What Is Endometriosis, And Why Aren’t We Talking More About It?

Self

Oct 24

Women’s bodies are incredible—and incredibly complicated.

A woman’s body may endure a tremendous amount of pain, stress, and transformation in her lifetime. Month, after a month, we get back on the hormone battlefield, often accepting the discomfort and pain with every new cycle without further investigation. Many of us learn to soothe our bodies without knowing when things are not “normal,” and we simply endure.

“We learn to soothe our bodies without knowing when things are not “normal,” and we simply endure.”

However, what if the pain becomes too much and keeps us from doing our day-to-day activities? What if our bodies feel as though they are fighting against us? For some women, this pain is diagnosed as one symptom of a chronic condition called endometriosis. We consulted Dr. Kate White, M.D., M.H.P., and the Vice-Chair of Academics in the OB/GYN department at Boston Medical Center for further information. Endometriosis is a condition “where tissue that is similar to the lining (inside the cavity) of your uterus, grows outside the uterus,” she explains. “This tissue can grow anywhere in your pelvis, including on the walls of the fallopian tubes, or even throughout your abdomen.”

“Endometriosis affects 10 to 15 percent of reproductive-age women.”

Studies show that endometriosis affects 10 to 15 percent of “reproductive-age women.” Unfortunately, it is still hard for women to be diagnosed, so more women could be living with the condition without a diagnosis.

For women struggling to find a doctor to take their pain seriously, Dr. White encourages them to seek out further medical opinions. “If you feel like you’re getting the brush-off from your gyno, don’t hesitate to find another,” she says. “And if you live near a city, there are often endometriosis specialists at the university or large hospitals who may be able to help.”

“If you feel like you’re getting the brush-off from your gyno, don’t hesitate to find another.”

Severe pain is one of the first symptoms of endometriosis. “It may start as severe menstrual cramps, but can eventually worsen to cause pelvic pain at any time in your cycle,” Dr. White explains. “Other common symptoms are having pain with sexual intercourse and even painful bowel movements. Some women with endometriosis may have difficulty getting pregnant. One of the strange things about endometriosis is that a woman may have few to no symptoms at all, and the condition may be discovered at the time of another procedure, or during a work-up for infertility.”

As of now, endometriosis cannot be cured, however Dr. White shares advice for treatment options:

“A woman may have few to no symptoms at all; [endometriosis] may be discovered at the time of another procedure, or during a work-up for infertility.”

— Dr. Kate White

“Endometriosis is usually first treated with a combination of two medications: hormonal contraception and an anti-inflammatory medication like ibuprofen or naproxen. Hormonal birth control can stop you from ovulating, and stops the hormonal stimulation of the tissue implants outside your uterus. The hormonal I.U.D. is also very effective at controlling severe period cramps for women with endometriosis.”

But those approaches don’t always work for women, and there are further solutions—like surgery. Dr. White explains, “doctors can perform a procedure called laparoscopy, where several small incisions are made on your abdomen. The surgeon will insert a camera into your belly button and place other instruments inside to look for endometriosis lesions or ovarian cysts. These implants can then be excised or burned off, and cysts can be removed.”

Awareness Through Art

If you’re struggling with endometriosis, you’re not alone. We are inspired by artists who tell their stories of the condition through their mediums.

This video by filmmaker Sindha Agha offers a vivid depiction of the pain, while a woman describes the challenges she faced when communicating with medical professionals. It’s not until she explains she is unable to get pregnant that her doctor decides to move forward with the procedure to accurately diagnose her with endometriosis.

For another visual depiction, jess draws lines is a graphic artist sharing about her endometriosis with her online community. Through writing and artwork, she describes her journey in managing the pain and offers helpful advice for others.

Our Readers Share Their Stories

We asked our readers who are living with endometriosis to share their experiences, as well as treatments they’ve found to ease their pain. Turning to the community of other women who experience the condition can offer a sense of clarity and solidarity.

“I switched from pill to pill, trying to find something that worked for years. Every doctor had another prescription that never worked or only worked for a few months. Finally, I got an I.U.D., and it helped a lot. I haven’t gotten my period in a year, and the pain I feel now is way less than what had been. I recommend it to anyone suffering through endometriosis.”

- Kaylee

“When my doctor diagnosed me (my first ever gynecologist appointment), I also had a cyst on one of my ovaries. My doctor recommended surgery to get it out and hormonal contraception afterward. I was reluctant to take the pill, but my doctor explicitly told me that even though it wasn’t proven that the pill could solve my endometriosis, studies had shown a 60 percent decrease in this type of case. I have been using the pill ever since the surgery.”

- Patricia

“It started when I was experiencing horrible cramps that I thought were normal. After going on the pill didn’t help with the cramps, I looked for another solution. I got an abdominal x-ray, which showed an ovarian cyst. I went to a pediatric gynecology specialist for the surgery, and he also suspected that, based on my symptoms, I had endometriosis, which was causing all the pain. So at 16, I had surgery to remove the cyst and laparoscopic surgery to laser off the endometriosis growths. I had it all over my bladder, pelvic wall, intestines, and more. After the surgery, my doctor recommended going on the pill continuously, so I never get my period. This treatment doesn’t work for everyone with endometriosis, but it removed a burden and so much pain from my life.”

- Anna

“I thought I had endometriosis—all my symptoms pointed in that direction. I’d have to take days off school, stop playing sports, or just suck up the pain/get over it. I had three specialists tell me it was just normal. I had an ovarian cyst removed at 16, and my pain was supposed to disappear. Five years went by, and it turned out I had adenomyosis, which is scar tissue inside the lining of the uterus. To completely get rid of it, you get rid of the uterus. Or use birth control. The Mirena seemed the most appropriate with the “least amount” of side effects. But they still occur, and, as a woman, it’s either accepting them or living with excruciating pain. So now it’s artificial hormones or natural pain. Womanhood at its absolute finest.”

- Selena

“My doctor told me that if I hadn’t had the endometriosis discovered when I did, I would have hit Stage 4 in a couple more months. So I was classified as a severe case since I was right on the verge of Stage 4. I first tried all-natural ways to help my cysts and endometriosis. I ate organic, took natural supplements, etc. However, that didn’t help me at all. Eight weeks to the day after my surgery, I found out my cysts and endometriosis had returned. I then tried the medication called Orilissa. However, I had bad reactions to it, so I had to stop it. Since I tried everything under the sun that I could, there was only one treatment option left. Next month, I undergo a total hysterectomy to end my endometriosis and huge cysts for good. Both cause me continual pain and have sent me to the E.R. on different occasions. I am 23 years old.

This is something that I strongly believe needs to be discussed more. Women need to speak up and talk about Endometriosis, ovarian cysts, etc. We must stand together and fight for better solutions, in-depth research, etc. While I know it can be a sensitive topic, we must be brave and speak out in order to help others and let women know they are not alone. This is something that can feel very isolating. There is power and strength in numbers.”

- Sylvie

As we continue to move into an age of greater transparency and accountability within women’s health, we can be further emboldened to stand up against our pain and find impactful treatment options. Dr. White is a wonderful resource if you have more questions or concerns about endometriosis—you can reach out to her using her online form. Also please feel free to share your experiences and any tips for treatment that has been helpful, and know that you are not alone!