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Living with endometriosis: a first-person account

There are many ways of living with endometriosis. Erika shared her own experience alongside precious advice.

By Giada | 24 April 2022
An illustration depicts a person suffering from endometriosis
Illustration by Cecilia Grandi

Erika got her endometriosis diagnosis a little over a year ago. Living with endometriosis is complex and no two experiences are the same; Erika shares hers on Instagram in a somewhat lighthearted way, with a smile on her face. We discussed her journey and how putting words on the disease is helping fellow sufferers.

1. How would you explain endometriosis to someone who has never heard of it before?

I would explain it for what it is: a debilitating chronic disease that doesn’t solely affect the female reproductive organs but a number of other body parts and organs, which is why it is especially debilitating.

2. When and how did you discover you suffer from endometriosis?

I discover I suffer from endometriosis in January 2021 when I started listening to my body properly and looking for information online. I had started feeling chronic pelvic pain around the left ovary and months on, the pain was still vivd. I got suspicious and brought it up to a gynaecologist who was adamant I wasn’t suffering from endometriosis. I went on Facebook however and joined a group where every account resonated with my own story. That is when I realised I needed a specialised gynaecologist and two weeks later I went to a dedicated clinic where I finally got an answer!

3. Often underestimated and not taken seriously, living with endometriosis can be a life-changer. How would you describe your life today?

Living with endometriosis is life-changing. It is an evolving disease, meaning that every day comes with the risk of no longer being able to do things you easily managed the day before. My life has changed in both positive and negative ways: the positive comes from being more aware of what happens to me, who really cares about me (and who doesn’t) and I have met a number of incredible people who know exactly what I have been going through; the negative aspects are about how fast the disease worsened over the course of three months, forcing me to undergo surgery from which I still haven’t fully recovered.

4. Do you feel the healthcare system does enough to support endometriosis patients?

There is a number of things an endometriosis patient has to do, without any financial support. They need to take a daily treatment, they need to undergo a number of frequent medical examinations. which often come with long waiting times no matter how urgent. Despite it all, we often hear sentences such as “it’s just a bellyacheEndometriosis feels like something of a luxury disease.

5. Do you think adequate sexual education, including on menstrual themes, might help people recognise and manage endometriosis better?

Absolutely! Proper education on sexual health and wellness topics would have been a dream as a teenager. Being given access to proper resources would help everyone get faster and better diagnosis.

6.Any word of advice for anyone living with endometriosis?

The only advice I would give is to learn to listen to one’s body and pay less attention to people who keep talking without listening. Our body often gives us valuable signals, and we need to listen to them and understand them to give it what it needs.

Erika @endo.metriosi

About Erika / @endo.metriosi

Erika, 24, was diagnosed with endometriosis a year ago. That came after years of thinking she was crazy and suffering without getting any help from the many doctors she went to for help.

After “finally” getting diagnosed, she could breathe a sigh of relief and resume enjoying life, smiling, horse riding, travelling and more.

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