Downtown | Film | Arts & Culture | Youth Arts Journalism Initiative
| A photograph from filming earlier this summer. Credit Inner U Diagnosed. |
When many women get Intrauterine Devices or IUDs, a small t-shaped object made of plastic or copper inserted into a woman's uterus as a form of birth control, they can experience a laundry list of side effects. According to filmmaker Kathryn Shasha, several of those happened to her. Now, she's trying to tell her personal story to a wider audience.
Shasha, who grew up in Connecticut and now lives in New York, is the director and producer of Inner U Diagnosed, an upcoming film on side effects that she believes are linked to IUDs. Earlier this summer, she spent time filming on the New Haven Green; she hopes to have the movie finished by next year.
According to Planned Parenthood, which has been a leader in Long-Acting Reversible Contraception for several years, IUDs are safe for most women, with both non-hormonal and hormonal options. They are also the most effective form of birth control available, with a 99 percent prevention rate. Unlike the pill, they are long-acting: there are hormonal options called the Mirena, Kyleena, Liletta, and Skyla that last for a year or more, and a non-hormonal, copper insert called the Paragard, that is good for up to 10 years. In addition to preventing pregnancy, several of the hormonal options have been used to curb heavy and painful menstrual bleeding.
The organization, like the U.S. Food and Drug Administration, warns patients that there are possible side effects, including pain and infection, and notes that women should consult with their physicians or healthcare providers before insertion.
For Shasha, that warning wasn't enough. In 2009, she had her own IUD implanted six weeks after giving birth to her daughter. In the years that followed, she experienced difficulty swallowing, numbness in hands and feet, heart palpitations, fatigue and daily vomiting. She gained weight and her vision blurred. Her body spasmed unexpectedly and she experienced convulsions.
After receiving multiple diagnoses—she mentioned multiple sclerosis and autoimmune disease among others in a recent interview—she said she felt like a “pincushion.” She amassed over $100,000 in medical bills, which she was able to cover only through having insurance. Then in 2011, she was rushed to the hospital during what she called a bad episode of convulsions.
According to Shasha, an emergency nurse asked if she ever considered her IUD to be the culprit of her symptoms. She said no—she had ruled it out after a practitioner suggested that it wouldn't have been the cause.
“I went home and searched for every other thing,” she recalled. “A can of worms opened up, I was like ‘Oh my God, I can’t believe it.'”
After finding several online support groups and forums for women who sought the same level of confirmation and help with the severity of their symptoms, Shasha returned to the emergency room and said she wouldn’t leave until staff removed it. She said her concerns for other women, daughters, sisters, and nieces are what motivated her to embark on a four-year filmmaking journey to tell that story.
She has spent the last four years researching IUDs and their side effects, she said in an interview earlier this summer on the New Haven Green. In her time working on the film, that has included submitting a Freedom Of Information Act (FOIA) request to the U.S. Food and Drug Administration, from which she said she received several sheets of paper that “made no sense” with numbers and no explanation.
With a recent push for more transparency from the FDA, Shasha is hoping to receive more clarity on the impact. She has also consulted with the FDA’s Adverse Event Reporting System (FAERS) Public Dashboard, which allows people to search reported side effects. A dashboard visitor can find, for example, that Mirena users—that's a hormonal IUD option—have reported 41,447 serious side effects including 137 deaths within the last two decades.
She was able to raise $10,231 through Seed and Spark, a film-centered crowdsourcing platform, for the production of the movie. Aside from practitioners and personal accounts, she said she wants the film to be a feature with both professional and non-professional actors, and both male and female actors as well.
‘“These actors are just beginning in their career if I can help them, and any potential IUD users, I will have accomplished my goal,” she said. She did not comment on any anti-IUD bias the film may have, but is not including the fact that Long-Acting Reversible Contraception (LARC) has also helped millions of women curb periods and prevent unwanted pregnancies annually.
Earlier this summer, Shasha and a mix of volunteers and professional actors came together to film one short scene on the New Haven Green. At least 15 people stood together holding poster boards with different side effects of an IUD on each.
On each side, reporters and cameraman working for Shasha, stopped pedestrians to interview them about IUDs and what they knew about them. Along with their questions, they gave them more information on the object and a sign-off form, agreeing to be in the film. In a follow-up interview, she declined to comment on the source of that information.
Shasha aims to wrap the movie up by February of 2020 and hopes to get the film onto Netflix to reach a wider audience. Melanie Espinal contributed reporting.
This piece comes to the Arts Paper through the second annual Youth Arts Journalism Initiative (YAJI), a program of the Arts Council of Greater New Haven and the New Haven Free Public Library. From April through June, ten New Haven Public Schools (NHPS) students work with Arts Paper Editor Lucy Gellman and YAJI Program AssistantMelanie Espinal to produce four articles, for each of which they are compensated. Read more about the program here or by checking out the"YAJI" tag.