endometriosis). After explaining their regular life with endometriosis, the patient would write a short paragraph of how they feel when they are having a flare up or are at their worst state with endometriosis. In this way, emergency room staff that is not specialized in endometriosis can learn about the disease through the patient. A narrative also opens doors to start conversations—the provider may not read the narrative, but the patient can refer back to it during their appointments with doctors or during flare-ups.
I am hoping that through these efforts, we, as patients, can become better advocates for ourselves and raise awareness through the education of those that do not truly understand us. By reaching this higher level of understanding, I am hoping women with endometriosis will not be labeled as “drug-seekers” or “dramatic”, as this is extremely offensive to patients. More importantly, by using a narrative, patients can ensure that they will not forget to tell the doctor or staff about a specific symptom or limitation created by endometriosis.
If you would like to write a narrative, feel free to try it out! Also, please email me if you have any questions firstname.lastname@example.org, or message me through the page on facebook (facebook.com/knockoutendo). I will be happy to help and answer questions in any way that I can! I also have a few tips and questions to keep in mind while writing a narrative which can be posted as well.