Conversations With the Endometriosis Community Featuring Mika L.

Mika lounging on the couch with her snoozing pup Ludde. Photo courtesy of Mika’s Instagram @ibicubavitlamia.

When we launched the very first version of the Endometrix app in July 2020, Mika was one of the first persons to leave us feedback.

The kindness she displayed in her short, yet sweet message had us eager to learn more about her life and her experiences with endometriosis.

Mika is 28 years old and lives in a cozy region of Sweden called Småland. It's home to excellent-tasting butter, classic Swedish clogs called träskor, some of the most beautiful forests in the world, and the first Ikea factory.

"I live in a cozy house built in the 1930s, close to the woods in the southern part of Småland with my partner Rickard and our pets, a dog named Ludde and a cat named Pilsner-Uffe," she said. "I moved here from Gothenburg four years ago, but I'm originally from Dalarna." 

Mika works full time as an archivist, but she also studied archeology and ancient history at the University of Gothenburg. While studying, she spent her free time setting up metal gigs for small music venues in Gothenburg, and also volunteered at music festivals.

"[It] was absolutely amazing, and something I would love to do again sometime!" she said.

Mika has a creative soul, with some of her hobbies including photography, watching movies, going to shows (mostly metal and some punk), making silver jewelry, and lately, taking care of plants. 

"I went from zero plants in the house in January, and now I have over 30 plants at home," she said. "I don't know how it turned out this way, but I like it. The cat however isn't as impressed because I occupied his favorite sleeping place, the window board, with some of the plants. Sorry, Pilsner-Uffe."

She also has a passion for makeup and skincare products. 

"It's my way of feeling better when in pain or feeling tired or sad," she said.

We reached out to Mika to also learn about additional ways she's found comfort while managing endometriosis over the years, and also what her experience has been like with the Swedish healthcare system, what she wishes more people knew about endometriosis, and what advice she has for fellow endowarriors.

1. When did you first start showing symptoms for endometriosis?

From the beginning of my first period, which I got when I was about 12 years old. But back then I thought it was normal with severe pain and to stay home from school. I tried getting help from the youth care and health care but everyone said pain was normal. But my first symptoms when I had to visit the ER was in 2013 or 2014.

2. What helped you personally recognize the connection between your symptoms and having endometriosis?

It was actually a good male friend of mine who had read an article about endometriosis while he was eating breakfast at his work, and linked it to me and said "this totally sounds like you" I read it and thought the same. This was in 2013.

3. Have you received a diagnosis for endometriosis?

Yes, by laparoscopic surgery in 2017. 

4. If yes, how long after showing symptoms of endometriosis did it take to receive a proper diagnosis?

About 13 years from first symptoms and seeking help to the diagnostic surgery. 

5. Also, what was your reaction when you received your diagnosis?

Relieved but not surprised. Good to have a diagnosis on paper. 

Mika’s cat, Pilsner-Uffe, not happy about his favorite sleeping space on Mika’s window ledge being taken over by potted plants. Photo courtesy of Mika’s Instagram @ibicubavitlamia.

6. Have you had good experiences with your healthcare providers? Why/why not?

Not really, some doctors are okay, but mostly they want to force me to take hormonal treatments even though I get suicidal and have stroke symptoms and other physical and psychological issues. It doesn't help my pain or anything.

7. What sorts of treatments were you originally offered after receiving a diagnosis? Did they help you?

I've tried almost all types of birth control pills, Mirena spiral, Enanton(Lupron) injections, Visanne treatments. 

8. What sort of treatments do you currently use?

None. Only pain medication, like naproxen, Alvedon, tramadol. When arriving to the ER I get morphine or oxycodone.

9. What's your go-to source for comfort?

Heat blanket and heat pad, pillows, my cat and dog, and my man. And pain meds. Trying to sleep as much as I can or watch funny series. 

10. Do you think tracking your health is important?

Absolutely yes! It has helped me when seeking medical help, when tracking my symptoms it's easier for me to not forget anything important, like irregular bleeding, pain scales, last period etc. 

11. Do you feel like you've received adequate support from your loved ones?

Yes, fortunately! My family and my man, and his family are very supportive and help me in every way I need. Also my colleagues and boss are very understanding. 

12. Is there additional support you wish you had?

I wish that Swedish healthcare was more up-to-date about endometriosis, and not hung up on how much you weigh, or try to force you to take hormonal treatments that your body doesn't answer to. 

A collage of different people wearing Mika’s hand-made silver necklaces and bracelets. Photo courtesy of her jewelry Instagram account @helvegen_jewelry.

13. What do you wish people were more aware of when it comes to endometriosis?

I wish people could understand that even though we are in pain, we are very good at hiding it, and when we stay at home, it is because we mostly can't physically get out of bed. We are not lazy, we are in severe pain. 

14. Do you have any advice for people who have suspected or confirmed endometriosis?

Seek medical help, and do not give up. And if your doctor isn't listening, ask for a new doctor!