Is Endometriosis an Autoimmune Disease?

By Dr. Kenosha Gleaton, OBGYN

Endometriosis is a chronic condition that doesn’t have a cure and can sometimes get worse with time. This may sound similar to some autoimmune conditions, but it’s not technically considered an autoimmune disease. Let’s take a closer look. 

What is endometriosis?

Endometriosis is a chronic gynecological condition that involves uterine tissue. Normally uterine tissue stays within the uterus, but in people with endometriosis, uterine tissue grows and spreads into other areas of the body. [1] Even though this tissue (also referred to as implants) has moved outside of the uterus, the tissue can still become inflamed and bleed, causing pain and abnormal bleeding in between periods. Implants have been found in various parts of the body, including the bladder, ovaries, rectum, and upper abdomen. [1] 

There are a few different stages or degrees of endometriosis, ranging from smaller implants to deep infiltrative endometriosis that invades the organs and causes significant scarring. It’s estimated that up to 15% of females have endometriosis, although there are some cases that are asymptomatic and can go undetected. [1] Learn about the difference between PCOS and endometriosis. 

Symptoms of endometriosis

Endometriosis may not cause any symptoms at all, or could lead to symptoms such as extremely heavy and debilitating periods. Endometriosis can feel like sharp, stabbing, or throbbing pain while urinating or defecating, pain during sex, pelvic pain during menstruation, back pain, abnormal bleeding, and infertility. [1] Pain may be happening all the time, may happen cyclically, or may get worse over time. 

What causes endometriosis?

The exact cause of endometriosis is unknown. There are some factors that put you at a higher risk for endometriosis, such as having a first-degree relative with endometriosis, having short menstrual cycles, heavy menstrual periods, problems with fertility, and a young first age of menarche (your first period). [2] While inconclusive, there have been some associations between autoimmune diseases and endometriosis, prompting many to question if endometriosis is considered an autoimmune disease. [3] 

What is an autoimmune disease?

The immune system is a complex network of cells and organs that work to defend the body from germs and foreign invaders. In simpler terms, our immune system helps protect us from getting sick. An autoimmune disease is a condition characterized by the immune system attacking healthy cells, tissues, and organs, rather than germs. There are over 80 autoimmune diseases that we know of, impacting over 24 million people in the United States. [4] Some well known autoimmune diseases include type 1 diabetes, lupus, rheumatoid arthritis, and multiple sclerosis. Unfortunately there is no clear cause for autoimmune diseases, but we do know that genetics, environmental exposure, and demographics may play a role in the likelihood of someone developing an autoimmune disease. [4] 

Symptoms of autoimmune conditions

How do you know if you have an autoimmune disease? The systems can either overlap or vary widely depending on the condition, making it difficult to pinpoint some diseases. Getting a diagnosis isn’t always easy, which is why advocating for yourself is so important. Potential symptoms include [5]:

• Fatigue
• Itchy skin
• Hair loss
• Infertility
• Abdominal bloating
• Pain
• Weight fluctuations
• Abnormal menstrual cycles
• Constipation or diarrhea
• Muscle aches
• Swelling

There are many other symptoms that may be associated with various autoimmune diseases. If you do have any concerning symptoms, be sure to speak with a healthcare provider. Other tips for narrowing down an autoimmune condition include a detailed family history, consulting medical specialists, getting multiple opinions, testing for abnormal hormone levels, and recording all symptoms. [5] 

Is endometriosis considered an autoimmune disease?

Endometriosis is not officially considered an autoimmune disease, however data does suggest that there may be an association. [6-9] The inflammation caused by endometriosis is an immune response, and new studies are now focusing on altering the natural immune response as a way to combat endometriosis pain and slow the progression of endometriosis. [6] Multiple studies and reviews have found correlations between endometriosis and various autoimmune diseases, including Hasimoto’s, lupus, rheumatoid arthritis, celiac disease, inflammatory bowel disease, and more. [7-9] Some have suggested that the inflammation caused by endometriosis impacts the immune system, potentially leading to autoimmune conditions or deficient immune responses. [9]

Even though potential links between the immune system and endometriosis have been found, we don’t have enough evidence to conclude that endometriosis is or will lead to an autoimmune disease. 

