DES MOINES, Iowa — One in ten women is living with endometriosis, a condition where the lining in the uterus grows outside of it. It’s painful, there’s no cure for it, and finding specialized treatment in Iowa is hard.
Ankeny mom, Anna Moon, had to drive two hours to Omaha for a specialized endometriosis surgery called excision. The procedure removes the lining from the unwanted areas by laser and is considered to be one of the most effective ways to rid the endometriosis compared to other surgeries like hysterectomy.
“I was in such pain. I just wanted to be healthy,” says Moon.
The 30-year-old estimates she lived in constant abdominal pain for a decade. Doctors speculated she had endometriosis but a diagnosis can only be made during surgery when endometriosis can be detected.
“I always had bad cramps. That was always a thing, but it was just a couple days out of the month. After I had my daughter it was like it reared its ugly head,” she describes. “It was not just a few days out of the month, it was every single day of the month. There would maybe be one or two days I would be feeling good.”
Before settling in Omaha for surgery, she looked all across Iowa for treatment options but found no one. There are no doctors in Iowa who specialize in endometriosis treatment. A Facebook support page helped recommended out-of-state providers. Kate Howe is the founder of Endo DSM, a Facebook group she launched to raise awareness and advocate to bring specialized care within Iowa’s borders.
“It is crazy. You can go to Mayo Clinic, there is a doctor in Omaha and St. Louis,” says Howe. “A lot of people traveling for care I think is normal, but when you are traveling in chronic pain, that can be incredibly hard. Traveling with anxiety caused by chronic pain is hard.”
Howe called on the help of Congress for answers to the common problem so many women face. Congresswoman Abby Finkenauer formed a special caucus earlier this year to help increase endometriosis funding from the National Health Institute, one of the conditions that receive the least amount of funding.
“When I started talking about it in Congress and having conversations with my colleagues, it was amazing to see the congressmen talking about their wives who have it or talking about their friends who have it. It has been easy to build the coalition because so many people are affected.”
The congresswoman’s effort boosted funding from $13 million to $26 million. It’s still sorely underfunded compared to diseases like the breast and prostate cancer, but it’s a step in the right direction.
“Realizing that seven million people have this, we had to do everything we could to up funding. That’s how cures happen. That’s how treatment happens,” says Finkenauer.
The momentum now shifts to speaking with physicians and insurance companies to break down the barriers of access to care.
For women like Moon, she hopes other women recognize they don’t have to live in pain and that access should someday be found closer to home.
“Congresswoman Finkenauer really gave me some solid hope and I hope through her speaking out she inspires doctors to get more training and find some more knowledge in general. Finding out all we can about this is going to help so many people,” she says.