Ending Up WIth Endometriosis
“[Having Endometriosis] is like fighting an invisible battle.” Kym, a twenty six year old woman with Endometriosis, explained to me as her well behaved son sat on her lap with a bashful smile. “I think what people need to understand,” Cambria (25) began, “Is that being in extreme pain on your period is not normal. Although people might want to tell you that.” It seems like if you end up with Endometriosis you are in for a battle that could last years, and in some instances for your whole life. In many cases, the average time it takes to receive a formal, medical diagnosis is seven to ten years. However, for the women I interviewed, it took longer than average. So, many years could pass while experiencing extreme pain without any idea why.
“I first realized the pain I was experiencing was not normal when I first got my period. I would vomit because of the pain and miss school– sometimes for three to four days.” There can be many ways Endometriosis can manifest in the body, but a few symptoms were shared between the two women I interviewed. Pelvic pain that disrupts the normal course of your life is the primary symptom of Endometriosis. Cambria relayed that the pain associated with Endometriosis, “Can feel like pressure, or a sharp pain. It’s really a variety of pain at different times in my [menstrual] cycle. Sometimes it would be painful to use the bathroom. Now I know it was because they found endometrial tissue on my bowels and bladder.” Kym explained that,“[She] was able to feel it when [she] ovulated because the endometrial tissue was in [her] fallopian tubes.” So, the type of pain and where the pain developed can vary, but because of the general pelvic pain experienced many women do not get taken seriously when they bring up their pain to their trusted medical professionals.
As it was told to me, when people seek help for the symptoms of Endometriosis they are told that pelvic pain is normal on your period, even extreme pain. Another very common instance that occurs when seeking medical help for any issues involving uterine pain is being prescribed birth control. “That did absolutely nothing for me. It was almost comical, because I was so young.” Recently, while in conversation with the team at Ruth we began to understand how the first response for many doctors when a patient is experiencing uterine pain, or any irregularity in their menstrual cycle, is to be put on birth control. In a way, this makes sense. Kym told me that a friend of hers who was in medical school was only given a one day lecture on women's reproductive systems. So, there is obviously a need for more serious research and knowledge in the medical field, outside of specialists like gynecologists and obstetricians.
Diagnosis can also be elusive because endometrial cells cannot be detected by noninvasive means. The only way to receive a concrete diagnosis, and treatment, is surgery. After experiencing neglect from medical professionals, both women interviewed said that their diagnosis was bittersweet. On one hand, they felt relieved that their pain now had a name. On the other hand it was frustrating and infuriating to realize that their pain had been so easily brushed off. Cambria said that, “I still have anxiety about going to the doctor. I just don’t like to go.” She also expressed just how many times she had to go to the doctor before getting any substantial treatment. “My mother became so frustrated with the doctors because she knew that there was something wrong. Something was obviously wrong. Then when I got older I had to go alone, at the same time, my symptoms were becoming worse.”
One way to alleviate some of the mental stress brought upon when trying to come by a diagnosis is to seek out alternative medicine. Kym and Cambria found relief in alternative methods. Cambria found that, “Acupuncture has been super helpful. But, you know, it’s not a one and done treatment. I go back every month. Other than surgery it has been the most helpful for me.” Kym swore by engaging with a Naturopath saying, “I saw a Naturopath and began to take supplements. I want people to know that my NEC supplement has worked wonders for me. Also making dietary changes has helped as well.” The biggest take away I got from engaging with women with Endometriosis is that we should keep pushing for referrals, surgery, and for other methods that you personally think will help improve your wellbeing. Although, this can be a harrowing endeavor as our society has conditioned us to take doctors' words as fact. However, when you know there is something wrong in your body we must find the courage to be persistent.
In many cases, Endometriosis is not just a few days of painful cramping. It is a chronic health condition that is affected by hormonal cycles, but can express itself even when you are not on your period. Cambria ended our conversation with a statement that really resonated with me. She said, “Don’t just accept the first piece of advice from your practitioner you receive, get a second opinion. See a specialist, and trust your gut.” I think, in our society at large, people with uteruses are encouraged to not trust our intuition, as we are assumed to be overreacting. But to really trust our guts can be powerful and essential when we must be our own advocates.