For several days each month, Kathryn McConnell is in "unbearable" pain, unable to do any work or other activity.
Despite significant pain medication, during those days she can't focus on her work at the national office of Planned Parenthood or operate her independent theatre company, Squeaky Bicycle Productions, in New York City.
"All I can do is breathe," McConnell, 37, told TODAY. "...This takes so much of my energy, emotional and physical energy, that I don't have any left for the things that I love."
McConnell lives with both endometriosis and adenomyosis, two chronic disorders that affect the reproductive system. Endometriosis is a condition that develops when cells that are supposed to remain in the uterus, instead, grow outside the organ; adenomyosis occurs when those same cells have "embedded themselves" into the inner lining of the uterus, causing what McConnell says is "absolutely unbearable pain."
"The diagnosis has affected just everything," McConnell said. "... I do everything I can to sort of just suck it up, grit my teeth through it ... Where I used to be able to go from one work day to the next, you know, do my eight hours at the office and then go to rehearsal, it just sort of feels impossible."
Both disorders are common: It's estimated that endometriosis affects 11% of women between the ages of 15 and 44, and adenomyosis is estimated to affect between 20% and 65% of women, typically between the ages of 35 and 50. However, not all cases involve symptoms, so many women are unaware they even have the disorder, according to the Cleveland Clinic.
"Kate has a lot of muscle pain," explained Dr. Jennifer Zocca, a pain medicine physician who operates in New York City and is one of McConnell's primary doctors. "She has specifically a lot of neck and shoulder (and) low back pain, and then she also has a lot of lower pelvic pain and cramping and so she has a lot of different areas that are bothering her."
McConnell said that the multiple conditions affected her daily life for about 15 years, but the pain has been "unbearable" for the past "seven or eight" years. She frequently suffers from "pain flares" where she is in severe pain for several days at a time.
"I use the word flare ... because my body might as well just be on fire," McConnell said. "The pain is so extreme. It maxes out for a couple days, at like a 9 or a 9.5 out of 10. And the pain is like something is squeezing at my internal organs so hard that they're going to pop or like something is trying to scrape its way out of me. I can't think about anything else. The pain is so intense. All I can think about it is stopping it."
Typically, those flares happened around her period, and meant that she needed to take even more pain medication compared to what she was prescribed for day-to-day life.
"During the pain flare itself, I am on so much pain medication that I'm a little out of it," McConnell explained. "I mean, honestly, I am a little bit high, and I just have to keep working. ... And that adds up to about two weeks every month. And then you know, there will be some cramps and pain here and there throughout the rest of the month. It also is incredibly exhausting."
Over the years, McConnell has tried a number of treatments, including two surgeries and prescription medication, to relieve the pain from the dual conditions. One surgery, in 2018, went well and McConnell experienced less pain for about a year.
In November, she and her doctors decided that the best solution would be to undergo a hysterectomy (an operation to remove the uterus) after her pain returned.
"Ultimately, Kate decided to have a hysterectomy, despite having very good pain control for some period of time after her first surgery, as her pain began to return, and as she finalized her desire to not have future childbearing as an option," said Dr. Janette Davison, a New York City-based gynecologist who is one of McConnell's doctors and specializes in chronic pelvic pain and minimally invasive gynecologic surgery.
Davidson explained to TODAY that in McConnell's case, the uterus, cervix and fallopian tubes were all removed, but not her ovaries: While the ovaries serve no reproductive purpose without the other organs, they are an essential part of hormonal function.
"In women who are pre-menopausal, we almost always opt to retain both ovaries if possible to avoid some of those adverse side effects," Davison said; side effects include negative impacts on bone and heart health. "... Retaining the ovaries still has very, very low reoperation rates."
McConnell underwent the operation in November, and said that while she felt some anxiety leading up to the hysterectomy, she was mostly "relieved and excited."
"I think the right word is relief," McConnell said. "We were there, and I trust Dr. Davison with my life, literally. ... Regardless of what anxiety was there leading up, it felt like 'I'm here, it's going to happen, Dr. Davison is an expert, and my life is about to change.'"
While the surgery was only a month ago and McConnell is still recovering and facing some day-to-day difficulties, she said that everything has changed since the operation was completed.
"It feels like the world has opened up in front of me," she said. "I feel, already, even though I'm still healing, like I have the energy to do so many things I've been putting off. I feel like my work is going to be able to just improve and grow, and I'll be able to spend the time on it that I've been wanting to for so long. I'm thinking of moving. I just see this path forward."