8 Ways People With Endometriosis Deal With the Pain
Since you clicked on this article, chances are you’re living with endometriosis and looking for ways to escape the pain. We don’t blame you. Endometriosis has a notorious reputation as an excruciating, complex condition with a tangle of potential mechanisms that doctors are still attempting to unsnarl.
Some people with the condition are relatively fortunate and don’t experience any pain, ob/gyn Mark Dassel, M.D., assistant professor, surgical director for the Center of Pelvic Pain, and director of the Center of Endometriosis at the Cleveland Clinic, tells SELF. But others—possibly including you—experience a level of pain so debilitating it’s difficult to keep their jobs, take care of their families, nourish their relationships, and maintain their mental health, Dr. Dassel says.
For some people, treatments like laparoscopic surgery to remove endometriosis lesions and hormonal medications help to resolve some of the pain. But it is not uncommon to have significant residual pain that is either incompletely or barely reduced by the standard anti-inflammatories you might normally reach for to soothe an aching body, Dr. Dassel says. This is because of the numerous mechanisms of endometriosis pain. It’s not just about the characteristic endometriosis lesions that grow and bleed on various internal organs. Endometriosis can also cause pain through tissue or nerve damage and inflammation.
Peak endometriosis pain tends to occur during a person’s period and vaginal intercourse, but you may also experience pain from this condition at other times, Dr. Dassel says. No matter when endometriosis pain strikes, finding relief is often a winding, frustrating journey. So we asked a few people with endometriosis what they do when it’s at its most painful in the hopes of helping anyone who needs it.
Of course, the following suggestions are not a substitute for medical advice. If you are experiencing new or worrying pelvic pain, it’s important to see your primary care doctor or ob/gyn to figure out what’s going on (whether or not you’ve been diagnosed with endometriosis). This isn’t foolproof, as doctors can definitely get things wrong or underestimate how much pain a person is in—an unfortunate fact that many with endometriosis know from personal experience. But it’s still a good idea to check in with the most trustworthy medical professional you know when making any major changes to your endometriosis treatment plan. Now, let’s get to the strategies.
1. Use two heating pads instead of one.
“I'm one of those folks who is never without a heating pad,” Abby N., 27, author of Ask Me About My Uterus, tells SELF. She uses two to simultaneously soothe her stomach and lower back (a common site of referred pain in endometriosis, says Dr. Dassel).
This humble and inexpensive at-home remedy is popular for a reason. Heat can help relax pelvic muscles and reduce cramping, according to the Mayo Clinic. “Since a lot of this pain has a muscular component, heat is definitely good,” Dr. Dassel says. To avoid burns, Dr. Dassel generally recommends going for 20 minutes on/20 minutes off when you use a heating pad, but be sure to follow your specific device's instructions.
A 2018 review of six randomized controlled trials in Scientific Reports noted that some small studies have suggested that heat therapy may be comparable to nonsteroidal anti-inflammatories in treating period pain for some people. With that said, the review didn’t specifically study people with endometriosis, and more research is necessary to definitively say that heat therapy is just as good as pain meds at treating period pain in anyone.
2. Sink into a hot bath.
Sometimes Abby takes advantage of the fact that she works from home when dealing with endometriosis. “If I'm on a conference call, there's a 99 percent chance I'm in a hot bath,” she says.
Dr. Dassel says that very hot baths can be effective for endometriosis pain because they immerse all of the affected areas in heat at once, such as the pelvic floor, the abdominal walls, and the lower back.
3. Take your heat therapy to go.
Sometimes you can’t stay at home in a hot bath or with a heating pad resting on your abdomen. Lindsey C., 27, tells SELF that she swears by Therma Care heat wraps for those situations. “They are the best for when you're in pain but you still have to be able to function normally away from a wired heating pad,” she says. “They wrap around your body…and they last for eight hours.”
Lindsey recommends the variety that’s made for your back and shoulders, which cover more surface area than the stomach ones. “I keep one in my desk at work, just in case I ever need it,” she says. Abby is also a huge fan of Therma Care heat wraps when she’s on the move.
4. Consider seeing a pelvic floor physical therapist.
Nora N., 27, has undergone laparoscopic surgery for her endometriosis. She is also on hormone therapy and medication to help with the pelvic nerve damage caused by the condition. When these measures didn’t help her pain subside enough, a specialist referred Nora to pelvic floor physical therapy. Nora tells SELF that this has been a “lifesaver” in managing her endometriosis.
