Endometriosis pain doesn't stop when you can't see a doctor. We spoke with a researcher on endo home remedies that work.
Madalene Zale, a project manager and researcher at Jefferson, has lived with endometriosis for 15+ years. “This is a disease that many of us suffer through in silence,” says Zale, “in part because of the stigma around talking about women’s health, and in part because the pain and disruption it causes can be really isolating.”
To better understand sources of stigma, Zale conducted research to explore physicians’ comfort with diagnosing and treating the disease. Although there is no cure, many patients have done their best to find coping mechanisms that alleviate some of the symptoms and effects.
Endometriosis is a common disease in patients, with very few options for therapy and successful pain relief. “This can be a very difficult disease for many patients,” says OBGYN physician William Schlaff, who is an active researcher in the field of endometriosis. “It’s associated with persistent and chronic pain that doesn’t always respond to over-the-counter medication, can cause infertility and can greatly impact a patient’s quality of life.”
During the pandemic, many patients have limited their in-person medical visits and are looking to things they can do at home to relieve the pain and discomfort. Here are a few techniques that some, including Zale, have said help them get through painful flare-ups.
Take time to rest
You are not lazy if you need to nap or sleep in. As a person with chronic pain, your body is constantly working overtime to get to a baseline where you can function, so it only makes sense that you will be tired. Flare-ups are devastating blows to your system–they can knock you out of commission for days at a time. Don’t try and rush back to “normal.” Your body needs time to recover.
Connect with others
There are many resources and support groups online and on social media platforms, like Facebook, Instagram and Twitter. These communities can be a welcomed opportunity for you to share your symptoms and experiences with others who have similar stories. And though it can seem scary at first, it can be incredibly useful to talk about your endometriosis with friends, family, and colleagues, too, so that they can learn about the condition and how it affects you. Their questions or suggestions—“Why don’t you just have a hysterectomy?” or “Have a baby!”—may seem intrusive or insensitive at first, but that’s because most are uninformed about the subject. If you have the capacity, you can hopefully use this time as a teaching/learning opportunity.
Seek out physical therapy
Physical therapy (PT), both pelvic floor and regular, has been consistently helpful. Endometriosis causes adhesions, and surgery causes scar tissue, both of which can limit normal mobility of connective tissue, disrupt the function of the tissues they restrict and cause tension at one point in the fascia to pull across to multiple other connected points. Interestingly, research has shown that adhesions in and of themselves are not always associated with pain. “Pain in endometriosis is called neuropathic pain – it’s a pain that can come from damage to nerve cells or an oversensitivity that sends signals of pain unnecessarily,” says Dr. Schlaff. “However, PT can be very helpful for neuropathic pain, just as it can be helpful for women who don’t have large adhesions, but experience pain nonetheless.”
Physical therapy uses manual therapy to relieve and soften some of that pressure throughout the pelvic floor, and in other places, restrictions have occurred in the back and legs. You can work with your PT to learn self-treatment techniques to manage symptoms at home, with exercises, stretches, and more, and also use telehealth and video visits to check in on form and technique.
Try reducing inflammation through diet
This is a whole-body disease that is characterized by inflammation. Chronic pain also leads to inflammation, leading many patients to have pain outside of their abdominal region, with leg and back pain being very common and persistent symptoms. You can try and reduce the amount of inflammation from endometriosis by adjusting your diet. This approach may be helpful, but it hasn’t been thoroughly studied and proven effective.
Turmeric is one food item that has anti-inflammatory properties. Rigorous studies are limited, but some have suggested cutting out certain foods that contain pro-inflammatory trans-fats such as fried fast foods, purchased baked goods, and even red meat, which is high in saturated fat. On the other hand, foods high in omega-3 fatty acids, like salmon and mackerel, walnuts, and flax seeds, can help reduce inflammation. These dietary changes could be worth a try, but it’s important to remember that each body is unique, and there is no “one-diet-fits-all” solution. So while some of these things may work for you, they may not work for everyone, and you should always discuss any proposed dietary changes with your care team.
Invest time in finding a healthcare provider who works for you and listens
Granted, this isn’t a home remedy, but it’s worth pointing out. Get a second opinion. And a third. You are in charge of your own health care, and seeking additional opinions is valid. Don’t be intimidated by clinicians who suggest a drug or care plan that you don’t feel comfortable with. If preserving your fertility is important to you, make that clear with your provider. If pain management is a priority, make sure your care team understands that you’ll do whatever it takes to get there. It can take a lot of research to find someone who personally connects with you, which can be a time-consuming and draining process. It will be worth it in the end to have someone you can rely on and can help you navigate and coordinate care and next steps with such a complex disease with so many moving pieces.
Don’t be so hard on yourself
There’s a big psychological component to endometriosis. On average, it takes most people 10+ years to get a diagnosis because many people (from patients to healthcare providers) unfortunately disregard the pain as a normal part of menstrual cycles. Give yourself the permission to cancel a date, take a sick day, or ask to work from home. Prioritize you, and have patience with yourself. Baths, heating pads, acupuncture, and massages can also help provide short-term symptom relief for endometriosis-related pain and flare-ups. Make sure you always take time to listen to your body because pain is not normal.