As March draws to a close, we mark the end of Endometriosis Awareness Month by sharing a personal story that reflects the lived reality behind this disease: delayed recognition, the complexity of symptoms, the emotional toll of not being believed, and the long path toward healing.
At SENSOPAD, we believe that patient voices are essential. Stories like this remind us that endometriosis is not only a medical condition, but also a deeply life-altering experience that can affect health, work, relationships, identity, and trust in care systems. By listening to and learning from these experiences, we can help build more responsive, compassionate, and holistic approaches to women’s health.
Below, one patient shares her journey in her own words.
Q: When did your symptoms first begin?
A: Ever since I got my first period at 13 or 14, I had symptoms that were dismissed as “normal.” To be honest, I also believed they were normal, because it was the only thing I knew. As a teenager, I remember having severe back pain every time I had my period, along with constant digestive issues, not just during my cycle, but throughout the month. The bloating was intense, and my body never really felt at ease.
Q: How did things develop later in your life?
A: Later in my life, painful intercourse became another issue, affecting my relationships. Throughout my twenties, I was functional, but never truly well. Then, in my early thirties, everything escalated. I experienced a massive flare. Still to this day, I don’t know what triggered it. I remember one night when it started: the pain and cramping were so severe that I genuinely felt like I didn’t want to exist in that moment. From then on, the pain didn’t just come and go, it stayed. Every single day.
Q: What was your experience with the healthcare system at that point?
A: I was in and out of hospitals, only to be sent home again and again. No one seemed to understand what was happening. I was prescribed increasing amounts of medication, including strong painkillers and eventually opioids, but nothing addressed the root cause. At one point, I pushed for a laparoscopy. I was told they found nothing.
Q: Why do you think your condition was missed for so long?
A: The problem was that no one was connecting the dots. My symptoms went far beyond period pain. I had constant pelvic pain, urological symptoms, and signs consistent with interstitial cystitis or painful bladder syndrome, conditions that many women with endometriosis also experience. Even basic functions, like using the bathroom, became painful.
Q: How did this affect your daily life?
A: I watched my life disappear. I had to quit my job. I could no longer support myself or pay rent, and I had to move back in with my parents. My life became reduced to managing pain. That period was the darkest time of my life. I had lost my independence, my functionality, and any sense of certainty about the future. I didn’t know what was happening to me, how long it would last, or whether it could ever be treated.
Q: When did things begin to change?
A: Eventually, I met a physical therapist who had experienced endometriosis herself. When I described my symptoms to her, she immediately saw what others had missed. My final diagnosis was stage III deep infiltrating endometriosis. It’s the most aggressive form of endometriosis and usually affects multiple organs, in my case, the uterus, pelvic nerves, and colon, among others.
Q: What is important to stress about your symptoms?
A: What’s important to stress is that my main symptom was not period pain. And that is precisely why no one had connected my case to endometriosis for so long. We still tend to associate endometriosis primarily with menstrual pain, but the reality is that it can extend far beyond that.
My therapist connected the dots and referred me to a highly capable and empathetic surgeon. That moment marked the beginning of a slow, gradual process of getting my life back.
Q: What does healing look like after years of pain?
A: Recovery is not just physical. After years of living in constant pain, healing becomes something much more complex. Even after identifying the cause, there is no simple switch back to normal life.
There is the trauma of the experience itself.
The fear of pain that lingers.
These things do not disappear overnight.
Q: Where are you now in your journey?
A: Today, my life is infinitely better. I am in a much stronger place, and while some pain remains, it is manageable. But the emotional aftermath, the shock, the processing, the rebuilding, is still ongoing.
Q: What kind of support do patients need?
A: Endometriosis care must be holistic. Patients need more than surgery or medication. They need psychological support to process trauma. They need guidance for associated conditions, such as gastrointestinal issues, which I now manage with the help of a functional and integrative nutritionist. This kind of comprehensive care can make a profound difference. But the reality is that the path to reaching it is still far too difficult.
We continue to underestimate endometriosis, not only as a disease, but in terms of the life-altering impact it can have. It is not just about pain. It is about the loss of years, of stability, of identity, and the long, complex journey of finding your way back.
This story is a powerful reminder that endometriosis does not always look the way people expect it to. It may begin early, evolve over years, and present far beyond menstrual pain. Too often, patients face delays in diagnosis, fragmented care, and the added burden of not being heard.
As Endometriosis Awareness Month comes to an end, stories like this call for something lasting: greater awareness, earlier recognition, more empathetic clinical care, and truly holistic support for those living with the disease.
At SENSOPAD, we are committed to keeping patient experience at the center of the conversation. Because improving women’s health begins with listening, believing, and responding better.