How I learned to live with the pain of undiagnosed endometriosis

“My life has been crossed by a tearing pain in my body because of menstruation , and for a long time I didn’t know what was happening to me. When I was 15, I got my period, and from the start, it was messy and different. One evening my father was away on a trip and I asked my mother if I could have sex with her because my uterus was hurting a lot. Early in the morning I began to feel hopeless, feeling that feeling that there was no way to turn over in bed, and no remedy one could take.

I started to shiver, my joints were hard and I felt like I couldn’t take it anymore. Then I vomited in pain. I arrived at the clinic in a wheelchair where I could barely stop the bleeding, scared to death because I didn’t know how to stop it. This was the beginning of a series of consultations and failed diagnoses with different gynecological professionals. The first: insulin resistance, at 15 years old. I was skinny, I didn’t have much physical development, and something told me that wasn’t what was happening to me.

During my first visit to the clinic, I felt like I wasn’t taken into account very much. They said I was a girl, that I was starting to regulate my periods and that pain was something that happened. But None of my friends had such periods. During the study trip, when I was 17, I had my period for 35 days. It was crazy. This was the beginning of a numbing of pain in my body, fueled by my mind and birth control, for over 15 years.

When I turned 30, they had spent years doing ultrasounds for contraceptive treatments that weren’t working well: one day they told me: ‘Don’t worry, everything looks fine. ‘then six months later, others said ‘you see several cysts on the ovaries but that’s normal’ ‘, and then that “I was full of cysts and that I could never get pregnant, that it was the end of the road”. This shows how contradictory the results of all my consultations were. So I said “no more”.

At that age, I stopped taking birth control to try alternative treatments and also began to live with the pain. I invalidated myself a lot, I said to myself ‘how could I not continue functioning because of that’, I forced myself to continue working, and I also blamed myself thinking that it was me who wasn’t eating not doing well, or not doing enough sport. , which was not TRUE. This responsibility that I put on my shoulder did not have much basis, however it persisted and it did not give me rest because I did not want to say that it was due to menstrual pain.

It happened to me one day that, in my job at the time, where I held a position of high responsibility, I was invited to participate in an interview in the newspaper, where my photo was going to appear large. That day, I woke up in excruciating pain, with a period with a lot of blood, to the point that I had to put on giant pads. I threw up, fell on the bed and said, “I can’t not go to the interview.” And I left like that, shivering. I always keep the photo to remind myself that I won’t have to do these things again.

This is how I lived until last year, with this ball of fire in my uterus, which activated monthly, for which some doctors recommended that I take ibuprofen the day before, but they did not didn’t know that for me, this remedy was like having a drink. of water. . When I felt the pain coming, it started to radiate to all parts of my body: the uterus, then the stomach, then the shivers started, I had to lie down, put myself in the fetal position in moving a little because it was unbearable in any position. And then there comes a time when the feeling of not being able to contain it is so great that I vomit. Until I started to pass out.

Life without pain is totally different

My brother, who lives in the same town as me, came to help me because I called him to tell him that I thought I was going to die. He went looking for me and also asked me to do something. But I couldn’t, I had no answers. Until the day a sister doctor recommended that I go see a gynecologist who knew about endometriosis. I went there, he asked me three questions and immediately referred me to an expert doctor, my doctor to this day. He asked me for tests again, but this time with a special eye protocol for endometriosis.

I had to wait 20 years for someone to follow this protocol and find out what I really had. I investigated that one in ten fertile women suffer from endometriosis and it takes an average of 10 years to diagnose. They considered me having an operation as soon as possible, and they explained to me that it was a delicate procedure, where you wouldn’t know exactly what was happening until they opened me up and saw where my endometrium had ended up on the outside of the uterus, or worse, if it got attached to another organ. I remember crying with emotion and fear. Finally, someone was clear and transparent with me, but on the other hand, what I had was serious.

And it changed my life. It’s been almost a year since my surgery and I’m very determined to never feel the same again. Pain is like an anchor, which conditions your daily life and for which you must organize yourself. After surgery I feel like that anchor has been cut, before my body was confined, now it’s expanding and I feel healthy. I was even able to think back to my motherhood, before I could no longer think about having daughters or sons with so much pain. With this freedom, I literally feel like I’m floating in an ocean of possibilities, I can go in the water, ride a bike, skate, and in the short term, it’s wonderful.

From now on, my body is my ally in the activities I love so much, and not my enemy. It also required making decisions, like continuing to use birth control because I don’t want my endometrium to grow. But beyond the path I choose to heal myself, Being able to think about the support needed to move forward on this path has been essential . During the operation, I thought a lot about how I wanted to heal, and my thinking was that punishment has a very important individual component, but also a community and social component.

That’s why, during my recovery, I posted a question on Instagram: “Who has endometriosis?” “. Five friends answered me. We formed a group, these friends started connecting with other friends, and today there are 15 of us. It’s thanks to WhatsApp, we still don’t all know each other, but just reading each other has was extremely calming. There are some who talk more, others less, but there is always one who connects with another, or who has the information that the other needs, and we have built a database of doctors , remedies or alternative medicines. It was a wonderful company of women from different regions of Chile.

And today, I just want to stay connected in this space of support that we have created, because I feel that really, no one who can make a real change has supported us very much. If a few years ago endometriosis was not even considered a pain diagnosis, today, for example, my insurance does not consider the operation as something for which it must accompany me. And it’s great. Especially since it is a chronic illness. I would like that in community, We would see the day when others realize that for a woman with endometriosis, eliminating pain can be life-changing.

Florencia (36 years old) is a psychologist