While various medical treatments can work wonders with endometriosis pain, they often don’t address what doctors are coming to understand as one of the most common secondary sources of this discomfort, Dr. Dassel says: a form of chronic pelvic pain called high tone pelvic floor dysfunction.
This is best understood as the result of your pelvic floor’s self-defensive mechanism in response to endometriosis, Dr. Dassel says. It’s kind of like your pelvic floor’s attempt to protect the underlying structures that are being more or less pummeled with pain and inflammation.
“If you imagine someone punching you in your thigh or ribs, you might react by kind of bending over into a defensive posture,” Dr. Dassel explains. “It’s essentially your body saying, ‘Hey, this area hurts, don’t use it.’ ”
This continuous tension (called hypertonicity) can result in chronic pain that is often described as a dull, achy cramping that radiates into the back or down into the legs or vagina, Dr. Dassel says. It can be aggravated by your period and activities like vaginal intercourse, bowel movements, urination, and exercise. Nora, for instance, didn’t have sex with her partner for two years.
Pelvic floor physical therapy helps people learn how to relax those muscles through various methods like stretching, breathing exercises, and activating trigger points via intervaginal pressure applied by the physical therapist or a therapeutic wand that the patient is taught to use on themselves. (Not unlike the way a massage therapist will manipulate knots in your back muscles, Dr. Dassel says.)
Nora credits this combination of medication plus pelvic floor physical therapy with relieving pain in her pelvis, lower back, and butt, as well as letting her regain intimacy with her partner. “I don’t [know] what’s doing what. But I’m certain I needed both therapy and meds to get to where I am today,” Nora says. “It helped me ease my way into trying sex again, and over the course of having sex more often, it [became] easier and less painful.”
Of course, finding a specialist in pelvic floor physical therapy, making it to those appointments, and paying for the treatment isn’t feasible for a lot of people. But if you’re curious, consider asking your doctor to help you find a specialist or look for options near you through the American Physical Therapy Association.
5. Experiment with yoga.
We absolutely are not suggesting that you force yourself to move when all you want to do is lie down and try to breathe through endometriosis pain. But some people with endometriosis have used yoga to ease their discomfort when they feel up to it.
Although the amount of evidence specifically supporting the use of yoga for endometriosis pain is scant, Dr. Dassel has seen many of his patients benefit from the practice.
“I definitely think yoga can be effective,” he says. “A lot of the yoga poses [people use for endometriosis pain] are actually very similar to the stretches you’ll learn in pelvic floor physical therapy” in that they work on various muscles in the pelvic floor, core, and lower back, he explains. And according to the National Center for Complementary and Integrative Health (NCCIH), yoga appears to be effective for reducing low-back pain. Since endometriosis is a more complex cause of pain than many other issues that cause lower back discomfort, there’s no guarantee that yoga will help. But it might.
Sabrina L., 38, tells SELF that although she has had three surgeries to remove endometriosis lesions and tried various hormone therapies, she experienced serious residual pain. In her research for alternative treatments, she came across claims that yoga could help. “I was skeptical but willing to try. And much to my surprise, it proved to be very beneficial,” she says. Doing yoga has helped Sabrina alleviate stabbing cramps and back pain in the moment, and she’s also found that “practicing it regularly, even when I’m not actively in the throes of pain, decreased my symptoms dramatically.”
Sabrina figured out which poses felt good by trial and error. “I personally [get] the most relief from a series of Downward Dog into Cat Pose, to Cobra, to Child’s Pose, and sometimes [Garland Pose],” she says.
Kristin S., 30, tells SELF that she has had two laparoscopic surgeries and been on various types of birth control in an attempt to manage her endometriosis pain. When that wasn’t enough, she gave yoga a go after her ob/gyn recommended it. She says that Pigeon Pose and several other poses involving inversions and twisting have helped tremendously with endometriosis-related pain in her hips and pelvis. Along with pelvic floor therapy, Kristin has found the gentle movements of yoga to be incredibly soothing and grounding when she’s confronted with severe endometriosis pain.
6. If cannabis is legal where you live, consider trying it.
If you’re fortunate enough to live in an area where medicinal and/or recreational cannabis is legal, then you might consider discussing with your provider this increasingly popular option for a variety of painful conditions.
