Why it took two years to diagnose my ‘textbook’ endometriosis

[Trigger warning: discusses medical trauma and reference to miscarriage]

My journey to a diagnosis of endometriosis was lengthy, complicated, and at times bordered on medical malpractice. Unfortunately, this type of journey is far more common than many people realize.

I began experiencing severe pelvic pain in 2020, and I vividly remember the first time it sent me to the hospital. At the time, I was living in the United States. There is often a perception that the US medical system outperforms the UK’s, but my story hopefully sheds light on what many women face across all healthcare systems.

I was working a shift at Starbucks when I suddenly felt the sharpest pain I had ever experienced in my life. I became dizzy, lightheaded, and extremely nauseous. I immediately told my manager that something was wrong and that I needed to go to the hospital, which luckily was directly across the street.

He told me that I needed approval from the store manager to leave early. Unfortunately, the store manager was not working that shift, so he texted her and told me I could not leave until she replied. After waiting around ten minutes for a response, I realised I had to make a decision - my health or my college part-time job. I chose my health and left for the hospital, effectively quitting on the spot.

I later spoke with Starbucks corporate about what happened and was informed that the employees at that store were required to complete training related to gender discrimination in the workplace.

At the hospital, I was admitted to the emergency room and began explaining my symptoms to the medical staff. A nurse inserted an IV into my arm for fluids while asking the standard questions about what had been happening. As expected, she asked if I could possibly be pregnant. We were still waiting for the results of my pregnancy test, as the doctor had not yet reviewed it.

Trying to lighten the moment slightly, I joked that if I were pregnant, I would not be keeping it anyway.

She looked me directly in the eyes and told me that I was currently miscarrying and therefore would not need to worry about terminating the pregnancy because it was “naturally happening”.

I was completely stunned. Speechless, I sat there processing the fact that I had supposedly been told I was having a miscarriage — and also the shocking way the nurse had chosen to tell me. Without saying anything further, she left the room to tend to other patients, leaving me alone in silence.

I called my mom, who lived in another state, and told her that I was in the hospital and had been told I was miscarrying. She immediately asked whether my pregnancy test had come back positive or negative. I was on Nexplanon, the arm implant birth control, and pregnancy was extremely unlikely.

That’s when I realised the test results had not come back at all.

The nurse had told me I was miscarrying without even seeing the results.

Shortly afterward, the doctor came into the room and confirmed that I was not pregnant. They wanted to perform an internal ultrasound to investigate further. Still in shock, I sat alone in the hospital room in immense pain, having just been told I was miscarrying and then that I had never been pregnant in the first place. I do not want children, and nor have I ever, so if they were going to tell anyone this news and then retract it, I am glad it was me. However, if they had told this news to most likely anyone else, it would have been even more traumatic. To this day, I do not understand why the nurse decided to jump to a conclusion that wasn’t even feasible, and I utterly hope that I was the only one she made that mistake with.

Compared to the beginning, the rest of the hospital visit was relatively uneventful. The doctors ultimately told me they did not know what was wrong and suggested it was simply severe period pain. Since they were the medical professionals and I was not, I trusted their assessment and tried to move on with my life.

Except my life stopped feeling normal.

I visited numerous doctors, and each one offered a different explanation. At one point, I was told I had a mass on my ovary that mysteriously disappeared by the time I had my second CT scan. Another doctor told me that my IUD had travelled into my fallopian tube and required emergency removal; it, in fact, had not gone into my fallopian tube, but I still had the emergency removal to prove that it didn’t. On another visit, I was told that I was internally bleeding but that there was nothing to worry about, and I was discharged from the emergency room with instructions to return if it got worse, despite having no way of knowing how I would recognise worsening internal bleeding. I was under the impression that internal bleeding was a dire issue and already life-threatening. The fact that they did not explain further or reassure me in any way, unfortunately, became a regular occurrence.

These various diagnoses resulted in me being prescribed double the recommended amount of birth control along with strong painkillers. Throughout all of this, I repeatedly told doctors that I believed I might have endometriosis and asked whether it could be investigated. I was always dismissed when I spoke up, and they said that endometriosis was very rare (it is not, and even if it was, that doesn’t mean someone doesn’t have it).

Eventually, I convinced a specialist to perform a diagnostic laparoscopy to determine whether endometriosis was present. I remember feeling incredibly hopeful that I might finally get some answers.

Unfortunately, that hope quickly disappeared.

On the day of my surgery, I was placed under anaesthesia while my friend waited in the waiting room. The entire procedure lasted twenty minutes. While diagnostic laparoscopies are not particularly long procedures, the twenty minutes included both the administration of anaesthesia and my waking up afterward. In total, I was in the operating room for around ten minutes.

When my friend saw me so quickly afterward, she asked the doctor if something had gone wrong. The doctor reassured her that everything had gone perfectly and that I did not have endometriosis. It had gone so smoothly, she explained, that it only took ten minutes to pump my body full of gas, make an incision, insert the laparoscope, and stitch me back up.

I left that appointment feeling frustrated and defeated. I knew deep down that I was not being taken seriously, and at that point, I began to believe I would never receive a diagnosis and would simply have to live with the pain.

After nearly two years of dealing with excruciating symptoms, I decided to try one last time. I visited the final specialist in my area, whom I had not yet seen.

I walked into the appointment expecting to hear the same thing I had heard before — that my laparoscopy showed no endometrial tissue and that my pain was simply menstrual cramps.

Instead, after asking about my symptoms for about ten minutes, he looked at me and said that I had “a textbook case of endometriosis”. I burst into tears.

For the first time, I felt like someone had truly listened to me. I asked him about the previous laparoscopy, and he explained that diagnosing endometriosis can be extremely difficult. Many women who undergo laparoscopic procedures do not show visible endometrial tissue, even when the disease is present. While laparoscopies can be helpful, they are not always definitive — especially if the procedure is extremely brief.

He also acknowledged that endometriosis is often diagnosed based on symptoms rather than clear surgical evidence, which many doctors are hesitant to rely on.

My diagnosis took two years, which, unfortunately, is on the quicker side for most women. Since receiving that diagnosis, I have continued to experience pain but have learned to manage my symptoms largely without severe medical assistance. After being diagnosed and continuing with the pain, I had a consultation in the States regarding a hysterectomy. As I do not want children, this option seemed the most efficient to me. After the doctor asked me my age and if I was in a relationship, she told me that she would not perform the hysterectomy on me as it would “affect my marriage prospects”. This was yet another disappointing and belittling experience with the health system.

I have gone down to one type of birth control specifically known to help with endometriosis and take pain medication when needed. Unfortunately, there is still no cure or definitive treatment for endometriosis, other than a hysterectomy, and many women live with this condition every day without proper support or diagnosis. Although there is a clear route to treatment and even a cure - a hysterectomy - getting that procedure done is almost impossible.

In many ways, I consider myself lucky to have eventually received a diagnosis, even after such a long and difficult journey. I do not take that for granted.

My hope in sharing this story is that women’s pain will be taken seriously in the medical field, no matter where they are. And that someone reads this, finds hope that a diagnosis is possible, and feels less alone.