Associated conditions of endometriosis

While we can’t officially link endometriosis to autoimmune conditions, we do know of a few different associated conditions. Those with endometriosis have an increased risk of other gynecological conditions or infections, including vaginal infections and pelvic inflammatory disease. [10] A few studies also found that endometriosis may make someone more susceptible to asthma and allergic manifestations, such as food sensitivities, hay fever, and eczema. [3] 

Having endometriosis does not mean you will definitely have other conditions or problems arise, however you may be at an increased risk. Speak with a healthcare provider if you’re concerned about any comorbidities. Learn more about Endometriosis and its Effect on Fertility and Pregnancy.

Treatments 

Currently there are no cures for autoimmune diseases or endometriosis, but there are treatments and ways to manage symptoms. 

Treating and managing autoimmune diseases

Treating and managing autoimmune diseases varies greatly depending on the condition and symptoms. Managing symptoms can be done through painkillers, anti-inflammatories, sleeping medications, insulin injections, rash creams, and more. [11] Sometimes drugs are prescribed that help to suppress the immune system. 

Treating and managing endometriosis

Endometriosis treatment can also vary depending on symptoms and is broadly categorized into two categories: pharmacological and surgical. [1] There are no medications currently available that completely stop the growth and progress of the disease, but some agents can be used to alleviate symptoms and aid in fertility. Hormonal medications are sometimes used to inhibit follicular development, ovulation, endometriosis symptoms, and can even help atrophy some of the implants. [1] 

Surgical treatment is sometimes used as a management option, but can be more risky than pharmacological treatments. Surgical treatment may be more helpful for those attempting to conceive, as the implants can be surgically removed. [1] This isn’t a permanent option and implants can grow back over time. Surgery is also not recommended as first-line treatment for those with deep scarring or infiltrative endometriosis. You should speak to your healthcare provider to learn about the best treatment options. In the meantime, check out these self-care tips for endometriosis. 

Important takeaways

Endometriosis is a chronic gynecological condition seen in approximately 10% to 15% of females of reproductive age. [1] Endometriosis causes uterine tissue to grow outside of the uterus, potentially causing chronic pain, abnormal bleeding or spotting, infertility, and more. Autoimmune diseases are conditions in which the immune system attacks healthy cells or organs. There are over 80 types of autoimmune diseases that can vary greatly. [4] Currently endometriosis is not considered an autoimmune disease. We do know that the immune system plays a role in endometriosis through inflammation, and that those with endometriosis may have an increased risk of developing autoimmune diseases. [6-9] Treating endometriosis and autoimmune conditions is done through various surgical procedures, medications, and lifestyle changes. Anyone living with endometriosis or an autoimmune disorder should speak to their healthcare provider about what treatment is right for them. 

References:

1. Tsamantioti ES, Mahdy H. Endometriosis. [Updated 2023 Jan 23]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK567777/
2. What are the risk factors for endometriosis? National Institutes of Health. Office of Communications. January 28 2022. URL. 
3. Kvaskoff M. Endometriosis and co-morbidities. Endometriosis.org. Accessed May 3 2023. URL. 
4. Autoimmune diseases. National Institute of Environmental Health Sciences. May 31 2022. URL. 
5. Goldmuntz E, Penn A. Autoimmune diseases. Office on Women’s Health. February 22 2021. URL. 
6. Donnez J, Cacciottola L. Endometriosis: An Inflammatory Disease That Requires New Therapeutic Options. Int J Mol Sci. 2022;23(3):1518. Published 2022 Jan 28. doi:10.3390/ijms23031518
7. Porpora MG, Scaramuzzino S, Sangiuliano C, et al. High prevalence of autoimmune diseases in women with endometriosis: a case-control study. Gynecol Endocrinol. 2020;36(4):356-359. doi:10.1080/09513590.2019.1655727
8. Shigesi N, Kvaskoff M, Kirtley S, et al. The association between endometriosis and autoimmune diseases: a systematic review and meta-analysis. Hum Reprod Update. 2019;25(4):486-503. doi:10.1093/humupd/dmz014
9. Kvaskoff M, Mu F, Terry KL, et al. Endometriosis: a high-risk population for major chronic diseases?. Hum Reprod Update. 2015;21(4):500-516. doi:10.1093/humupd/dmv013
10. