Does It Hurt to Have Endometriosis? In a Word, Yes
Key takeaways:
Endometriosis is a medical condition where tissue that lines the inside of the uterus (endometrium) begins to grow outside the uterus.
Endometriosis can cause pelvic pain, intense menstrual cramps, and painful intercourse.
Here’s how three women describe the pain of endometriosis.
About 1 in 10 women between the ages of 15 and 44 have endometriosis. But there’s much we don’t know about this often painful condition that can’t be prevented and has no cure.
Endometriosis is an inflammatory condition where endometrium (the tissue that lines the inside of the uterus) grows outside of the uterus. The tissue can become swollen and inflamed, usually in response to hormone changes during the menstrual cycle. Sometimes, inflammation can lead to adhesions and scarring around other organs.
The most common symptoms of endometriosis are:
Extremely painful menstrual cycles
Chronic lower back and pelvis pain
Pain during and after sex
Endometriosis can also cause gut symptoms and affect fertility. Treatment options include medication and surgery in severe cases.
Three women talked to GoodRx about their experiences with endometriosis. All three mentioned the website Nancy’s Nook. They said it’s a good resource for people with endometriosis.
Growing up in a Latin family, she was reluctant to complain
For almost 20 years, New Yorker Nathali Zamora lived with an extreme, sometimes debilitating pain in her groin area. She likens it to someone pouring salt and lime juice into an open wound.
“It was so intense I could feel a pulse in my pelvis area go throughout my body,” says Nathali, now 35 and working in finance.
She would curl into a ball and take ibuprofen throughout the day. “It didn’t relieve the pain, but it took the edge off enough that I could get through the day.”
The pain got worse during her week-long menstrual cycles. They were so heavy that she often worried about bleeding through her clothes.
The only thing that helped was sitting in a steaming hot bath. Sometimes, her sister would bring freshly boiled water to add to the tub. Other times, Nathali would hold bags of water — as hot as she could stand — on her abdomen when regular heating pads didn’t do enough.
She says her mother assumed the bad cramps were normal. “You’re just one of those people with bad period pain," Nathali remembers her saying.
Nathali didn’t ask to go to a gynecologist. She feared her mother would assume she was sexually active, which was taboo in her conservative family.
She didn’t seek medical care until she was in her 20s and no longer living at home. She went to multiple doctors, including gynecologists. None of them even considered endometriosis as a diagnosis.
Once, Nathali remembers, she asked a physician if she could have endometriosis. She had learned about it online.
“She rolled her eyes at me. ‘Don’t Dr. Google me. You don’t have that. You’re too young for that. You just have bad periods,’” Nathali recalls her doctor saying. “There was something inside of me and no one listened. I did everything I was supposed to do, and they didn’t believe me.”
But Nathali persisted. Finally, in 2010, a doctor performed laparoscopic surgery and confirmed she had endometriosis. Nathali lived with the pain for 9 more years until in 2019, an endometriosis specialist reviewed her medical history and suggested she have excision surgery. During the operation, he found lesions that had grown on top of other lesions throughout her pelvic area and even attached to an ovary. He also removed the fibroid-like tissue.
Nathali has had no endometriosis pain since.
She’s now an endometriosis advocate. She provides educational resources in English and Spanish on her Instagram page. And she recently shared her experiences at the annual Endometriosis Summit for the launch of Endometriosis Summit Espanol.
The women she most often connects with have backgrounds similar to hers. They are Latinas who are the first in their families to attend college and are reluctant to complain.
“I never thought that I could be here,” she says. “If you would have told depressed, suicidal Nathali at 25 that, at 35, this is what she would be doing, she would never have believed you.”
What are the different types of endometriosis surgery? The main ones are a hysterectomy or laparoscopy.
What’s it like to have a hysterectomy? Here’s how one woman describes it.
What does endometriosis feel like? From “stabbing pain” to “an atom bomb,” here’s how women describe the condition.
Women’s health nurse felt ignored about her endometriosis pain
When Suzie Devine was in high school, the heavy cramping and bleeding that hit her monthly during her period “would knock me out. One time, after a sleepover, my dad had to come pick me up because I was literally writhing in pain,” recalls Suzie, now 35, of Bryn Mawr, Pennsylvania.
![“[Endometriosis pain is] burning cramping where it feels like my uterus is tingly and on fire.” — Suzie Devine](http://www.grxstatic.com/4f3rgqwzdznj/6qMqXTNm7gLXsPBFEmElGV/f840b9a1852ce2a5d94647151772e45f/patient_stories_feel_endometriosis_quote_2.png?format=png&auto=webp&width=704)
Her doctor prescribed birth control pills to regulate her cycles and reduce the pain. They lessened the monthly pain, but they didn’t erase the ”burning cramping where it feels like my uterus is tingly and on fire,” she says.
