I started having rectal bleeding when I was 12 years old. My first thought was, “I must be dying.” My second thought was, “Could this be my period?” At that tender age, the bleeding was scary and confusing. Looking back, I recognize that my rectal bleeding, and the pain I experienced with bowel movements, were probably my first symptoms of endometriosis.
Endometriosis is an inflammatory disease characterized by endometrial-like tissue outside the uterus. It can lead to chronic pain, fatigue, infertility, and more. Endometriosis affects at least
Like many others with this disease, it took me over a decade to get a diagnosis. This was despite the many doctors I met with over the years.
When I was 15 years old, I began menstruating. By the time I was 16, my stomach issues had gotten worse, especially around the time of my period. Bloating, diarrhea, and intense stomach pains came frequently.
By my freshman year in college, these symptoms intensified so much that I was finally referred to a gastroenterologist. I endured a colonoscopy, an upper gastrointestinal series, and a lower gastrointestinal series — all before my 19th birthday. My results were defined as unremarkable.
My urgent and painful bowel movements after eating, along with my vomiting, chronic fatigue, and worsening periods, were written off as irritable bowel syndrome, stress, and anxiety.
When I was 23, I passed out during a bout of intense right-sided lower abdominal pain. I went to that same gastroenterologist, who diagnosed me with borderline appendicitis. A general surgeon removed my appendix. Even though the surgeon looked directly inside my pelvic cavity during surgery, I was still without an endometriosis diagnosis.
“My symptoms were crippling, preventing me from working and doing basic things like grocery shopping. Taking care of my young daughter, who we fought so hard to have, became increasingly difficult.”
When I was 26 years old, I went to my gynecologist to talk about my pain during ovulation and my painful periods. I also let her know that my husband and I had been trying to get pregnant for the past year with no success. She dismissed my symptoms as just me having a low pain tolerance and told me that I was too young to experience infertility.
I finally insisted on a referral to a fertility specialist. They did many more tests, all deemed unremarkable. It was a diagnostic laparoscopy that finally revealed the truth and led to my endometriosis diagnosis.
After my 45-minute exploratory laparoscopy, my fertility specialist told me that I only had mild disease progression. He said that he was able to get all of it out. And he told me that I would now be able to get pregnant on my own.
While I was relieved to finally have an explanation for all the symptoms I had been experiencing all those years, I was left with more questions than answers.
Months went by after the surgery, and I was not able to get pregnant. I also didn’t get any pain relief from the surgery, and if anything, I felt worse. I was scared and felt that I did not have autonomy over my body or my future.
We went through a few failed rounds of fertility treatments, which were devastating and hard on my body. Luckily, I was eventually able to get pregnant with my daughter through intrauterine insemination. My daughter came 6 weeks early via cesarean section, and I felt like my body failed her. Despite a short stay in the NICU, she was healthy, and we were so grateful.
“Thanks to my endometriosis specialist and connecting with the greater endometriosis community, I learned about the importance of multidisciplinary care…”
We started trying for our next baby 6 months later. My doctor said that, due to my endometriosis diagnosis, it was our best chance.
The following 6 years were filled with failed fertility treatments and recurrent pregnancy losses as we desperately tried to give our daughter a sibling. All the while, my endometriosis symptoms were intensifying. My symptoms were crippling, preventing me from working and doing basic things like grocery shopping. Taking care of my young daughter, who we fought so hard to have, became increasingly difficult. The pain and bleeding made simple things, like pushing her stroller, bathing her, and even carrying her, more and more difficult.
My physical health felt like it was declining rapidly. My fertility specialist kept telling me one of the greatest endometriosis myths — I just had to get pregnant to feel better. This advice was devastating, as I had recently gone through three failed IVF treatments and multiple miscarriages.
The toll this took on my mental health was undeniable. I was losing hope — thinking I would have to deal with these symptoms for the rest of my life.
I decided to take my health into my own hands and started researching everything I could about endometriosis.
My research online led me to an endometriosis excision specialist. It was incredible to me that there were surgeons out there working solely with endometriosis patients. They didn’t spend the majority of their time delivering babies or treating infertility. They were a part of high volume centers of care. And they routinely excised disease from all impacted organs, not only reproductive organs.
They operated with experienced urologists, colorectal surgeons, and cardiothoracic surgeons, who all understood endometriosis and its impact on patients.
I decided to have a consultation and then another surgery. The endometriosis specialist went in and did an almost 4-hour surgery, meticulously excising disease from my bladder, bowels, and throughout my entire pelvis.
“I learned how mental health support is so crucial for a disease where patients like me are routinely dismissed and misdiagnosed for years…”
My endometriosis research also led me to a local support group for people with endometriosis. I didn’t even know these existed! I had never met anyone else with endometriosis.
Thanks to my endometriosis specialist and connecting with the greater endometriosis community, I learned about the importance of multidisciplinary care for this chronic disease with no cure.
I learned that the majority of providers are not endometriosis specialists — not even fertility specialists.
I had my gallbladder out a few months before my surgery with the endometriosis specialist. Just like the general surgeon who performed my appendectomy, the general surgeon who performed the gallbladder surgery did not see any endometriosis. This was the fourth surgeon, who, despite being inside my pelvis, either missed the disease entirely or failed to see the extent of it.
I learned how mental health support is so crucial for a disease where patients like me are routinely dismissed and misdiagnosed for years, where doctors perform incomplete surgeries, where specialized care is often inaccessible, and where jobs, relationships, fertility, and educational opportunities are lost — where the pain that patients face can be excruciating.
As a trained social worker, I was inspired to use my skills to try and spare other patients some of the same difficulties and traumas that I endured.
For the past decade, I have been working in the endometriosis, infertility, and pregnancy loss communities. I have been lucky enough to be mentored by advocates that have been working to break down barriers to care for years through organizations like the Endometriosis Research Center.
Recently, I was able to collaborate with EndoWhat on their Endometriosis National Action Plan, which was presented to members of Congress after the documentary Below The Belt premiered on Capital Hill.
I am inspired every day by the missions of organizations such as Endo Black, Sister Girl Foundation, and Endo Queer, which are serving those in the community who experience an even greater diagnostic delay. And who face more obstacles to care due to institutionalized racism and individual provider bias.
I have also had the privilege to provide individual mental health support and group support to patients in need. Endometriosis, infertility, and pregnancy loss left me feeling powerless for a long time. Working in this space as a patient advocate and mental health provider has helped me heal.
A few years ago, before my 40th birthday, I was also diagnosed with both adenomyosis and fibroids. The intense bleeding and pain that I was experiencing every month were traumatic and unsustainable. We were long done with family building, with our last failed fertility treatment almost a decade earlier. So, I made the deeply personal decision to have a hysterectomy to treat my adenomyosis. My endometriosis specialist at the Center for Endometriosis Care in Atlanta was also able to excise invasive endometriosis off of my bowels and other areas at the same time.
While it felt surreal to have a hysterectomy so young, I was happy and relieved to definitively close the chapter on menstruation and fertility after struggling for almost 30 years. There is no cure for endometriosis, but my access to specialists and multidisciplinary care has helped me maintain a decent quality of life.
Experiencing endometriosis, infertility, pregnancy loss, and adenomyosis has profoundly impacted my life and the lives of my loved ones. As it does for everyone suffering in these terrible ways.
But the courage, strength, and resilience of the people in these communities have inspired me and helped shape me into the person I am today. Throughout my life, doctors have often called my symptoms and my test results “unremarkable.” But in my opinion, living with these illnesses has led to quite a remarkable life.
Casey Berna is a licensed clinical social work associate that has been working in the endometriosis, infertility, and pregnancy loss communities for the past decade. Casey provides mental health support for those living in North Carolina and Florida, while also running free virtual endometriosis support and education groups open to anyone in the U.S. Casey is passionate about working with patient-led nonprofits and advocates to make expert endometriosis care more accessible. You can find more information about her work and favorite resources on her website: http://www.caseyberna.com/localsupport