- Endometriosis is an incurable, often painful disease in which tissue like the lining of the uterus grows outside the uterus.
- Endometriosis symptoms vary from person to person, but some common symptoms include abdominal pain, painful sex, irregular periods, and infertility.
- Although endometriosis is incurable, there are ways to reduce the pain, including birth control and avoiding your individual endometriosis triggers.
- Check out Insider’s Insider Reference Library for more advice.
Endometriosis (also known as “endo”) is an individualized, incurable, and often painful condition in which tissue similar to the lining of the uterus grows outside the uterus. This disease affects an estimated 200 million people worldwide, including me.
Symptoms of endometriosis and how to deal with the pain
Although endometriosis typically occurs in reproductive organs in the pelvis or abdominal cavity, it can grow anywhere, including the large and small intestines, rectum, appendix, diaphragm, and lungs. In fact, endometriosis has been found in every organ and anatomical structure of the body except the spleen.
In this article, I’ll describe what it’s like to live with endometriosis, list the warning signs of a possible endometriosis diagnosis, and share tips on how to stand up for yourself if you think you have endometriosis. In addition to my own story, other women living with endometriosis have boldly shared their experiences with endometriosis.
How does endometriosis pain feel?
Endometriosis affects everyone differently. It is also what I like to refer to as a “whole body” disease. This is because endometriosis has the potential to affect every aspect of your life, including your social life, intimate relationships, and your career.
Patient perspective: “Instead of going out and being in contact with friends, I often find myself in a fetal position with a heating pad on my stomach.” -Kaitlyn Ireson
“Endometriosis pain can be felt throughout your period or throughout the month – cyclical versus non-cyclical pain,” says Heather Jeffcoat, DPT, owner of Femina Physiotherapy and author of “Sex Without Pain: A Guide to Self-Treatment for Sex Life That You have “Earn.”
Patient perspective: “Some months hurt worse than others. Sometimes I think that the worst of my symptoms are gone, then I spend the weekend on a heating pad.” -Caroline Macon
Endometriosis shows different types of pain at different times. For example, I am prone to sciatica endometriosis pain late at night. When this happens I can feel a deep, intense pain in my left leg.
Sometimes I also feel a burning sensation in my urethra. This is because I have interstitial cystitis (IC), an incurable bladder disease that causes bladder pain and pressure in addition to urinary tract symptoms. Shortly before my official endometriosis diagnosis, I was diagnosed with IC. Whenever I experience an “endo flare-up”, my IC reacts too.
“There are many chronic, overlapping pain conditions with endometriosis. Therefore, it is not uncommon for women to also experience lower back pain, hips, burning off the thighs, bladder pain (IC), vulvar pain (vulvodynia), and rectal pain, neck pain. and jaw pain, “says Jeffcoat. “Painful intercourse is also very common. Interstitial cystitis, vulvodynia, and endometriosis come together so often that they are often referred to as ‘bad triplets’.”
Endometriosis can cause pain:
“In severe cases, dysmenorrhea [painful periods] or pelvic pain can be debilitating, “says Dr. Barry Witt, director of WINFertility and Greenwich Fertility and IVF Center.” Menstrual periods can be very painful and lead to absenteeism. Some women need or have multiple surgeries to keep the pain under control. “
Patient perspective: “Endometriosis feels physically like a knife ripping through the lower half of my torso and emotionally like the best worst club I’ve ever been to.” -Emily Thorpe
Common symptoms of endometriosis are:
- Bloating (endo-belly)
- Periods of pain (dysmenorrhea)
- Irregular periods or spots between cycles
- Painful intercourse
- Pain when passing stool or urinating
- Profuse bleeding
- Chronic fatigue
- GI problems
The final result? Endometriosis pain is felt everywhere. Living with endometriosis is like a mental, emotional, and physical roller coaster ride. This is especially true for people dealing with endometriosis-related infertility.
What Causes Endometriosis Pain?
Because endometriosis is individualized, each person has their own “triggers”. These triggers cause what the endo community calls “endo flare-up”. When I eat inflammatory foods like red meat, dairy, loads of gluten, have sex, or am overly stressed, I get a flare-up.
“A better question would be what doesn’t cause endometriosis pain,” says Stephanie Lipnicki, DACM, LAc, who has Stage IV endometriosis and is based at the Natural Alternatives Center for Wellness in Allentown, NJ. “Foods that are more inflammatory, too much sugar, hormonal imbalances, too high estrogen, too low estrogen, and low progesterone levels.”
Endometriosis is especially frustrating because almost anything from certain lifestyle choices (including your diet and stress levels) to intimacy can trigger it. The best way to narrow down what is triggering your endo is to keep a pain journal. Use this option to track when you are in pain and when you are not. List the foods you ate that day, whether you were intimate or on your menstrual cycle. This way, you have a record that you and your doctor can analyze together.
How do I know if I have endometriosis?
The gold standard for diagnosing endometriosis is laparoscopic surgery. A laparoscopy allows your doctor to look at your internal organs and remove any visible implants or scar tissue.
“The gold standard for endometriosis diagnosis is laparoscopic surgery,” says Jeffcoat. “However, a thorough physical exam by an endometriosis expert can indicate a high likelihood of endometriosis.”
Although endometriosis is characterized by pain, some people may not feel any pain at all – sometimes called “silent endometriosis”. In other cases, infertility can also cause someone to find out that they have endometriosis. Because endometriosis symptoms are different for everyone, it is important to listen to your body.
Patient perspective: “For me, it’s nausea, cramps, and an agitated scratchy feeling inside. The discomfort and fatigue can make it difficult to do normal daily activities like work and running errands.” -Caroline Macon
“If you suspect you might have endometriosis, go after everything,” says Lipnicki. “Even if you’re not sure whether a symptom is related to a possible endometriosis. In relation to the specifics, emphasize the stabbing, work-related pain.”
How Do I Explain Endometriosis Pain to a Doctor?
The first way you can explain endometriosis to your doctor is to be open and honest about everything that happens to your body. If he or she isn’t listening, find a new doctor. It took 14 years and seven different specialists to finally find a doctor who not only listened to me but believed me.
Despite the fact that one in ten people worldwide has endometriosis, the average endometriosis diagnosis takes six to eleven years. Years of misdiagnosis and nonchalant doctors can damage your sanity. For a short while, I actually thought that the pain I was feeling was all in my head. This is why it is so important to listen to your body and stand up for yourself.
“Patients need to stand up for themselves, especially when they have multiple sources of pain,” says Jeffcoat. “Endometriosis excisional surgery is known to completely eliminate endometriosis in the area. However, if the pain occurs elsewhere, patients will need an interdisciplinary team of specialists working together to treat the other areas of pain.”
Insider to take away
Endometriosis pain can vary from day to day and can be felt in different ways depending on the person. While some may experience pain around the clock, others may only be in pain during their menstrual cycle (or not at all!).
Living with endometriosis requires self-advocacy, an endometriosis specialist, and a pain management plan. If you suspect you have endometriosis, seek medical diagnosis. There are also support forums such as the Endometriosis Resource Center that can provide community assistance.
Patient perspective: “I wouldn’t choose, but I am and I am so grateful for the amazing community of people who understand and uplift each other and try to help each other the best they can. They make me.” feel less isolated and sometimes that makes all the difference. “ -Emily Thorpe