Your period pain is not “normal”
Thank you for joining me on a journey to reclaim the inner brightness within each of us!
As my first Brightness Blog post, I want to share the raw, messy, and authentic emotions and thoughts from my experience of finally being diagnosed with endometriosis in January of 2018 after over a decade of pain, agonizing symptoms, dismissal, and confusion living with what I was told was “normal” period pain. For 13 months, I processed the events that led to my diagnosis. And then, one day, the words poured out of me and I shared them with the world.
I originally wrote this post and published it in Medium in hopes of helping people like me feel seen and validated in their similar experiences seeking a diagnosis. Back then, there were no research studies, articles, or resources on endometriosis (or really any health condition) that were inclusive of all gender identities. Chronic endocrine conditions, like endometriosis and PCOS, fell under the category of women’s health. As such, I used “female” and “women” in my writing without realizing that gender-diverse individuals were being unintentionally excluded. While these endocrine conditions do require that a person be born with a uterus, they are not exclusive to those identifying as “female” or “women” because gender identity extends beyond the hormones and organs you were born with. To positively progress research on health conditions, studies need to be inclusive of gender-diverse participants living with the conditions being examined. That is how positive social change occurs, one study at a time. This inclusivity matters to me and is why my Ph.D. dissertation study (Complementary Self-Care Therapies to Self-Manage Endometriosis in Association with Health-Related Quality of Life) included ANY participants born with a uterus who self-reported as having endometriosis.
For the purpose of sharing my original writing, I’m copying and pasting what I wrote back in 2019, unfiltered and unedited. By leading with vulnerability in sharing my heartfelt and raw emotions from back then, I hope to encourage you to honor your authentic story and allow others to see parts of you from the past.
We learn, we evolve, we grow. Here is my story written by my 28-year-old self.
“Stop dismissing the severe pain you experience. It is not normal. The pain you feel today may not be “just like the last time” you were crippled by this pain. Listen to the raging screams of the pain in your pelvic region and acknowledge what that pain is communicating to your brain. It is not a soft whisper saying “this too shall pass,” but a fierce groaning signaling that something is terribly wrong. The red flags wildly whipping in the pain receptors of your mind are not lies, but a profound, intuitive pulsing of the truth.
As strong females who fight monthly battles with Mother Nature wreaking havoc on our reproductive systems, we too often dismiss our pain and convince ourselves that to “make a fuss” over our pain would be dramatic and a show of weakness. Be brave and bold in owning your endometriosis. What you are feeling is REAL. Believe your premonition and seek medical care immediately.
For four agonizing months, I betrayed my body by dismissing the severe pain I was experiencing in my lower right pelvic region, convincing myself that the pain was simply caused by a nasty ovarian cyst. From previous experiences, I knew ovarian cysts warring in my abdomen would resolve on their own without the need for medical intervention. With the pain becoming too sharp to bear one month after the next, I risked showing “weakness” by calling my OB/GYN’s office to consult with an R.N. who had worked with me several times in the past. I explained what I was experiencing and told her I thought it was prudent to have an ultrasound ordered to investigate the source of my severe pain.
Instead of validating or taking my worry seriously, my R.N. made me feel foolish for having voiced my concern. After finally allowing myself to be vulnerable by admitting that the pain I was feeling was not normal, I was greeted by a lack of empathy and assured that my symptoms all pointed to a cyst that would resolve on its own. Basically I was told that I was “overreacting,” and once again, like so many other females throughout history, I felt disappointed and ashamed of myself for allowing pain to make me appear weak.
I rejected my gut feeling, believing that a medical professional could not possibly be wrong, feeding myself the lie that I was overreacting. But I wasn’t. A week after that phone call with my R.N., I ended up in the Emergency Room because the pain was the worst pain I have ever felt in my life. The excruciating sensations of being stabbed with a hot, jagged butcher’s knife left me in a fetal position, rocking side to side grasping at any tiny amount of relief when possible, sobbing and moaning in pain, unable to move or communicate in any other way.
After being admitted to the ER and enduring torturous hours of testing, the ultrasound results showed a loss of blood flow to my right ovary. The ER doctor was able to see that my right ovary was twisted with my fallopian tube, resulting in my ovary swelling to ten times its normal size. Emergency surgery was performed that day, as anything having to do with reproductive health being in jeopardy is flagged as an emergency in the medical world, and the original intent was to repair the ovarian torsion. But it was too late for my ovary to be saved.
For four months I dismissed my pain, which led to my right ovary dying. When my OB/GYN started the laparoscopic surgery that fateful day, he realized my ovary was necrotic and the damage could not be reversed. Due to the large size of my bloated ovary, my surgeon had to convert to open surgery to remove the dead ovary. What could have been prevented by seeking medical care several months earlier, or even one month earlier, morphed into a life-altering experience that left me scarred and with only one ovary remaining.
During that surgery, I was finally diagnosed with endometriosis. What a bittersweet tragedy mixed with victory. For ten years I had fought to gain a medical diagnosis for the constant pain I endured as a female, knowing full well that the root cause was almost certainly endometriosis. My surgeon gave me the diagnosis through that surgery upon finding endometriosis crawling all over my pelvic and abdominal regions like its own playground of lesions. After scraping and burning off the endometriosis attached to my uterus, bladder, left ovary, bowels, and rectum, he stitched together my bikini line leaving a three-inch reminder of the consequences of doubting myself.
That surgery was awful in that I lost an ovary; yet, it allowed me to officially be diagnosed with endometriosis and finally gain peace of mind knowing the cause of my pain.
Being diagnosed with endometriosis is ridiculously tedious, expensive, and practically impossible without enduring surgery to prove that endometriosis is plaguing your insides. Dealing with the depression and anxiety that settles over the mind due to a lack of understanding and resources for those struggling with undiagnosed endometriosis is a true problem for roughly one in ten women. The statistic is staggering.
For over a decade my doctors told me that I may have endometriosis, but there was no way to diagnose it, or be taken seriously by a doctor, without surgery. I am thankful that I finally know what the cause of my pain is. I am thankful to be able to share my story with females struggling to live with the chronic pain, to be taken seriously by their doctors, to be understood by those who have not experienced the symptoms of endometriosis, to find peace in having an official diagnosis and thus be able to form a plan for combating the endometriosis.
My desire for all women walking this exhausting path on the road to diagnosis is this: Take your pain seriously. Listen to what your pain is communicating to you. Be the voice for your gut instinct. Demand the ultrasounds. Insist on the tests. Put your health first even if it makes you feel “silly” for possibly “overreacting” because YOU are the only advocate for what your body is communicating to you.”
