In the beginning, there was pain.
My periods began when I was 13-years-old, and I only remember them accompanied with pain. I bled heavily each month for six to eight days. As I got older, I would find myself passed out on my bedroom or bathroom floor from painful cramps. I would pass heavy blood clots, was often lightheaded, and regularly was prescribed iron supplements and over-the-counter medications like ibuprofen. When Alleve came on the market, I was thrilled to try a new pain reliever. They would dull, but never eradicate, the pain. My periods were always preceded with hefty bouts of PMS; I suffered from bloating, fatigue, headaches, skin rashes, and swelling in my knees and fingers.
When I'd report these symptoms to my doctor, he told me that periods can be like that. Some girls have problems, others don't. I just happened to be one of the girls who had a problem period. My mother told me the same thing, adding, "That's what my mother told me. It was like that for me and for other girls I knew growing up, too." As Carol Pearson discusses in her TEDTalk, as Zora Neale Hurston wrote in Their Eyes Were Watching God ("Black women are the mules of the world"), as Eve was told after she fed into her curiosity and took a bite of that forbidden fruit, I learned -- whether the lesson was intended to be learned this way or not -- that being a girl, becoming a woman, was painful. And I had to live with that pain. I had to learn to handle pain.
And so I did. I went with the flow.
What I didn't know was that I had endometriosis.Endometriosis is a disease that affects 10 percent of women globally. It knows no race, class, or socioeconomic status. Some doctors refer to endometriosis as a benign cancer. Padma Lakshmi, model and co-founder of the Endometriosis Foundation of America, describes the disease as "a web, like a vapor, like weeds in a garden that permeate everything, and stain everything. And metaphorically as well as clinically what you have to go and do, whether it is with laparoscopy or therapy or just understanding and support, is you have to go in there... and get rid of it. Not only getting rid of it in the womb, but getting rid of it in the heart and the mind."
During a woman's monthly menstruation process, the uterus sheds the endometrium (its lining). In women and girls who have endometriosis, some of these fluids remain in the body and stick to areas within and outside of the uterus. These implants eventually accumulate and develop adhesions, scarring and invasive nodules. It can end up everywhere. Endometriosis can cause symptoms that vary from painful periods, chronic pelvic pain, infertility, painful intercourse, rectal pain, gastrointestinal problems, and urinary pain or difficulty. Recent research has linked Endometriosis to other health problems in women, including autoimmune disease, allergies, and being prone to infection. Most women and girls suffer from symptoms related to endometriosis for a decade before they are accurately diagnosed.
During my annual check-ups with my gynecologist, I remained vocal about my painful periods. Every doctor, man or woman, suggested the same treatment: Advil, rest, exercise when possible. Not bad advice, but there was no urgency around finding out what was causing my problems. One doctor actually told me in college that, while I could have diagnostic tests done, they were invasive and it would be best for me not to pry too much into my uterus because I would want to have children one day. It was only after I got married and was unable to get pregnant during a year of intentionally trying to do so that a gynecologist ordered a battery of tests -- blood work, ultrasounds, pelvic exams, and additional exams with a fertility specialist.
When the blood work and ultrasounds yielded no answers, the specialist ordered a laparoscopy. This is a procedure where the doctor inserts a small scope through incisions in the pelvis and looks around the uterus and surrounding organs to see what is going on, and to make a more accurate diagnosis. My laparoscopy was supposed to take 30 minutes. Three hours later, the doctor went to the Waiting Room to update my spouse on her findings. I had Stage 5 endometriosis. (My doctor referred to it as "Stage 5" although "Stage 4" is the highest stage in the staging system established by the American Society of Reproductive Medicine.
Regardless of the stage, I had severe endometriosis. The scope revealed pervasive endometrial lesions throughout my uterus and on my ovaries. There was a lot of visible damage to my left fallopian tube. The doctor also found several fibroids -- one she described as the size of a large grapefruit. Given my occasional digestive issues, the doctor surmised that I probably also had lesions on organs or areas related to digestion. While she was conducting the laparoscopy, she decided to go ahead and repair as much damage as possible. She removed as much of the endometrial scarring as possible and removed the fibroids.
After the surgery, I was not pain-free. I was still symptomatic, but had calmer periods. I was simultaneously relieved that I knew what was going on with me all those years and angry that I hadn't been diagnosed earlier, before the disease progressed in severity. My doctor explained to me that the damage she saw was so severe that there was a 1 percent chance that I would ever have children naturally or with fertility treatments -- a percentage I, of course, heard as a pronouncement that I would "never" get pregnant. When I asked what my next steps were with regards to pain management and halting more endometriosis growth, I was given the sure-fire options of either long-term inducing menopause through drug therapy, or, she said apologetically, "Get pregnant."
Now, those moments seem a lifetime away. By all accounts, I am so fortunate. My endometriosis was severe, but, eventually, I had the children I was told I would never have, children my body did not seem capable of yielding. They are the breathing symbols of my healing. My fortune and story, though, do not end with my children. For years after my diagnosis, when I told people that I suffered from endometriosis, that it was difficult for me to have my children, their response was a warm "you are so blessed" or "at least you don't have issues now." Yes, I did come through endometriosis and defied the odds. The children came.
Too often, though, childbearing becomes the motivation for treating endometriosis. And while having children has been the most life-altering experience and process I have lived through, I have to say that the blessing that I walked out of those years of (finally) diagnosis and treatment with -- the blessing I think of only now with distance from the moment -- is that I learned the importance of listening to my body's messages. And the importance of fighting for those messages and clues to be heard by the doctors who are charged to aid me in a life of wellness. Beyond medical treatment, I learned about eastern medical approaches to Endometriosis treatment. Acupuncture and yoga taught me a new way of engaging my body's sensations. I worked on shifting my thinking away from dulling the pain with ibuprofen to thinking about what that pain might be telling me. I learned better self-care.
Recently, I was jettisoned back to my early days of diagnosis and treatment when I encountered the blog Yellow Paper Dress.
Through this blog, the author shares, among other aspects of her life, her experience with Endometriosis. Her reflections reminded me very much of my experience. Her photographs of her treatment and healing remind me that, for me, there are no photographs of that year, only images in memory, emerging now and then in reflection. Try as I might, there are no sounds for me, either, of that experience. I remember trying to keep a journal then, but words escaped my screen and page until now, 11 years later, as I write on a March day during Endometriosis Awareness Month.
This Endometriosis Awareness Month and beyond, share your stories. Read the stories of others. Become aware. For more information,click here and the other sites and sources referenced in this post.