A Talk With #MEinENDO

One of the great parts about the #BloGHer16 Expo was that it didn’t just consist of retail brands and service providers. There were booths dedicated to women’s health, one of the being #MEinEndo. Their goal is to provide women with the facts about endometriosis and bring the conversation about this disease. Endometriosis affects about 1 in 10 women of reproductive age, but often goes undiagnosed or misdiagnosed. At the #MeinEndo booth, I got the chance to conduct a short interview with an OB/GYN, Dr. Vahora, who specializes in treating endometriosis and a woman, Karen, living with endometriosis. Unfortunately, I didn’t realize I would get this opportunity so I was wasn’t equipped with my recorder and my phone’s picks up too much background noise, but I did take notes.

Let’s first discuss a little bit about what endometriosis is and then get into the short interview. As I stated above, endometriosis affects 1 in 10 women of reproductive age and is among the most common gynecological disorders.The disease occurs when tissue that is normally found in the uterus (endometrium) grows outside the uterus; these misplaced growths are called lesions.This misplaced tissue can grow on the ovaries, fallopian tubes and other areas around the pelvis; or rarely, tissue may spread beyond the pelvic region. Estrogen fuels the growth of lesions, which then bleed and break down, causing painful symptoms. However, symptoms vary from woman to woman. Dr. Vahora said that it is known as “the great imitator” and that is part of the reason it so often goes undiagnosed or misdiagnosed for so long. Unfortunately, there is no cure for endometriosis.

Speaking with the doctor and Karen, I had some basic questions about the diagnosis and treatment process. Many of my questions were influenced by my own battles with getting diagnosed with polycystic ovarian syndrome. I wanted to know if doctors just weren’t as aware of how prevalent this disease is and if this is why it takes so long for a diagnosis? The answer was mixed. Although endometriosis is common, it is not in the forefront of doctors minds when a patient is listing off their symptoms because those symptoms are often the same as other even more common diseases, or not recognized as gynecological. Take Karen for instance, her main symptom was frequency and urgency of needing to use the bathroom. When most doctors think of endometriosis, they think of debilitatingly painful and heavy periods. Because endometriosis can affect multiple organ systems delays in diagnosis can be up to 7-10 years.

Another question I had, mainly for Karen, was whether she found doctors to be dismissive of her concerns. In my own experience, I’ve found this to be commonplace. It seems like many doctors, in regards to women, have a stance that being in pain or discomfort is the status quo as a woman and further inquiry into the causes aren’t needed. Both Karen and the doctor shared these sentiments and expressed how important it is to advocate for yourself when in comes to your health. You know your body better than anyone else, and if you feel there is something wrong, don’t stop looking for answers.

In talking about the treatment options, the doctor stated that they ranged from medication to surgery. Although for some of the treatments can seem drastic the improvement in the quality of life for someone suffering from endometriosis is well worth it. Karen stated that not just her physical health had improved since treatment, but her mental health as well. She was no longer living with the anxiety of having her symptoms dictate what she could and couldn’t do. I think this was the most important take away from the interview for me. Although there is no cure for endometriosis, there is still hope to live a full and happy life with the right treatment.

#MeinEndo is an important campaign because there are so many women living with the seriously painful and live altering symptoms of endometriosis, but there is such little attention around it. With equipping both women and their healthcare providers with the right information, they are essentially giving women with undiagnosed or misdiagnosed endometriosis a new lease on life. For more information, you can visit their website www.MEinENDO.com and follow them on Twitter @AbbVie