Being Diagnosed With Endometriosis Was One of the Best Moments of My Life

Erica Santoni, Contributor

When it all started

The first time I had my period I was in middle school. The end of classes was fast approaching and, after the initial shock of seeing my underwear full of blood, all I could think of was that my summer at the seaside would have been ruined. No more sea bathing, running in the sun or jumping around playing beach volley. Only crosswords under the beach umbrella, rigorously wearing shorts.

While I admit my summers since then have not been that dramatic, little did I know back then about how much suffering I would have gone through because of my period.

Growing up

Since that summer, my periods have been the moment of the month I would fear the most. They were not just painful, they were excruciating and debilitating. It felt like being stabbed multiple times. I would spend hours cramping and spasming between my bed and the bathroom, unable of standing straight, or having a conversation, or doing anything beyond purely surviving. I skipped days and days of class throughout my education — from middle school all the way through college — because of period cramps. I also skipped days while working at BCG. I remember one day I just could not keep working and had to go home, and another consultant had to escort me to a cab because I was barely able to stand by myself.

Growing up, nobody told me that this pain was not normal. On the contrary, nobody was surprised — not even doctors. For years, every OBGYN I talked to only prescribed me painkillers (and I changed many doctors until recently meeting the right one). I would take very strong painkillers as soon as I knew my period was approaching, and even then, I would just spend at least a couple of days in bed.

The turning point

One night in early 2017, I was at my parent’s house, my period just started, and I stood up from my bed to go to the bathroom. I fell down on the floor because of the pain. I just could not move, my body entirely focused on managing the pain coming from my stomach. The pain was so intense I initially thought it was appendicitis. I could barely call for help, and my parents seeing me on the floor wanted to bring me to the hospital. My OBGYN later told me that I was lucky not to go to the emergency room that night because they would have most probably operated on me for the wrong reason. I spent the whole night sweating and shaking without being able to sleep. When I recovered after a couple of days I went to my see my doctor and my OBGYN, who suggested I should do a transvaginal ultrasound, which I did a few weeks later. From the ultrasound, it came up I had cysts in my ovaries, big enough to make it clear that I was suffering from endometriosis.

As scary as that unknown word sounded to me, it was such a relief to finally be diagnosed.

Finally, I could put a name on the severe menstrual cramping that had accompanied me for the entire 15 years of my reproductive life. Finally, I had the proof that no, it was not normal to suffer that much. Finally, I could develop a strategy together with my doctor to tackle the problem. I felt empowered.

Life after the diagnosis

What my OBGYN suggested me was to surgically remove the cysts through a laparoscopy, and this is what he and his team did a couple of months after the ultrasound — quite strategically, between phase one and phase two of the project I was doing (#consultinglife). The laparoscopy confirmed the endometriosis diagnosis. Since then, I have been following a therapy to keep my endometriosis in check: I take an endometriosis-specific pill thanks to which periods and cramps are gone. My life has improved dramatically!!

Endometriosis is very painful, but the delay in understanding that you have indeed endometriosis is the real problem. Once you know you have it, you can manage it and your quality of life will increase dramatically.

You are not alone. I have thought a lot about whether I should write this article or not. “Isn’t this too personal?” someone challenged me. Yes and no: yes, I have endometriosis, but also other millions of women suffer from it.

Endometriosis affects 1 in 10 women, but I don’t know anyone else personally who suffer from it except myself. Why?

Many women are still not diagnosed. If I hadn’t had that extreme attack of pain in the first place, I probably still would not know I have endometriosis. And I think this is the story of many other women who still need to be diagnosed. Also, we don’t talk about it. As I put a lot of thought into opening up about my condition, many other women who suffer from endometriosis live silently with their pain.

I wrote this article to raise awareness around endometriosis, hoping that sharing my story will help increase timely diagnosis and in general a more open conversation around the issue. If you suffer from strong period pain, go see an OBGYN specialized in endometriosis. Spread the word with your friends and family, let’s normalize the conversation around menstruation and period cramps!

Erica Santoni (MBA ’19) is Co-President of the Women’s Student Association. Italian by birth and European at heart, she lived in Milan, Paris and London before moving to Boston in 2017. Prior to HBS, she worked in management consulting, fostering gender equity through Women@BCG. After HBS, she plans to focus her career on promoting Diversity & Inclusion in the workforce. She loves eating sushi, going to the theater, and talking about gender equity.