The bed-bounding aches, unexplained pains, even abnormal periods are sensations 41-year-old Aimee Hess is all too familiar with having endometriosis. She has struggled with it since she was 11 years old, but was not diagnosed until the age of 35.
“No one ever paid attention to me when I said how bad it really was,” Hess says.
An average menstrual period can last from two to seven days, and women should only be losing one to six tablespoons of menstrual fluid each period, according to Planned Parenthood. This means that if women are bleeding through a pad or tampon every hour, that is not considered normal.
“I had really bad periods my whole life," Hess says. "In school I would bleed through a tampon and a pad every 30 minutes.”
Once women reach the age of 21, they are required to get yearly vaginal exams to screen for cervical cancer or other underlying problems. This is known by its medical name: a PAP Smear. Hess showed no signs of endometriosis when she would have her yearly PAP Smear exams.
Her chronic pain began to escalate as she got older. At the age of 35, she saw a new doctor and, after doing an ultrasound, they discovered a softball-sized cyst on her ovary. It took a month to schedule the one-hour surgery that would hopefully reduce her pain. Her doctor went in surgically to remove what they thought was a cyst and to perform a tubal ligation, which is the severing and tying of the fallopian tubes, which allow eggs to travel from the ovaries to the uterus.
But instead of a cyst, her pain was originating from her fallopian tubes. One of her tubes was damaged and glued to her pelvis. It was full of scar tissue and blood, and her doctor had to do an emergency surgery to cauterize it before it led to her fallopian tube exploding and possibly killing her. She says this was caused by her endometriosis, which had been growing for years undiagnosed.
“It wasn’t until after my surgery that I was told I had bad endometriosis,” Hess says.
Endometriosis is a painful medical disorder resulting from the appearance of endometrial tissue outside of the uterus. Endometrial tissue typically grows inside the uterus to prepare the lining for ovulation, but when it grows outside then it leads to endometriosis. This disorder affects one out of every 10 women between the ages of 15 to 49.
It is considered an invisible illness because it is shown internally rather than externally. It can cause issues such as abdominal pain, pelvic and vaginal pain, abnormal periods, ovarian cysts and even infertility. Because some women have painful periods, endometriosis can be difficult to diagnose. The only way to accurately diagnose endometriosis is through a laparoscopic procedure, an invasive surgery where a doctor looks inside the abdomen and searches for endometrial tissue that is outside of the uterus.
Hess recalls after her surgery the anger and relief she had once discovering what was causing her chronic pain.
“I remember waking up in the first stage of recovery, and I was shaking uncontrollably.” She looked at the clock. “It’s way later than I thought it was going to be.” Her surgery was scheduled to take 45 minutes to one hour but instead it lasted for two hours. The nurses were supposed to call her cousin when she was done with surgery.
“She never heard from the hospital, so she came looking for me. She finally found me, and by then I was angry and I said, ‘I want to go home.’” The nurse told Hess she could go home if she could get up and walk to go to the bathroom. “I’m walking to the bathroom. I don’t care if it kills me. I want to go home. I ended up popping a stitch in my belly button,” she says.
When she got home she noticed there was gauze incision tape above her bikini line. “Is that why it hurts so bad? There was a huge incision,” Hess says.
No one in the hospital knew the surgery that had been performed on her, because her doctor didn’t tell anyone. Looking for answers, she called her doctor, the Salem, Oregon hospital and every nurse she could. Every person she talked to could not give her an answer.
“On Monday was when I figured out what had happened.” Hess went three full days not knowing what had happened in the operating room until her doctor called her at 7 p.m. on a Monday night.
“I was pissed.” she says. “I had asked my doctor before the surgery, ‘What if it’s worse than what you think it is?’”
Her doctor told her that they would take care of it at the moment. “Part of me knew there had to be something like that, but part of me was happy that I finally had a doctor who listened to me,” Hess says. “But I was also so angry that I had to go that long before I knew.”
In a 2001 study titled “The Girl Who Cried Pain,” researchers Diane E. Hoffman and Anita J. Tarzian wrote, “Women are not accurate reporters of their pain; men are more stoic so that when they do complain of pain, 'it's real;' and women are better able to tolerate pain or have better coping skills than men.”
But for 24-year-old Taylor Jones, her experiences show the opposite. She began showing signs of endometriosis at the age of 12, but for the longest time no one would believe her pain. She had to miss school all the time because of how debilitating her pain would become.
“Almost every professional I have seen has told me my pain isn’t real or that it’s just a period," she says. "I used to be so outgoing and fearless, and now that my endometriosis has progressed, I am terrified of doing anything that could possibly trigger the pain.”
According to Dr. Kelly Wright, an assistant professor of obstetrics and gynecology at Cedars Sinai, there is no cure for women with endometriosis, but there are treatment methods to help reduce pain.
“To reduce inflammation and prevent endometrial tissue from becoming stimulated and inflamed, many patients use hormonal birth control. Successful treatments include birth control pills, hormonal IUDs, a hormonal implant or a shot,” Wright says.
Another form of treatment that is common is pelvic floor physical therapy, which helps relax and strengthen the pelvic muscles.
Dr. Amanda Olson is a pelvic physical therapy specialist, and has been practicing for 11 years. Twenty-five percent of her patients suffer from endometriosis, and she has created devices that allow her patients to self-treat their pain.
“People with endometriosis historically have pain, and oftentimes they are clenching and the muscles are really tight. The muscles are not able to relax,” Olson says. She has created pelvic wands and dilators through her business, Intimate Rose, and the results from these have helped women to improve their pain.
Not only does endometriosis affect physical health, but it also affects mental health. According to EndoNews, an endometriosis awareness website operated by the Endometriosis Foundation of America, “Women who suffer from endometriosis report high levels of anxiety and depression and other psychological disorders.”
This is often due to the amount of pain, stress and impactful life changes that come with having endometriosis.
At 26 years old, Hayley Boss has had endometriosis for 15 years, and endured many significant life changes because of it. She had to have three years of hormone treatments before she was finally able to conceive and have children, during which she experienced manic episodes of anger and depression. Endometriosis.org, a platform that links the newest information about endometriosis, says that between 30% to 40% of women with endometriosis are subfertile, meaning they can take longer to conceive children.
“Because endometriosis affected my ability to have kids, that definitely caused severe depression and anxiety,” Boss says. “I would go from zero to a volcano on a dime. My husband would sneeze wrong and I would snap."
She says that her three years of hormone treatment were difficult and did not result in helping her to conceive children. Boss now has two children.
Despite being a well-known condition, Hess says she does not think there will be a cure for endometriosis, at least not in her lifetime. “You’re not dying from it but that doesn’t mean that it’s not there.” Hess says.
Endometriosis comes in different colors and sizes, and women who suffer from it just want to be heard. That their pain is real, and should not be pushed to the side.
“It’s known that many surgeons that say they’re doing endometriosis surgery were not able to properly identify endometriosis when shown it on a slide,” Olson says. “Endometrial tissue can be different colors.”
“My whole life I felt like there was more wrong than what anyone else thought,” Hess says.