A woman crouches in pain as red waves pass through her body.

Endometriosis and Fibromyalgia

We often hear about the connections (comorbidities) involving endometriosis and other diseases. Some of these include autoimmune conditions, chronic fatigue syndrome, and fibromyalgia. What further complicates matters is that many of these diseases (and the experience of them) are very unique to each individual. Fibromyalgia is classified as wide-spread pain in the muscles, tendons, and ligaments.1 It is considered a brain/nerve disease. But I’ve discovered in recent years that each person’s experience of fibromyalgia is much more varied. It can range from mild lower body pain to over sensitivity to touch and stimuli. There is no doubt that the relationship between endometriosis and fibromyalgia needs extensive additional research.

Endometriosis and fibromyalgia

When I was originally diagnosed with fibromyalgia (on top of my existing endometriosis and autoimmune conditions), I sort of felt like doctors diagnosed me by default. Meaning that they ran a million and one additional tests that didn’t reveal much, so they went with the additional fibromyalgia diagnosis by default. Basically, they pretty much ruled out any possible other disease before they diagnosed my fibromyalgia.

From personal experience, and what I have learned about the experiences of others, when you are dealt a hand such as endometriosis that requires almost constant management of various levels of pain, your body then becomes more likely to develop fibromyalgia. It is unknown if this is a “result” of living with the constant pain. Or if it just happens often coincide with certain diseases. Experts refer to this as a correlative relationship rather than a causative relationship.

Looking at patient experience is key

While basic rational thought could postulate some of the ways these ideas are related, there is very little scientific information or studies done speculating on the specific relationship between constant pain management (as is the case with endometriosis) and the development of fibromyalgia, a pain processing disease. While I’ve never claimed to be a scientist, I am a patient who has spent years trying to manage both of these conditions. And I believe that looking at the patient experience is key to identifying the exact relationship between the endometriosis and fibromyalgia.

How do we manage both endometriosis and fibromyalgia

But when it comes down to it, my concern as a patient is primarily with daily disease management. How do we even begin to manage both? Many of my pains, from several of my diseases, reside in my back. My endometriosis, fibromyalgia, and autoimmune arthritis all tend to find their way to my back and hips, making it very difficult to identify and evaluate the effectiveness of the medications for each disease.

Rheumatologist and gynecologist

You were likely referred to a rheumatologist for disease management if you were diagnosed with fibromyalgia. In which case, communication between your gynecologist and your rheumatologist is key. You need to be sure that there won’t be negative interactions between medications. In addition, they will be able to help you sort many of the symptoms that can feel like they overlap for endometriosis and fibromyalgia.

For me, very specific record keeping is key. I keep careful track of my pain (both areas and levels) which helps me to be able to pinpoint the causes and patterns of each disease and their progression. Because as we all know, endometriosis is about so much more than “bad period cramps”. Do you live with both? What tips would you share that you’ve learned about pain management?

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