Endometriosis: The College Edition
By: Bern Bingham
Hello. It is my pleasure to have been invited to speak with you on my experience with endometriosis. My name is Bern Bingham. I am a senior nursing student and am the founder of Knock Out Endo. Knock Out Endo is an entity whose mission is to raise awareness about this debilitating condition and to raise funds to care for the treatment of endometriosis,through excision surgery.
My story began approximately ten years ago. I had dealt with symptoms of endometriosis for years before I told anyone. As a young teenager, I suffered from migraine headaches, severe abdominal and pelvic pain, and cramping around my menstrual period. While I did speak to various gynecologists about these symptoms, none had ever mentioned the possibility of endometriosis as my diagnosis.
As I began my college career, my symptoms became more severe. However, I still did not understand what was wrong and thought this was ‘normal’ as I had been told numerous times before. Then, in June of 2012, while attending an event, with friends, I was suddenly unable to walk because I was in severe abdominal pain. In July, my life changed and I was surgically diagnosed with endometriosis. I had a diagnostic laparoscopy, in Winthrop Hospital, and when I awoke the doctor gave me my diagnosis. I had never heard of endometriosis. However, the doctor assured me I would be fine since the operation was successful and he had used ablation techniques to remove the endometriosis. I believed him.
I didn’t worry about my diagnosis, since the doctor told me everything was gone, until the pain returned roughly three months later. As I returned to school in September, I experienced more pain each day, which caused me to stop going out with friends, stop partying, stop drinking-stop everything that a ‘normal’ college student does. The only things I refused to let endo take from me were my education and my training in mixed martial arts. During training, my team was incredibly supportive-allowing me to take breaks and avoiding positions that increased my pain. I finished out the year on pain medications, lying in bed, going to specialists appointments, and not seeing anyone unless I had class. I lost all sense of the ‘college lifestyle’. My social life disappeared.
I had my first excision surgery, via Da Vinci Robot, that summer, and was diagnosed with more endometriosis-deep infiltrating and a severe stage IV case. The doctor was shocked that at my age, of 21 years old, I could be so sick and have so much disease inside me. Yet, I am still sick and still in need of more surgery-getting more frustrated each and everyday that I live in pain, struggling to find the care I need, knowing there is no cure.
I’m not telling you my story because I want you to have pity or feel bad for me. This disease goes far beyond me and what women need from supporters is support. Endometriosis is painful, depressing, and life changing. Patients suffer from a decrease in the quality of their life making it difficult to keep friends along the way. I lost everything EXCEPT my education due to this disease. I lost 90% of my friends. They told me that I “made excuses” not to see them or that I was “just pitying myself” when I couldn’t socialize with them.
I am here to beg you to be one of the 10%. The ones that stuck by me and realized the painful reality of my situation: the people who came to visit me, or helped me into bed in the dorm, or sat with me just to watch a movie in bed instead of going out that night. When I think back on nights like those, I don’t mind that I missed the college experience that endometriosis stole from me. I have my OWN college experience, knowing what it is to want something so badly that you can’t give up even through sickness. I learned who was truly there for me when I needed them.
I cannot stress enough how much I miss the friends that left me because of endometriosis, but I value the friends that have stuck by my side that much more. Friends that will visit, call, text me, and drive me to doctor’s appointments just to sit in the waiting room and give me a hug when I need one. These are the friends whom I treasure.
Please don’t let your friend feel alone in this disease. SHE is struggling to stay awake to read her books, SHE can’t drink because it makes her symptoms worse the next day (hangover symptoms x 20) SHE is on pain medications and can’t keep her eyes open to talk in the middle of the night. Believe me, we would LOVE to be able to go out with friends every week, or eat junk food with you all the time. The truth is […] that 1 night of going out can take up to 3 days to recover. So on the days that she DOES go out she makes sure to enjoy time with friends that care about her [---]Sometimes even masking her pain to them.
I have to say one of the saddest aspects of this disease to me is the lack of support that is out there for the over 170 million women that suffer from this disease even though endometriosis was first introduced to the medical community over 100 years ago. Endometriosis is a disease where the internal pain the patients feel is not seen externally by family, friends, significant others, or medical professionals. There are many cases where endometriosis does not even show up on testing until surgery is performed-the only accurate way to diagnose a patient.
While women and their supporters need to be educated, so do medical professionals. It is important that patients have faith they will be treated appropriately and cared for--not only by those in the medical profession-doctors, nurses, and social workers--but also understood and supported by loved ones. Endometriosis has flown under the radar for far too long. A person in pain should never be ignored -they need to be cared for and helped. There are few doctors, in comparison to other specialties, who have the ability to skillfully and compassionately take care of and treat women with endometriosis. If you are considering the medical field-PA, nursing, or medical school-please take the time to know about this disease and how to care for these patients with love and kindness.