Endometriosis is a painful disorder in which endometrial tissue (the endometrium, or tissue that forms the lining of the uterus) grows outside of the uterus. Alongside the common symptoms of endometriosis, including cramping and painful menstruation, many people living with the disorder also experience joint pain. It is difficult to determine the prevalence of joint pain in those with endometriosis, partly because endometriosis often goes undiagnosed for years. However, many people do report experiencing the symptom. In fact, more than 2,000 MyEndometriosisTeam members report experiencing joint pain.
Many members discuss how joint pain has impacted their daily life. “Beginning about 10 years ago,” wrote one member, “every time I had my period, my muscles and joints started hurting so bad that I could barely get out of bed.” Another member shared, “I’m having pain in every joint in my body, and it’s hard to use my hands.”
Joint pain is usually felt in the knees, hips, hands, feet, lower back, and spine. This pain can be intermittent or constant. Those who experience joint pain often describe it as causing their joints to feel achy, sore, or stiff. Others describe experiencing burning or grating sensations. One member described the peculiar sensation they felt: “Yesterday, I had pain, and then all my joints started hurting — and I mean extremely hurting. … It feels like if you stuck a needle through the joint, it would relieve the throbbing.”
When already living with endometriosis pain, the addition of joint pain can be unbearable. One of our members described her knee pain as so bad that at 38, she is “beginning to walk like an elderly woman.” Another member wrote that their joints are “screaming in pain.”
Joint pain can impact a person’s ability to move around and even get a good night’s sleep. Severe joint pain can also affect the ability to work, go to school, or care for family.
The effects of joint pain aren’t only physical. Endometriosis and its symptoms, including joint pain, can affect a person’s mental and emotional health and well-being. One member shared that they had “been incredibly depressed. Today, my hips, sacroiliac joints, and back are in an incredible amount of pain.”
Some members have expressed frustration in trying to find treatment for their symptoms. As one member shared, “I was told I have arthritis. And no explanation for anything else.” Another member added, “What concerns me the most is that my ‘arthritis’ only hurts during my period. I’m concerned the endometriosis is attacking my joints. My new doctor only said, ‘Endometriosis won’t attack your joints.’”
Researchers are not yet certain how endometriosis may play a role in joint pain. The cause of endometriosis itself remains poorly understood. It’s only been in the last few years that researchers have gained more insight into the full spectrum of systems that endometriosis can affect.
It’s clear that many people living with endometriosis also experience joint pain. So, does endometriosis directly cause joint pain? While there is no definitive answer yet, research has begun to provide some insight. Studies have shown that some people with endometriosis have ongoing inflammation as well as autoantibodies (antibodies that mistakenly attack the body’s own healthy tissues), both of which can cause joint pain.
Research has also determined that endometriosis increases the risk of rheumatoid arthritis (RA) — an inflammatory disease that causes pain and swelling in the joints. However, more research is needed to explore the connection between endometriosis and joint pain, as well as the particulars of this relationship (such as why some people with endometriosis experience joint pain that coincides with their menstrual cycle).
Lupron (leuprolide), a medication used to treat pain and reduce lesions caused by endometriosis, also can cause joint and bone pain as a side effect. One member shared, “I ended up asking the doctor to take me off of it because the side effects were so terrible. I had … joint pain so bad that some days, I couldn’t even put weight on my ankles.” Another member added, “I’ve also noticed increasing joint pain and insomnia. I’ve decided to stop Lupron and seek out an incision specialist.”
Several factors can increase a person’s risk of developing joint pain. Risk factors for RA, in particular, include:
Joint pain itself is treated in a variety of ways, though there is little research on which treatments are the most effective for endometriosis-related joint pain. You may need to work with your doctor to try different strategies before you find what works for you.
You may want to try hot and cold packs for immediate at-home pain relief. A hot pack can alleviate muscle spasms and improve blood flow, while cold packs can help reduce inflammation and swelling that may be contributing to joint pain.
It’s been shown that prolonged stress can perpetuate cortisol dysfunction, which increases widespread inflammation and pain. Reducing stress through activities like cognitive therapy, gentle yoga, or tai chi may be helpful in alleviating chronic pain.
One MyEndometriosisTeam member found some pain relief through a combination of approaches. They advised trying “a warm shower (and just let the water hit you) or a bath to relax the muscles. And ibuprofen or Midol to help with the inflammation.” Another member suggested massage therapy: “If you get someone knowledgeable about essential oils, that can really help with localized pain management. I recently have been trying this and am pleased with a good amount of success. I plan to continue with that and chiropractic care together.”
If RA is causing your joint pain, your doctor may recommend or prescribe the following treatment and pain management options.
Nonsteroidal anti-inflammatory drugs can alleviate some joint inflammation and reduce pain. These medications are available both over the counter and as prescriptions in stronger doses.
In the early stages, the goal of RA treatment is to slow down the disease. Slowing RA’s progression can help relieve joint symptoms. Several types of medications are used to treat RA and relieve related joint pain, including corticosteroid injections, disease-modifying antirheumatic drugs, and biologic medications.
Your doctor may recommend specific therapeutic exercises to help address joint pain and swelling. A physical therapist can design exercises to help you achieve a certain goal — in this case, decreasing pain and stiffness.
You don’t have to go through endometriosis and its symptoms alone. MyEndometriosisTeam is the social network for those living with endometriosis and their loved ones. Here, you can meet others who know exactly what you’re going through, ask them questions, and share tips.
Have you experienced joint pain with endometriosis? What strategies have helped? Share your experience and tips in the comments below or by posting on MyEndometriosisTeam.