Laia Casas: "I would wake up at six in the morning crying in pain, but I lived thinking it was normal."

BarcelonaLaia Casas is a biophysician, sexologist, and vice president of EndoCat, the endometriosis patient association, a disease she suffers from and tries to raise awareness about to break the silence surrounding it.

What made you suspect you had endometriosis, and how many years ago were you diagnosed?

— I was finally diagnosed in January 2022. I had told doctors for many years that I suffered from ovulation pain, which is one of the typical symptoms of adenomyosis, the form of the disease in the lining of the uterus. The doctor told me to take ibuprofen and keep going. I remember once telling him that the pain that used to last 20 minutes had now lasted three days. And the response was, "Well, ibuprofen for three days." I remember waking up at six in the morning crying from the pain. I knew something wasn't right, but I lived with the "pain is normal" mentality. During the pandemic, one day I couldn't stand the pain. After two years of insisting, I was diagnosed with endometriosis and told the only solution was to get an IUD. When you search for information on the internet, the world falls apart: all you find is that you'll be sick for the rest of your life or that you won't be able to have children. Some things will eventually pass, but others might not.

Have you encountered a lot of misunderstanding when you explain that you have endometriosis?

— More than incomprehension, I encounter ignorance. Most people ask, "What is this?" I try to explain what it is and what it entails. At work, I was very lucky because someone had suffered from it before me, and my colleagues remembered that person's suffering. This made things much more flexible for me. I explained to my head that I work more slowly when I'm in pain because my brain doesn't process things the same way. They adapted very well, but I'm not a typical case. Most people lose jobs, don't get probationary periods, or are rotated from job to job. I've found myself explaining to friends that I can't get off the couch because my legs hurt so much, which is one of my main symptoms, and I haven't found any support from them.

Have you always had pain?

— After the diagnosis, you review everything you've experienced throughout your life that wasn't normal. I had period pains before I even had a period, at twelve years old. My period came at fourteen and I had very heavy bleeding; I had to wear cotton pads from the hospital. I soiled myself very often: once I got up from a chair and the entire seat was red. Most people don't experience this. The signs became more widespread, but I wasn't aware of it. For a long time, I slept on absorbent hospital gauze. I received a lot of boos for staining the mattress. If I had known more about endometriosis, I might have thought that what I was experiencing wasn't normal.

The symptoms are varied, not all women have the same ones.

— There are common patterns, especially menstrual pain and infertility. Many women discover they have endometriosis when they want to have children and are unable to conceive naturally. Deep endometriosis, for example, causes many problems with defecation, urination, or movement. Some women may experience some symptoms but not others.

What possible treatments are there for endometriosis?

— Pharmacologically, it's usually addressed in a single way: contraceptives. Even so, there are surgical options that are only recommended in very severe cases because they can cause side effects. Then there's a range of non-pharmacological options, from nutrition to pelvic floor physiotherapy and psychological support. The most urgent change we need to make is that you, as a patient, must be able to decide what you want to do, and not, as is the case now, where the doctor tells you what to do. The doctor's duty or role should be to inform you of all the options available to you as a patient so that you can choose the one that best suits you and the one you're comfortable with, because, in the end, you will experience the consequences of this. The message we must convey to patients, and one that is difficult to convey, is that you must empower yourself enough to know that the final decision is yours, not a doctor's. Because you will experience the suffering.

What would you recommend to someone who has just been diagnosed with this disease?

— That she joins other sufferers. Not only because there are support groups and because the associations know the professionals who can best treat her, which aren't many, but because the more of us there are, the more our voices will be worth. One of the things we do is provide financial support for endometriosis treatment and research projects: we have projects with the Clínic and Vall d'Hebron. It's become very clear to me that if I don't fight for my illness, no one will. We, the patients, must move the world. We must lobby for research, for treatments other than contraception, for Social Security to cover all therapies, not just pharmacological ones. Also, for territorial equity: you don't have to come to Barcelona for treatment if you live in Olot, Lleida, or Vall d'Aran, as is currently the case. Some patients must travel three hours for their annual follow-up visit. If you feel unwell, before this visit you should go to an emergency room where they don't know what you have or how to treat it.