Media saved my life

I am 19 years old, turning 20 in December. At the age of 17 – the end of my junior year in high school – I started experiencing chronic pelvic pain. It was getting worse over time. Ultrasounds, colonoscopy, SIBO test, lab tests all came back normal. The symptoms lasted for over a year and I had no diagnosis. Desperately searching for relief I took to the internet and started doing my own research. I joined a facebook group for women suffering from endometriosis, which was the initial diagnosis that my doctor suspected in my case. I also followed a few accounts on Instagram that aim to spread awareness about endometriosis. Jenna, who runs the profile endometriosis.jenna, was kind enough to answer my questions when I slid into her DMs. 

My ob/gyn was not very willing to confirm the suspected diagnosis with any more specific tests. The facebook group was where I found the information about gel sonovaginography – a special kind of ultrasound that can show endometriosis adhesions. Other group members shared, which doctors in Poland (my home country) perform this type of examination. A month later I went to Warsaw for my sonovaginography. It turned out that I do not have endometriosis. The doctor suggested PCS – Pelvic Congestion Syndrome – as blood was buzzing in my dilated veins. Had it not been for the facebook group, I would still believe that I have endometriosis and limited treatment options.

Searching for doctors on the internet

The doctor in Warsaw told me that PCS is managed by vascular surgeons. Good luck finding one who has any idea what PCS is. It is a relatively new condition (was first described in literature 20 or 30 years ago). I managed to find a doctor close to where I live on the internet. He is the only one in the region. If he didn’t have an online profile, I would go from one vascular surgeon to the other and so on, trying to find the one. 

He referred me for a CT scan. The scan suggested sth else than PCS – an extremely rare condition called uterine arteriovenous malformation (AVM). Again, I found a facebook support group with only 400 women with this diagnosis from all around the world. AVMs can rupture and cause extensive bleeding that may lead to death. After I got the diagnosis, I got slight bleeding in the middle of my menstrual cycle. I didn’t know if that was a sign of an upcoming rupture. I was wondering whether I should bother my doctors with this problem or wait. I asked in the facebook group. The amount of support I got was astonishing. – If the scan shows all is okay – then that’s okay, no need to feel like you’re bothering people – it’s actually responsible to manage a known condition if you can and if anyone makes you feel otherwise- then that’s their issue – said one of the women in the group. They asked me to keep them posted. After all, the bleeding was nothing to worry about, but I got support through media when I needed it.

The vascular surgeon wasn’t sure what to do with me. He still believed it was PCS not AVM. Again on the internet, I found a clinic in Poland that deals with both of these conditions. They are pioneers in central Europe. I read the information on their website and filled in a contact form. Thanks to media, you no longer need to drive 6 hours for a consultation. They emailed me back within a week asking me to send my results. I used wetransfer. A month later they made an MRI to give me a definite diagnosis – PCS. Another week later they performed embolization to shut off the varicose veins in my uterine venous plexus. Recovery was a bumpy road and again the ladies in the facebook support group helped me go through it.

Fellow sufferers understand

My family was sorry for me, but never understood what I was going through. Neither did my friends. Fellow sufferers understand each other, cause every day we face the same pain, the same challenges, the same lack of understanding from the society. When you are a woman with a health problem, you need to fight for yourself to get a diagnosis and treatment, which is emotionally exhausting. Facebook groups – of course coming with a risk of trolls – give a safe space to vent. They are like live support groups, but those you won’t find in every place when you have a relatively rare condition. There is also an instagram profile that I follow called thechronicallyhonest. The person who runs it illustrates the feelings you face when battling a chronic illness. Her posts were so relatable that I would cry when scrolling through her page. The people in my media made feel less alone.

Spreading awareness

Another thing that I love about media is that they can be used to spread awareness. That’s what I do now. I interviewed one of my doctors about PCS and published the interview in a newspaper both in print and online, so that other women can have easy access to information about this illness, its causes, symptoms and treatment options. I also logged into the page for my condition at StuffThatWorks, which crowdsources information about best treatments for certain health issues. In total it has 2 milion members.

I also made an appearance at Sickboy Podcast where interviewed by Jeremy, Brian and Taylor I told the entire world about my experience with Pelvic Congestion Syndrome encouraging women to advocate for themselves.

Media are my life

Media not only saved my life. My life is all about media, cause I am a journalist. I started young – running a school newspaper for four years. Then I joined the team of young people that created a monthly addition to the local branch of a national newspaper. My portfolio granted me a place at The School of The New York Times, which was the best adventure of my life so far. After graduating high school I was offered a full-time job at the local branch of the national newspaper (Gazeta Wyborcza). I took it. Even though it was the time when I was battling my debilitating illness, I managed to continue working because I only worked from home (due to COVID). After I left for Amsterdam, I switched to part-time. It is amazing that being so far from Poland, I can still write and publish reportages and interviews in my newspaper.

This job is stressful, demanding and frustrating. You can’t get it out of your head even on a free day and you are always under pressure. Why do I love it then? Because I am crazy? This too probably. But I love it mainly because I love people. It is a special feeling when a mother of a dying child reaches out to you asking to tell their story, when a woman who was denied embriopatological abortion shares her story, when a member of the parliament sends you a text saying „thank you for this article”. Every day this job brings me a wide range of emotions. It is impactful. I don’t care that the president of my city hated me after I wrote about the poor salaries of social workers cause a week after the publication they got pay rises. Can you change the world with writing? Not the entire world for sure. But I keep changing people’s worlds through media. And that’s beautiful.

Published by deuzemedialife

Mediastudies, University of Amsterdam

Leave a comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: