Eniko Adesanya On Living with Endometriosis, Adenomyosis, and Fibroids

Endometriosis is often called an “invisible illness,” but for millions of women, the pain is very real indeed. It is chronic and too often ignored. My own experience started not with a typical symptom, but with pain that no one took seriously. This shows how misunderstood the condition still is, even in healthcare.

In April 2022, I started having pain in my right buttock that spread to my hip and the front of my right thigh. The pain was constant and almost unbearable. At first, doctors said it was a muscle spasm; then they called it sciatica, even though my symptoms didn’t match and I passed the sciatica test. Still, that diagnosis stayed. I was sent to physiotherapy and spent months hoping it would help; however, the pain only got worse.

By December 2022, after months of escalating symptoms and no progress, I was finally seen by a senior physiotherapist who took my concerns seriously. She ordered an MRI scan, something that should have been done far earlier. That scan revealed a large cyst on my ovary. Blood tests also showed elevated CA-125 levels, a tumour marker often associated with ovarian cancer.

In February 2023, I was seen by a gynaecological oncologist. He ordered another MRI scan, and it was scheduled so quickly that it scared me. I got a call the next day telling me to come in right away. If it wasn’t serious, why the rush? Thankfully, the results showed no cancer. Instead, they suggested endometriosis. My relief soon turned into frustration.

I was referred to an endometriosis specialist and finally saw him in July 2023. Even with clear scans, a long history of pain, and very heavy, painful periods, my symptoms were dismissed. I was told endometriosis “wouldn’t cause this kind of pain” and advised to lose weight to help. This was devastating. Once again, my experience was ignored, and I was made to feel like the pain was my fault.

Endometriosis affects about one in ten women, but it usually takes years to get a diagnosis. This isn’t because the disease is rare or unimportant, but because women’s pain is often minimised. Endometriosis looks different for everyone. It can cause pelvic pain, heavy periods, painful sex, bowel and bladder problems, nerve pain, fatigue, and infertility. It can even look like sciatica or other conditions. Still, if symptoms don’t fit a narrow idea, they are often ignored.

By the time I saw the specialist, I was begging for surgery. I didn’t want an invasive procedure, but I needed answers, validation, and relief. Even if there was only a small chance it would help, I was willing to try. I was finally put on the waiting list for surgery.

In January 2024, I finally underwent laparoscopy.

The surgery confirmed everything I had felt for almost two years. I had severe endometriosis, fibroids, adenomyosis, and blocked fallopian tubes. Natural conception was no longer possible, which was heartbreaking after years of trying. This was not “minor” endometriosis or something that “wouldn’t cause pain.” It was a serious, life-changing condition that had been missed and untreated for too long. One cyst was pressing on my femoral nerve for almost two years. The pain was real.

Endometriosis is not just “bad periods.” It is not something women should have to put up with. It is a progressive disease that can affect fertility, mental health, relationships, and quality of life. Because there is not enough awareness or education in society and healthcare, too many women suffer in silence and doubt themselves.

One of the most damaging aspects of this journey was not just the physical pain, but the emotional toll of not being believed. Being told your pain is exaggerated, imagined, or self-inflicted creates deep psychological scars. It teaches women to doubt their instincts and accept suffering as normal. It should not be this way. Awareness is important because early diagnosis is important. Listening matters. Believing women matters.

If there is one message I want to share, it is this: listen to your body. If something feels wrong, it probably is. Push for answers. Ask for second opinions. Advocate for yourself, even when it feels uncomfortable or exhausting. You deserve to be heard, and you deserve appropriate care.

To healthcare professionals: please remember that not all pain fits textbook descriptions. Endometriosis is complex and different for everyone. A woman knows her own body best.

Finally, to every woman reading this who is struggling, questioning, or feeling ignored: you are not weak, you are not dramatic, and you are not alone. Keep speaking up until you are heard. Awareness is the first step to change, and sharing our stories is how change starts.