‘Endo fighter’: “5 years have passed since the first time the doctors had the answer right in front of their eyes, but they didn’t know how to diagnose”

2023-05-03 13:16:59

“Usually healthy?” A simple question that doctors ask in every routine or urgent meeting at the clinic. Until a few years ago, I would answer ‘yes’, without hesitation. Even though I was sick, I just wasn’t diagnosed.

I am Roni, a patient diagnosed with endometriosis, a chronic female disease that affects 1 in 10 women. Endometriosis is a very tricky disease, it manifests itself differently for everyone, and therefore it is also very difficult to diagnose. The average delay in diagnosis is 11 years! So when do you actually count? From the onset of the first symptoms? From the first time I went to the doctor and he didn’t know how to answer me? Or from the first hospitalization in a hospital? For me, the delay is 5 years, and I count it from the first hospitalization, from the first time the doctors had the answer right in front of their eyes but they didn’t know how to diagnose.

In my military service, I served in a closed base, and following strong and sudden pains, I was sent to the emergency room near the base. I was on my period, but it didn’t feel like normal pain. It felt like a Tasmanian devil raging in my stomach or like iron wires between my internal organs. Really not close to period pains as they are described in advertisements, or as I felt before. I arrived at the gynecology department, where they suspected that I had an ectopic pregnancy, while I was on my period. They conducted blood tests, and after a sleepless night from pain and fear, I was informed that I actually had nothing and I was released back to the base. I was left without answers, with a very painful period every month. I would go to the ER every month if I didn’t know that I actually “have nothing.”

Time passed and I arrived at the university. During an exam period I started to feel strong pains on my right side, regardless of my period. I was in pain, but it’s exam period and I have to study and concentrate, so I took painkillers and imagined that everything was fine. Between tests I went to the family doctor and the gynecologist who found nothing, but to be safe they sent me for an X-ray. In a quick check, the next appointment was in 4 months. I went back to concentrating on the tests until the last one I could no longer concentrate because of the pain.

That night I ended up in the ER again, with pain so bad I couldn’t stand up straight. The ER team was of course busy, but one of the nurses actually had time to remind me that they don’t come to the ER because of “stomach aches”. FYI- endometriosis patients have a whole arsenal of punch lines from the medical staff. And that’s how the night went: in the gynecological tests they did on me, a diagnosis came – you have a cyst in the ovary, Cora. Luckily the morning came already and the doctors changed, a new and alert doctor came and asked to check just one more time with a more accurate ultrasound, where one of the doctors said the word “endometrioma”. I was still sent home with the instructions: ‘If you throw up, come back.’

Less than a week passed and I returned to the emergency department of another hospital in the center of the country with all the forms from the previous hospital, where they told me that I was lucky that the same ultrasound specialist doctor said endometrioma and they started asking me a bunch of questions. “Ever heard of endometriosis?” – ‘No’, I replied, but when they started going through the list of symptoms, I was able to put a V on almost everything: the disease manifests itself in chronic pain during menstruation, ovulation, intercourse, difficulties in the digestive system around the period, chronic fatigue, fertility difficulties and much more. That’s where my journey really began. There’s a name for what I’m going through, I’m not spoiled and it’s not “just” period pains.

I was diagnosed with deep endometriosis, endometrial-like lesions migrated and stuck throughout my pelvis, ovaries, uterus, intestine… in short, a celebration. With the help of an expert and supportive medical team, hormone therapy, lifestyle changes, nutrition and adapted sports, I was able to stabilize. The pain has decreased but there are still pain attacks that interfere with the way of life.

And that’s just my story. But there are so many different stories about lack of diagnosis, about lack of awareness, about a lot of pain and sadness around a silenced disease because talking about the female cycle is not normal. The lack of awareness of the disease bothered me a lot, and I made sure to tell about what I was going through at every opportunity. From the moment of the diagnosis, all the works in my studies dealt with endometriosis, I studied the disease from all possible directions. I published posts on social networks, and shared the amazing work of the “Israel Endometriosis Association”.

As part of my master’s degree in learning technologies, I went one step further to raise awareness of endometriosis: I produced and edited a podcast on the subject called “Endo Fighter”. In the episodes I interviewed professionals in the field – a doctor, a nutritionist and the CEO of the association, as well as female fighters and their relatives. The main goal of the podcast is to raise awareness and create learning about the disease, in order to create support for patients and their relatives. I presented the podcast and the research I conducted on the subject at the Chase conference for learning technologies at the Open University, and there too I found great interest in the subject and Lando sisters. Since it aired, I have been receiving heartwarming responses from endo warriors who listened and connected or family members and friends who learned and understood a little more what endometriosis is.

I call on everyone – if you know someone or if you yourself suffer from pain during menstruation/ovulation/having intercourse or chronic pain in the pelvic area, difficulties getting pregnant, abnormal bleeding or any of the other symptoms surrounding the menstrual cycle – it can be It has a name. You are invited to search the website of the association – ‘Endometriosis Israel’ and find a lot of necessary information and a supportive community. With the help of awareness and discourse on the subject, more girls will be diagnosed on time, more doctors will specialize in the disease and there will be more information on the subject. And if you happen to be part of a medical team, try to be more sensitive to patients and really find what is bothering them, even if they are not aware of it.

Thank you, Roni, one in ten women has endometriosis.