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“Can you imagine how anxious the patient gets to understand what is happening to her?”, says Dr. Carolina Torquato, a Brazilian gynecologist that explains to us the difficulty of women in pain because of endometriosis. “First of all, the patient can have chronic pain that it’s usually associated with depression and anxiety because this pain doesn’t go away. So, if we don’t treat the pain, the patient gets worse, psychologically speaking. Some studies show that it takes seven years after the beginning of symptoms to diagnose endometriosis”.
We’re in March, the endometriosis awareness month and, for those of you who had never heard of it, endometriosis is a very common disease. Doctors say that five to ten percent of women have endometriosis. But yet the people with that condition usually tend to discover very late in age and only find out after long years in physical pain and stressing themselves trying to discover what it is that they’re feeling. ]
What is endometriosis?
To begin, let’s explain what the disease is: Endometriosis is a benign gynecological disease, which means it doesn’t evolve to cancer. It’s also chronic, so it lasts more than a year to be dealt with and requires constant medical care. This disease consists of increasing the endometrium outside the uterus.
All of that medical stuff can be hard to understand, but it basically means that the layer that is used to bleed inside the uterus, what is called a period, is bleeding outside the uterus. And, when that happens, it causes inflammation on the pelvis. So that’s why this disease is distinguished by pain.
“The other thing we need to highlight is that the patient has a risk of infertility. When we deliver the diagnosis to women, usually the first question they ask is ‘Can I get pregnant?’, but not every patient will suffer from infertility. We have to investigate. And precisely because it’s a more complicated diagnosis, that depends on specific exams, it creates a lot of anxiety, because the patient is usually being investigated for five years or more”, says Carolina.
Why is it so hard to diagnose?
Dr. Torquato gives several reasons why this happens. “Since it’s a disease with several ways of appearance, it is difficult to diagnose. The second reason is the negligence of symptoms. ‘Cramps are normal. Pain during the sexual course is normal.’ None of this is normal. Another reason is self-medication. These are three factors that, when together, contribute to the difficulty to get the diagnosis”. She also addresses a social problem that highlights the distress of women with no access to health services that can attend to their needs to diagnose, and potentially, treat endometriosis. “Besides São Paulo, where we have access to exams, sometimes in other cities from Brazil it’s hard to diagnose because the two exams we use to diagnose are very specific, so they may not have access to those”.
However, Flávia Marcelino, 49, has another explanation. She has not only been a patient of the disease, but she also is the President of a project that she co-founded in Santos, a seaside town in São Paulo, focused on how to capacitate medical professionals and to raise awareness of the disease. The project is called “Endomulheres” and Flávia shares her story and why she created this support system for women with endometriosis. “My motivation to create the Association was the endometriosis itself. I had endometriosis for 31 years without the right diagnosis. All doctors used to say it was nothing, that it was just cramps. I only got diagnosed with endometriosis after I turned 40 years old when I had internal bleeding and went up to the emergency room”.
Before this episode, Flávia had never heard of endometriosis, but after finally getting her diagnosis, she looked for medical help. Along with the treatment, she joined an online support group for women in São Paulo suffering from the same thing as her. That’s where she met Romilda Gadi. Romilda is the vice president and also a patient with endometriosis. They found out they lived in the same city, Santos, and started the project together in 2016. Initially, it all started with conversation and coffee for women to share information about what they were going through and what to do about it, but then, in 2019, they formalized it and became an association.
Flávia’s explanation on the difficulty of diagnosing women with endometriosis is not that different from Dr. Carolina’s explanation. “We realized we were missing professional help and knowledge about the disease in our city. In my case, I had to search for a professional specialized in treatment in Santos. Until this day, there are only three specialized doctors. Romilda was already doing her treatment in São Paulo, where there’s a more extensive chain of professionals. But still, the biggest problem is the knowledge from the medical area and the awareness of the disease”.
In a nutshell, there are a lot of reasons why endometriosis is so hard to diagnose. But, what is clear is that awareness is everything. It should be a disease considered dangerous for everyone, not just women in pain or wanting to get pregnant. Everyone should get concerned about endometriosis because it is a concerning disease. If you know someone who has a hard time with their period, tell them to have that checked in. It won’t hurt anyone to do an exam just to be sure. And, as for the access to health care across Brazil, we all know we still have a long ride for that to improve.
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The article above was written by Beatriz Cyrino and edited by Marina Ponchio. Liked this type of content? Check out Her Campus Casper Libero for more!