While we need more research to elucidate the exact mechanism that may be in play here, Dr. Dassel says the leading theory is that the cannabinoid compounds in cannabis (like THC) can reduce our perception of neuropathic pain via the endocannabinoid system. This system contains cannabinoids that the body makes as well as cannabinoid receptors, which are located throughout the body, including the central nervous system and brain, according to the U.S. National Library of Medicine. “We know endocannabinoids play a role in the transmission of nerve signals in the way the brain understands pain, so that’s a likely mechanism,” Dr. Dassel says.
Brielle L., 24, tells SELF that she often relies on cannabis that she takes with a vape pen before bed. “[It] takes off the edge of any extra pain I’m feeling and helps me sleep,” she says. She says that cannabis is part of what has allowed her to regain the independence endometriosis had stolen from her.
Georgie W., 30, has suffered from debilitating endometriosis pain in her pelvis, back, and legs, since she was 13. “The pain and fatigue made it hard to stand; I’d see spots and start to sweat,” she tells SELF. In the last year, after getting a medical marijuana card from her doctor, she has experimented with using cannabis. It doesn’t take the pain away completely, and she still takes her prescribed medications. However, “It definitely helps significantly,” she says.
Dr. Dassel believes that the use of cannabis products for endometriosis pain warrants more research before we can say anything definitive or recommend it as a treatment. But he does find the number of people who find genuine relief from it intriguing and is encouraged by the potential for further study.
7. Look into CBD orals or topicals.
Brielle says she first looked into cannabidiol (CBD) six years ago after getting fed up with the side effects from various medications she was on to treat endometriosis along with PCOS and interstitial cystitis. “I was desperate to try anything,” she says. “[CBD] lessened the pain right away.”
She takes a liquid dose every morning and night, and when she’s having a bad flare-up, she’ll add a CBD joint and muscle rub to the mix, applying it wherever she’s experiencing acute pain. “It helps me be able to stand upright and do the things I need to do,” she says.
You’ve probably heard a ton of buzz about CBD but may not be sure exactly what it is. CBD (also called cannabidiol) is a compound found in cannabis that does not contain THC and, therefore, doesn’t get you high. The theory is that, as a cannabinoid, CBD affects your endocannabinoid system, thereby reducing pain. But the thing is that scientists don’t actually have a lot of research on CBD in humans, so they’re not sure how effective it is versus how much of any pain-relieving benefit can be chalked up to placebo effect. Here’s a deep dive on whether or not topical CBD products can actually work for pain.
With that said, Dr. Dassel has met a number of people who say they’ve experienced success using CBD for endometriosis pain. “It needs further study,” he says. “But I do find it interesting how many women have said it’s helpful. I've heard that anecdotally from a lot of my patients.”
Just be skeptical of any miracle claims and the fact that studies show many CBD products have more or less CBD than they claim. You should definitely do your research to try to make sure you’re getting a quality product.
8. Look into getting a TENS unit.
A Transcutaneous Electrical Nerve Stimulation (TENS) unit is a device you can buy over the counter and use at home. TENS units are thought to reduce pain by stimulating the nerves and affecting the body’s ability to receive pain signals, according to a 2002 review published in Cochrane Database of Systematic Reviews, which examined results from nine randomized controlled trials. TENS units do this by sending quick bursts of electric currents into a person’s body through electrodes placed directly on the skin.
The Cochrane review found that high-frequency TENS units can be effective in treating period pain, but there is not enough evidence to conclude anything definitive about the efficacy of low-frequency units. A review of six studies on the use of TENS units to treat period pain, published in Complementary Therapies in Clinical Practice in 2016, similarly found promising but limited evidence supporting various types of TENS units for menstrual discomfort.
The U.S. Food and Drug Administration has approved a number of these products for pain relief in general (and at least one for migraine relief), but none specifically for endometriosis-related pain. Still, some people with endometriosis rely on TENS units, which can range in price from under $20 to over $100, to relieve at least some of their suffering.
Courtney H., 26, tells SELF that she uses a low-frequency TENS unit on her lower abdomen when she is experiencing a lot of cramping, both during her period and in between. “[It] just takes the intensity away. It sort of feels like a massage,” she says. “[It] allows me to go to work on days I typically am curled up in a ball.” Dr. Dassel adds that he has patients who have used TENS units to reduce referred back pain.
Just like everything else on this list, a TENS unit isn’t likely to be the one thing that magically wipes endometriosis pain from your body. If only it worked that way. Hopefully, though, hearing how a bunch of people with endometriosis manage the condition can provide some inspiration for you if you need it.
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