Conversations with the Endometriosis Community featuring Swedish Parliament Member Sara Heikkinen Breitholtz
By: Brittany Villegas
For the majority of our adult lives in the western world, the profile of a standard politician has been dominated by old white men. We’ve been told that these leaders and their tough patriarchal characters are our best form of protection against financial, domestic, and international threats. We've had little choice but to believe that these "threats" dictate our personal and societal wellbeing and prevail over things like healthcare, childcare, and education.
Up until recently, we really haven’t had people in power who look like us, live like us, nor dream for a better future like us. We’ve had to suppress our needs, especially when it comes to sexual and reproductive care, for the greater good of male-dominated political platforms that typically give our concerns a modest nod.
When speaking with member of Swedish parliament and executive committee member of the European Parliamentary Forum for Sexual and Reproductive Rights (EPF) Sara Heikkinen Breitholtz (S), you can’t help but feel seen. She’s felt your pain, your frustration with a system you may have grown up believing has your best health interests, and your guilt of having to explain to your loved ones why you can’t get out of bed for them.
“Thinking about how long this journey has been and how I am still in agony every day makes me tear up, thinking about how unfair it is that we have to suffer through it,” she said.
She doesn’t suppress her vulnerabilities in fear of appearing weak, she amplifies them to ignite change. She’s open about her experiences with managing endometriosis, the effects it’s had on her personal life, how it’s influenced her political career, and how it fuels her fight for gender equality to improve the health and livelihoods of all girls, women, and uterus carriers – past and present.
We (digitally) sat down with Sara to learn more about her personal experiences with endometriosis, like when she was first diagnosed, how she copes with the pain, how it influences her career, and what her advice is for others dealing with the condition.
1. When did you first start showing symptoms of endometriosis?
Looking back in hindsight, I know I started showing symptoms when I was 12 years old and received my first period.
2. What helped you personally recognize the connection between your symptoms and having endometriosis?
I was being admitted to the hospital every couple of weeks, first in Scotland and then in Sweden. I studied law in Scotland for four years between 2005-2009. They had no idea what was wrong and I said I am not leaving until you find out what is wrong, I can no longer accept “pelvic infection” as your best guess. They had thought that I had had an ulcer as well as different types of STI’s and intestine problems. Finally, one doctor asked if I had heard of endometriosis and I said no. They decided to do a laparoscopy to determine if I had endo, what they found was endometriosis everywhere. The entire pelvic floor, the bladder and my uterus, my ovary and fallopian tubes all covered and the surgeon just closed. He did not have the skills necessary to do anything.
3. Have you received a diagnosis for endometriosis?
Yes, I was diagnosed early 2010.
4. If yes, how long after showing symptoms of endometriosis did it take to receive a proper diagnosis?
12 years from the first real symptoms, approximately.
5. What was your reaction when you received your diagnosis?
First I felt relief. Finally, something we could tackle that was real.
6. Have you had good experiences with your healthcare providers? Why/why not?
I have had both. I have had truly horrendous experiences ranging from being labeled a junkie to being told whilst almost passing out in the gynecological chair that some people just have a lower threshold for pain. But on the other hand, I have had truly amazing help from amazing doctors, primarily one without whom I would not be a mother.
A collage of Sara with her husband, son, and jultompten celebrating Christmas. Photo courtesy of her official Facebook page.
7. Would you say your experiences with treating endometriosis has influenced your career in politics? Does it guide you as you work to improve awareness and access to sexual and reproductive health rights (SRHR)?
100 % it is truly personal for me when we talk about SRHR and the right to decent care for women. It is about being treated as a human being, about being taken seriously, and for your pain to be acknowledged as real.
8. What sorts of treatments were you originally offered after receiving a diagnosis? Did they help you?
I have tried everything. The very first thing they said was do you want kids? After that, I have tried every hormonal treatment under the sun. The coil made me pass out and my uterus pushed it out within days of it being fitted. I have had all the pills and the Synarela and Lupron. On top of that, I have had seven surgeries including hysterectomy. I have tried every pain management scheme that there is.
9. What sort of treatments do you currently use?
Pain meds and Visanne. They have yet to decide what we can do next.
10. Do you think that the 2018 national guidelines for endometriosis care (Socialstyrelsens nationella riktlinjer för vård vid endometrios) has improved care for people with endometriosis in Sweden? Why/why not?
I think that they were supposed to but I am not sure that they have in actual fact. We need to increase the knowledge of endometriosis amongst all health care workers. We also need to increase the knowledge of effective pain relief and pain management for people and how that differs.
11. Is there additional support you wish you and other people with endometriosis had?
I wish we would get sufficient help with pain management, in the hospital or at home. I wish we could get true excision specialist clinics at some of our major hospitals and I wish that every single A&E doctor and nurse would be educated on endometriosis. If every single nurse and doctor would know about endometriosis I am sure most young girls who suffer would get help early on and perhaps will never have to suffer the way I do. We also need to make everyone with endometriosis aware of the help that is out there in regards to Försäkringskassan's different systems that offer financial relief for employers if you have many short-term absences.
A collage of Sara on her first day at Swedish Parliament in 2018. Photo courtesy of her official Facebook page.
12. What do you wish people were more aware of when it comes to endometriosis?
How it affects everyone differently but also how the pain in periods can be paralyzing and there is no warning. You do not know when it will pass again. Be supportive and know that we would be at the social gathering or the work thing if we could. Most of us who suffer, and suffer greatly we do more than we should and what any person who does not know what pain truly is would be able to. I might look well and smile a lot but does not mean I do not suffer.
13. Do you have any advice for people who have suspected or confirmed endometriosis?
Persevere! You have the right to healthcare and good healthcare at that. Never let anyone make you believe otherwise and make sure you have help and support. That can be a friend, a co-worker, or your family. Get the pain management that you need to lead a life. That means going out or to work. You have the right to a life!