A ball pendulum shows a uterus ball hitting the rest, representing hand/mouth/eye then finally displacing the autoimmune ball at the end, representing a chain reaction.

Endometriosis and Autoimmune Diseases: Is There a Link?

I developed allergies when I was 33. Or, at least that's when I tested positive for them. A couple years after that, I started getting bloated from practically everything I ate. Around the same time, I started getting intermittent joint pain. Two of my knuckles would visibly swell and redden. Thankfully, an X-ray showed I didn't have arthritis or any permanent damage.

At 38, I started getting periodic bone and joint pain in my shins, elbows, hips, and ankles. My diaphragm cramps. And it gets worse the closer I am to my period and when I eat wheat. When I brought this up with my OB-GYN, she said maybe my pain was from an injury. (Even if they were all separate injuries, I'm pretty sure they shouldn't last for years.) I told my general practitioner that I felt like I was 100 sometimes. Her response: We all get aches and pains when we get older.

But I wondered: Am I celiac? Do I have an autoimmune disease? So I went to a gastroenterologist and a different GP to get some answers.

But first, what does the research show?

Endometriosis isn't considered an autoimmune disease. But people with endo are more likely to have one. Researchers from the United Kingdom, France, and the United States reviewed 26 studies to see if they could find an association. In June 2019, they published a report showing that four of those studies found a statistically significant relationship between systemic lupus erythematosus (SLE), Sjogren’s syndrome (SS), rheumatoid arthritis (RA), autoimmune thyroid disorder, celiac disease (CLD), multiple sclerosis (MS), inflammatory bowel disease (IBD), and Addison’s disease.1

Some studies showed that certain genes show up in people who have either RA or endo. There are also hormonal factors that increase the severity of both endo and autoimmune diseases like MS.1

What does the research mean?

As of now, doctors and researchers don't have a clear link between these two disorders. It could be that endometriosis affects the immune system, which leads to an autoimmune disorder. Or it could be the other way around.  Part of the problem is that both types of conditions can take years to diagnosis, making it impossible to know which came first.1

But if doctors find a relationship between autoimmune conditions and endometriosis, it could lead to new treatments. Instead of just using hormonal options — that come with terrible side effects like hot flashes, mood swings, and bone loss — immune-modulators could be used.1 It could open up a whole new way to treat endo.

It also means that your doctor should always consider the chance that you have a comorbid autoimmune condition if your symptoms line up. If you have endo, you have a higher chance of having another chronic condition. That includes pelvic inflammatory disease, uterine fibroids, allergies, asthma, migraines, fibromyalgia, and pelvic floor dysfunction.2-6

So, what did my tests show?

My blood showed no markers for rheumatoid arthritis, lupus, or high levels of inflammation (that last one was a real shock). I've lost some weight recently, so my gastroenterologist thought I might have celiac or another stomach problem. So he gave me an endoscopy: He put a camera in my stomach and upper small intestine, took some pictures, and grabbed some tissue samples. My stomach did show inflammation — technically called gastritis — but my biopsy was negative for celiac, cancer, and H. pylori (the bacteria that causes ulcers).

So in short, there's nothing wrong with me, as far as those tests show. On the one hand, I'm immensely relieved to hear these results. On the other, I'm still wondering, is there rogue endometriosis at play?

While I still have some questions, I did learn one very important thing. Wheat makes me feel horrible. Before a celiac test, you have to eat a lot of gluten. That way your stomach will show if you have an immune reaction. For about two weeks, I was in a flu-like haze. Based on my symptoms — worsening joint pain, brain fog, headache, fatigue, sneezing, runny eyes — my GI doctor said it's pretty clear I'm sensitive to wheat and gluten. And that I shouldn't eat large amounts of it.

And now that I've given up wheat, except for long-fermented sourdough bread, my joint pain is a lot better. Here's hoping may pain-free fingers stick around.

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