Still, Suzie learned to live with the pain, becoming a woman’s health nurse and getting married. In 2019, she and her husband decided to start a family.
But she couldn’t get pregnant, even though tests showed neither she nor her husband had any conditions that would prevent conception. Frustrated, Suzie visited a reproductive endocrinologist, who thought the problem might be endometriosis.
Suzie was shocked: No one had ever suggested endometriosis, or that the pain she’d endured for years was “abnormal.” When she told doctors about the issue in high school, they were quick to prescribe birth control pills and then move on.
While laparoscopic evaluations are much more common now, it wasn’t an easy option when Suzie was trying to figure out what was wrong.
“There’s a lot of medical gaslighting, especially in the Black community. I got lucky in finding a reproductive endocrinologist who understands the symptoms and can at least sympathize with what I’m going through so I don’t feel crazy,” says Suzie, now CEO of a company that provides women with customized vitamin and supplement plans. “As women, we need to fight for this,” she says.
But looking back, she saw signs that endometriosis had always been there.
First, the painful periods. Then the monthly bloating that distended her stomach, a condition known as “endo belly.”
Sex was often uncomfortable, but Suzie just assumed that was her normal. She didn’t know she had a condition known as dyspareunia, or pain with sex. The Endometriosis Foundation of America describes it as deep pain that “comes from the inflammation and fibrosis fusing the front wall of the rectum to the back wall of the vagina.”
Suzie decided to start her family before fully addressing the endometriosis. She turned to in vitro fertilization (IVF). After multiple attempts, she became pregnant with son Pearse, now 2. While still breastfeeding him, she became pregnant without IVF assistance. She welcomed son Austin in January 2024.
Suzie doesn’t currently have endometriosis-related pain. But she thinks it will return when she stops breastfeeding her younger son. Her goal for 2024: To find a doctor trained in excision surgery to see if that’s the right next step. She has already been looking at icarebetter, a website that lists endometriosis specialists and experts.
Until she takes the next step, she says, “I focus on things that I can do: mental health, diet, supplements, and staying active.”
Endometriosis explained her trouble conceiving
Georgie Kovacs, now 50, didn’t have crippling pain around her period or other common signs of endometriosis. She only learned she had the condition about 10 years ago when she had trouble conceiving.
“I spent 4 years trying to get pregnant, going from doctor to doctor, being told I had unexplained infertility. It was the tenth doctor who believed I had endometriosis,” says Georgie, of Irvington, New York and host of Fempower Health, a women’s health podcast that has multiple episodes on endometriosis.
The best way to confirm suspected endometriosis, then and now, is laparoscopic surgery. Georgie had already spent thousands on fertility treatments. But she decided to have the procedure because “I needed to have something certain,” she says.
That’s how she got her diagnosis. Georgie had “silent endometriosis.” It’s a form of endometriosis that can be present in people who do not have the typical symptoms associated with the condition.
A surgeon removed her endometriosis tissue, saying Georgie could try to conceive naturally. She still used IVF to get pregnant with her now 8-year-old son, Connor.
The experience led Georgie to become an advocate for endometriosis awareness.
“Women with pelvic pain are dismissed in crazy ways. ‘Oh, you’re just anxious.’ It’s not investigated enough. The average time [to get a] diagnosis is 7 years,” she says. “If you’re struggling with unexplained fertility, consider being tested for endometriosis, and don’t assume it doesn’t exist because it doesn’t show up on an ultrasound.”
Georgie tells women with endometriosis-like pain to monitor it carefully. When presenting your findings to a physician, “you have to be crystal clear in describing the symptoms. Know how to talk about what’s happening,” she says. “Schedule a specific pelvic exam to talk about your pain. Don’t make that conversation part of your annual exam.”
She also urges women to reach out to members of the endometriosis community. She calls them “the most powerful advocacy group I've ever seen.”
“If your doctor is dismissing [your symptoms] or just wants to give you a prescription for a quick fix, question it, or at least know your options,” Georgie advises. “If you opt for surgery, make sure you ask your surgeon how many endo excisions they’ve done before and if they have experts to consult if the endometriosis has grown to other parts of your body.”
Frequently asked questions
Endometriosis pain is often described as a sharp, stabbing sensation that can be debilitating. It may feel like intense cramping, deep pelvic pressure, or shooting pains that worsen during menstruation.
Other conditions that can mimic endometriosis pain include adenomyosis and fibroids.
Differentiating between endometriosis and painful periods can be challenging. Key indicators of endometriosis include pain during intercourse and heavy menstrual bleeding. If period pain interferes with your daily life, talk to your doctor or healthcare team.
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