It’s impossible to tell by looking at someone, but endometriosis is an incredibly painful and sometimes debilitating multi-system disease that causes a lot of problems for those who have it. Endometriosis is a disease where tissues similar to the uterus’ endometrial tissue grow elsewhere in the body. It’s sometimes estimated that almost half as many people live with endometriosis as with diabetes—nearly two hundred million people globally. While people are familiar with the basics of the latter, endometriosis is still relatively unknown to the general public despite being so prevalent.
That means millions of people around the world, primarily assigned female at birth, live with a disease that causes chronic pain, bowel and urinary issues, sexual dysfunction, infertility, and a long list of other symptoms. I’m one of those people, and even after a surgery that gave me some reduction in pain, it’s a lifelong condition. If you also have endo, you deserve to have a better quality of care, and a better quality of life.
That’s why I’m going to break down some strategies to navigate endometriosis, like suggesting some gear to get you through a flare-up, and recommendations from professionals who advocate for patients with endometriosis every day.
Bad periods are not normal
Let’s start at the beginning because that’s where most people have their first endometriosis symptoms: their period. People who menstruate are told that pain and cramps are normal. While some degree of cramping is typical, pain that limits your activity or is non-cyclical is something to pay attention to. Many don’t even find out they have endometriosis until they experience infertility, another of endometriosis’s common symptoms.
Dr. Sallie Sarrel, co-founder of The Endometriosis Summit, happening March 2024, told Lifehacker that, “Endometriosis is a whole-body disease, and while you may have painful cramps or heavy periods that affect your ability to participate in life, symptoms like back pain, bloating, and stomach aches, as well as urinary urgency and frequency, are also related here.” Pain during or after sex, called dyspareunia, is another big red flag.
Endometriosis has no cure, treatments are limited, and it varies in expression from patient to patient. Someone with stage 1 endometriosis could have extreme pain while someone else with more extensive disease might have less.
Corey Silbert Hazama, co-owner of Beyond Basics Physical Therapy Downtown, told us there’s more to it than pelvic pain or reproductive involvement, “Endo implants most commonly on the inside of the lining of the abdomen, the ovaries, fallopian tubes, between organs of the pelvis, [and] the outsides of the bowels, but can [sometimes] be found on the diaphragm, liver, even the pericardium of the heart.“
A fight starts up wherever the lesions anchor, and Silbert Hazama explained that, “The immune system [then] mounts an attack to try to address this invasive tissue and inflammation ensues.”
There’s no biomarker test, definitive scan, or physical exam that determines if—or where—lesions are growing. To be diagnosed, surgeons remove suspect tissues, which are examined by a pathologist for key features of endometriosis.
Lesions are most common in the pelvic area, but they can grow in other areas, too. Without removal and pathology, diagnosing extrapelvic endo that hasn’t grown large enough to be seen on scans can be difficult and take years.
What to do after an endometriosis diagnosis
If you already have a diagnosis from surgery, pat yourself on the back for listening to your body. It’s a long journey to get confirmation of endometriosis—the average person waits almost 10 years, and in my case, it took more than 20 years of symptoms to find the cause.
Due to the lifelong nature of the disease, it’s vital to keep going once you have a diagnosis, and Sarrel said diagnosis is just step one. “You have to put yourself in the driver’s seat of your own care. Because you’re diagnosed through surgery, you have to educate yourself: Was it excision, was it ablation?”
While some people experience significant relief from surgery, up to 30% of people have recurrence after surgery and need further procedures. Often, lesions are missed in the initial procedure, or they grow in new places.
“The average gynecologist may not recommend things like excision or physical therapy,” Sarrel said. “If you get care and you’re still not feeling OK, it’s OK to vote with your feet and go somewhere else.”
Putting together a multidisciplinary care team is crucial. If you still have symptoms, pursuing full excision is currently considered the gold standard of treatment—ablation is said to only burn off the surface of lesions, so do your research on methods and surgeons beforehand. No matter your care plan, don’t neglect your mental wellbeing and your long-term care outside of seeking a surgical specialist.
Living with endo feels like you’re a balled up piece of paper— tense muscles in the pelvis, abdomen, legs, back, and other zones cause pain and can even lead to central sensitization issues with nerves, so physical therapy can be a game changer for long-term pain management.
Silbert Hazama told us, “Mental health therapists who work with chronic pain and sexual health are incredibly helpful in reprogramming the brain, while physical therapists can work to reprogram the muscles and their responses.”
Sarrel herself has endometriosis, and regularly posts on Instagram about advocating for yourself. “Having a disease where not only society gaslights you, including most doctors,” she said in an email, “You learn to gaslight yourself, too. You need someone on your team to help you process what’s going on. For some, that’s a mental health counselor; for others, that’s a physical therapist. But make sure that you have someone.”
Tools to help ease your endometriosis symptoms:
How to fight the flare-ups
The worst part of living with endometriosis is getting slapped with a flare-up out of nowhere. Pain, cramps, and gastrointestinal and urinary symptoms can all ramp up while you’re experiencing a flare. Some people experience symptom flare during their period or other hormone fluctuations; others have issues after sex, a pelvic exam, or strenuous activity. Food and alcohol are triggering for some, but everyone’s symptoms are related to where the disease is in their body.
People like me travel with miniature bottles of Aleve and cannabis to offset unexpected pain, but having some supportive health gear at home or on the road can also help you get through the flare.
Heat can help, but don’t overdo it: a weighted microwaveable pack or old-fashioned hot water bottle is a safer choice. Sarrel said this is crucial: “When you use an electric hot pack, the pack stays the same temperature the whole time. Nerves in the abdomen will experience changes after 20 minutes, and that’s when you can get erythema [redness] or burns. It’s very important to use a hot pack that dissipates heat.”
TENS machines work through redirecting pain signals with electronic signals. If you don’t want to be literally wired to a machine, a portable model is the way to go. Brands like this make them just for period pain, but they don’t really have special features other than being pink, so buy one that suits your individual needs.
KT Tape has helped me get through the lower back pain caused by deep endo, and just a few strips can give you support or compression. Sarrel said to watch out though: “If you’re using it on your hips or your sacrum often, you should really be evaluated for musculoskeletal dysfunction.”
Sexual dysfunction is a major issue for folks with endo, and the people working to use innovative techniques to allow them to lead normal lives are angels. Silbert Hazama told us when it comes to sex and endo, “There is no grin and bear it and get through it, because that, in the long run, could make things worse.”
Deep penetration can be severely painful for people with endometriosis, both anal or vaginal. Functional tools like the OhNut allow partners to restrict penetration depth at different levels, adjusting for comfort as you go with four soft rings that stack and stretch.
“When there is pain, it can be very hard to focus on anything else, let alone sexy time,” Silbert Hazama said, “and if touching the areas that would typically elicit pleasure results in pain instead, then the body and brain is not going to be very perceptive to arousal and sex.”
Compression underwear can be another strategy for pain confusion. Whether you use it for general cramps or post surgical recovery, the compression provides gentle support directly where you need it.
Stick-on nanotech, menthol or capsaicin pads also help to confuse pain signals, just like any other inflammation or injury, so try sticking something on your back or abdomen to help scramble the screaming.
Sarrel even suggested a work aid: “I bought a ball chair, and that helps put a little less pressure on my sacrum while I sit and work, and it gives a little bit of feedback to my abdominal muscles.”
Strategies to minimize pain daily
There was a time in my life when I was taking ibuprofen by the handful on a near daily basis to calm my cramps. That’s really not sustainable—long-term use of OTC pain medicines can cause damage to the liver, kidneys, and stomach over time.
Sarrel stressed, “People should watch the amount of NSAIDs, Tylenol, and OTC medications they take. While they can provide tremendous relief, we can’t be taking too many.”
Supplements like cannabis, PEA, and turmeric are reported to have beneficial effects in some people with endo, so if you’re really suffering, it’s worth investigating yourself. One thing to note: Always disclose cannabis use before surgery. It’s a good idea to let your doctor know what supplements or remedies you take, anyway.
Sarrel tells her patients to try to get up, even when it’s hard: “Movement every day can help. Nobody is saying you have to go run a marathon, but sometimes just stretching in a light, sunny, room—or maybe it’s a gentle walk, but some [movement] is done every day.”
A physical therapist will give you homework to help you feel better, and Sarrel said, “I always show patients a home piriformis stretch and sacral rocking. Even if all you can do is stand up and reach to the sky, we’re just looking to change the input.”
Until a cause, cure, or additional treatments come along, it’s hard to fight the daily battles of endo, but you can do things to make it bearable. Living as much of the life you want to is a big part of it, and Sarrel said it best: “You don’t have to stop what you love because of endometriosis.”
