What endometriosis feels like: First-person accounts from people who live with and manage the condition
- Endometriosis is an incurable, often painful, condition where the tissue similar to the lining of the uterus grows outside of the uterus.
- Endometriosis symptoms vary from person to person but some common symptoms are abdominal pain, pain during sex, irregular periods, and infertility.
- Though endometriosis is incurable, there are ways to relieve the pain including birth control and avoiding your individual endometriosis triggers.
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 of the uterus. This disease affects an estimated 200 million individuals worldwide, myself included.
Although endometriosis is typically found on reproductive organs inside the pelvis or abdominal cavity, it can grow anywhere, including the large and small bowel, 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 describe what it's like to live with endometriosis, list the warning signs of a potential endometriosis diagnosis, and provide tips on how to advocate for yourself if you think you have endometriosis. In addition to my own story, other women who live with endometriosis have bravely given their experience with endometriosis.
What does endometriosis pain feel like?
Endometriosis affects each person differently. It's also what I like to refer to as an "all-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 social with friends, I often find myself in a fetal position with a heating pad on my abdomen." -Kaitlyn Ireson"Pain from endometriosis can be felt during your period, or all month long - cyclic versus noncyclic pain," says Heather Jeffcoat, DPT, owner of Femina Physical Therapy and author of "Sex Without Pain: A Self Treatment Guide to the Sex Life You Deserve."
Endometriosis presents different types of pain at different times. For example, late at night, I tend to have sciatic endometriosis pain. When this happens, I can feel a deep, intense pain in my left leg.
Sometimes, I'll also experience a burning sensation in my urethra. This is because I have interstitial cystitis (IC), an incurable bladder condition that causes pain and pressure in the bladder area, in addition to urinary tract symptoms. I was diagnosed with IC just before my official endometriosis diagnosis. Whenever I'm experiencing an "endo flare-up" my IC acts up too.
"There are many chronic overlapping pain conditions with endometriosis, so it's not uncommon for women to also experience pain in their lower back, hips, burning down the top of their thighs, bladder pain (IC), vulvar pain (vulvodynia), rectal pain, neck, and jaw pain," says Jeffcoat. "Painful intercourse is also very common. Interstitial cystitis, vulvodynia, and endometriosis occur so frequently together that they are often referred to as 'evil triplets.'"
Endometriosis can cause pain:
- In the abdomen or lower back
- In the intestine
- In the hips, thighs, or legs
- During or after sex
- During bowel movements or urination (if you have IC, you may urinate blood; I do)
"In severe cases, dysmenorrhea [painful periods] or pelvic pain can be debilitating," says Barry Witt, MD, director of WINFertility and Greenwich Fertility and IVF Center. "Menstrual periods may be very painful and can result in missing work. Some women will require surgery or multiple surgeries to help control the pain."
Common symptoms of endometriosis include:
- Bloating (endo belly)
- Painful periods (dysmenorrhea)
- Irregular periods or spotting between cycles
- Painful intercourse
- Pain with bowel movements or urination
- Heavy bleeding
- Infertility
- Chronic fatigue
- GI problems
The bottom line? Endometriosis pain can be felt everywhere. Living with endometriosis is like riding a mental, emotional, and physical rollercoaster. This is especially true for people who deal with endometriosis-related infertility.
What triggers endometriosis pain?
Because endometriosis is individualized, each person has their own "triggers." These triggers cause what the endo community refers to as an "endo flare-up." For me, eating inflammatory foods such as red meat, dairy, or tons of gluten, having sex, or being overly stressed will cause a flare-up.
"A better question would be what doesn't trigger endometriosis pain," says Stephanie Lipnicki, DACM, LAc, who has Stage IV endometriosis and is based at Natural Alternatives Center for Wellness in Allentown, NJ. "Foods that are more inflammatory, too much sugar, hormonal imbalances, estrogen that's too high, estrogen that's too low, and low levels of progesterone."
Endometriosis is particularly frustrating because almost anything, from certain lifestyle choices (including your diet and stress levels) to intimacy, can set it off. The best way to narrow down what triggers your endo is to create a pain journal. Use it to log when you feel pain and when you don't. List the foods you ate that day, whether you were intimate, or if you were on your menstrual cycle. This way, you'll have a record both you and your doctor can analyze together.
How do I know if I have endometriosis?
The gold standard to diagnose endometriosis is to have laparoscopic surgery. A laparoscopy will allow your doctor to view 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 expert in endometriosis can point to a strong likelihood of endometriosis."
Although endometriosis is characterized by pain, some individuals may feel no pain at all - sometimes referred to as "silent endometriosis." In other cases, having infertility issues may also lead someone to discover that they have endometriosis. Because endometriosis symptoms vary in every individual, it's important to listen to your body.
Patient perspective: "For me, it's nausea, cramping, and an agitated scratching feeling inside. The discomfort and fatigue can make it hard to do normal daily activities like work and errands." -Caroline Macon"If you suspect you have endometriosis, track everything," says Lipnicki. "Even if you aren't sure if a symptom relates to potentially having endometriosis. In terms of specifics, emphasize the stabbing, labor-like pains."
How do I explain endometriosis pain to a doctor?
The number one way to explain endometriosis to your doctor is to be open and honest about everything that's going on with your body. If he or she doesn't listen, find a new doctor. It took 14 years and seven different specialists before I finally found a doctor who not only listened to me but believed me.
Despite the fact that endometriosis affects one in 10 individuals worldwide, the average endometriosis diagnosis takes six to 11 years. Years of misdiagnosis and nonchalant doctors can take a toll on your mental health. For a short time, I actually considered that the pain I was feeling was all in my head. This is why it's so important to listen to your body and advocate for yourself.
"Patients need to advocate for themselves, and especially if they have multiple sources of pain," says Jeffcoat. "It is well known that endometriosis excision surgery will fully remove the endometriosis in the area, but if the pain is also felt elsewhere, patients need an interdisciplinary team of specialists working together to manage the other areas of pain."
Insider's takeaway
Endometriosis pain can vary from day to day, and depending on the person, it can be felt in different ways. While some may feel round-the-clock pain, others may only experience 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 a medical diagnosis. In addition to this, there are support forums like the Endometriosis Resource Center that can offer community support.
Patient perspective: "I wouldn't choose to be in it, but I am, and I'm so thankful for the amazing community of people that understand and lift each other up and try to help each other however they can. They make me feel less isolated, and sometimes that makes all the difference." -Emily ThorpeRelated stories about women's health: