Gendered Medical Gaslighting and the Copper IUD

A conversation with political scientist Flor Kot Hansen and author Caren Beilin, victims of the IUD
By The Esperanza Project
October 1, 2020

“Flor Kot Hansen and Caren Beilin are two women whose lives have been upended by the side effects of the copper IUD, a birth control device whose impact around the world has been enormous and has received little media attention. And they are each, in their own way, trying to do something about it.

Flor is a feminist political scientist and a former victim of the copper IUD who shares important information on the under-reported side effects of the device from her social media accounts and her blog, Cuidado con el DIU de Cobre (Beware the Copper IUD). The Argentine activist is currently working with Esperanza Project Foundation co-founder Hernán Vilchez on “When Bodies Talk,” a documentary about her journey with recovery and her work to get the word out about the problems of copper IUD toxicity.

She recently launched a global awareness campaign to make visible the under-informed side effects of contraceptives called #ItsTime. The main goal of the campaign was to invite women from all over the world to share an informative flyer and their stories with contraceptives. The campaign reached more than 150,000 people and she received thousands of testimonies about bad experiences with contraceptives. At this moment, she is recruiting a team to start an NGO to bring the feminist revolution to the healthcare system. 

Caren, for her part, authored a book about the issue called Blackfishing the IUD, a collaboratively written memoir about reproductive health and the IUD, gendered medical gaslighting and activism in the chronic illness community. She considers the copper IUD to be responsible for triggering her sudden onset of rheumatoid arthritis. Both women share research and patient testimonies that suggest the copper IUD is actually sickening quite a lot of women in a few different ways.

Caren recently interviewed Flor for the Blackfishing the IUD podcast featuring authors and activists and patients who have been deeply affected by the IUD or by gendered medical gaslighting in general. Here we share an edited transcript.”

Flor:
”I became aware of copper toxicity in 2012 after suffering a huge deal. I had the copper IUD for a year and a half and I looked for information in Spanish first on the Internet, because I suspected that it could be my birth control, but I found nothing. So I continued suffering. And then one day I said, “I should look for information in English.” And then I stumbled upon thousands of cases of women suffering the same thing: From one day to the other they started feeling bad and they didn’t understand what was going on with them. And the first forum that I found was in Mothering magazine: hundreds of cases of women suffering the same. So that’s when I decided to remove the IUD, and then I created the group.”

“And I remember telling a friend that I had repetitive dreams of going bald because I was losing my hair, too. I remember thinking about the iud. That’s why I did a hormonal check and everything came out fine. So I said, I need to go to a psychiatrist because I can’t find any explanation. I was starting to feel unable to go to work, and it was affecting me a lot in my mood. So I went to a psychiatrist, who gave me antidepressants and they helped me for a while. But that sensation in my stomach didn’t go away. And it came a lot when I was ovulating. And then I started looking for answers on the Internet in English, and then I read all the stories so similar to mine and I said “It’s the copper IUD!” I had no doubt.

I read about copper toxicity in some pages and it was all the things that I was experiencing: anxiety, panic attacks, depression, insomnia, acne, hair loss, joint pain. I had all those symptoms. When I went to the doctor for removal, I asked him if it could be the IUD and he said it’s impossible. “And I said, well, OK, remove it.” And I left the office and then, well, I started this path of trying to get better.

I was very insecure. At first, my husband didn’t believe in me, my doctors didn’t believe in me. I couldn’t tell my friends in a way they could support me. So I felt very lonely. The only support that I found was in this group that grew very quickly in 2012, and there were no Facebook groups. This Yahoo group was a great tool for all of us.”

Caren:
”You know, my story sort of feels like an extreme one — after six days only, my whole body was humming with copper. It was like smoking out of me, I stank of copper. I was obviously getting so poisoned by it and then just got it out in this very emergency manner. And some of my symptoms were psychological anxiety, panic, heart palpitations, things like that.

But then the month that I had it taken out, I started experiencing really severe joint pain, which ultimately led to a diagnosis of rheumatoid arthritis. So I would have just really benefited from awareness and a warning that if you have auto immunity in your family, you might not want the IUD. I mean, I personally think that there are many other reasons not to want the IUD. We just have such a leap to make because for a long time this was the big feminist movement to get on birth control.”

“It’s quite normal now that we know the hormonal contraceptives can produce symptoms in the brain. But we need to make available information about the copper IUD for people to know all the symptoms that you can have in your emotions. I’m a feminist. I support the use of contraceptives, but we need to have access to all the information.”

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