Raising Awareness: A Q&A on Endometriosis
March is Endometriosis Awareness Month and we sat down with one of our amazing members, Jillian Beucler, to talk about the chronic illness that affects 1 in 10 women. Endometriosis is a chronic condition where tissue similar to the lining of the uterus (endometrium) grows outside the uterine cavity. It is known to be one of the top 20 - while some sources say top 10 - most painful conditions you can experience.
BIAS: When did you first start experiencing symptoms that you now recognize as being related to endometriosis?
JILLIAN: I first started experiencing symptoms in college. I noticed my cyclic symptoms were more severe than my roommates and had a much greater impact on my day to day life. I experienced migraines and hormonal imbalances that I attributed to my birth control and lifestyle at the time - little sleep, a less than ideal diet and a lot of partying. I was told that pain during menstruation was normal, so I mostly ignored it, but over time the pain started occurring outside of my cycle and seeping into other parts of my life. I raised my concerns with several doctors but was often dismissed. It made me question if what I was experiencing was actually as terrible as it felt.
Jillian finishing the New York City Marathon in 2024 (her 3rd!!!!) marathon.
BIAS: Can you describe your experience with getting a diagnosis? How long did it take?
JILLIAN: I received a diagnosis last year. I spent 10 years going from one doctor to the next looking for help. It wasn’t until I turned 30 that my “period pain” became pain that I experienced on a daily basis. I started to feel a pulling sensation in my lower abdomen when lying down and developed a constant dull ache that kept me up at night... I knew something was very wrong. I spent hours doing research and came to the conclusion that I may have endometriosis. I made an appointment with an OBGYN that specializes in women’s reproductive health and presented my research. She immediately ordered an MRI. The results came back and the imaging lit up - it was everywhere. My doctor diagnosed me with Deep Infiltrating Endometriosis (DIE), and stated that I needed surgery. They suspected the endometriosis had fused my pelvic organs to my bowel. They needed to remove it and put each involved organ back in place to prevent further damage. The hardest pill to swallow was that despite surgical intervention, there is no cure for endometriosis. DIE has a high reoccurrence rate, and it’s possible that I may need several surgeries throughout my life to manage this disease.
BIAS: How has endometriosis impacted your daily life? Work? Relationships?
JILLIAN: The hardest part of living with endometriosis is the unpredictability. I can feel perfectly fine and be going about my day to be absolutely leveled by pain out of no where. It can be difficult to live life like that. There have been many sick days, cancelled plans and times where I may be present, but my mind is elsewhere - thinking about how I can control my pain in that given moment and appear “fine” when I feel far from it. Surgery has brought me a lot of relief which I’m so incredibly grateful for. It’s restored normalcy in my life, but I can’t help but worry that it may come back.
BIAS: What does a flare up feel like for you and how do you manage them?
JILLIAN: Everyone experiences endometriosis differently, but for me flare ups are full body. It usually starts as deep muscle pain in my abdomen and lower back, then triggers nausea, dizziness, vomiting, migraines and even sciatica pain. That usually evolves into severe cramping, to the extent that I can feel my uterus contracting. This makes it incredibly painful to stand upright, walk or even sit on the couch. Endometriosis is an inflammatory condition, so it has a wide reaching impact on the body. The only solution I’ve found is pain management prescriptions and sleep. I have to shut it all down during a flare up which can be very isolating. However, I know it’s what I need to do to take care of my body, so I let myself disconnect and heal.
BIAS: If you could make everyone understand endometriosis, what would you say?
JILLIAN: Endometriosis is a misunderstood disease. It’s not just a bad period - it’s chronic pain, relentless fatigue and inflammation that affects everything from fertility to digestion and mental clarity. It has been found on every major organ in the body, including the lungs, eyes and brain. Endometriosis is under-researched and has limited funding due to historical gender biases in medical research and advocacy. This is despite the fact that it’s as common as diabetes and heart disease! The lack of awareness leads to significant delays in diagnoses and more women living in pain every day. In addition to the physical symptoms, it can be emotionally taxing and lonely at times. I have spent many days masking my struggles with this illness because explaining it feels impossible. If you know someone living with endometriosis, just know that they are trying their best.
BIAS: What advice would you give to someone who suspects they might have endometriosis?
JILLIAN: You are your biggest advocate. Equip yourself with knowledge, track your symptoms, don’t be afraid to ask more of your doctors and get a second, third or fourth opinion. The medical system is not always kind to those with chronic illnesses and often minimizes women’s pain. Navigating this system and searching for answers can be draining and make you question yourself. Please know that YOU are worth fighting for, you deserve excellent patient care and a pain free life. You’re not asking for too much, and I believe you. 💛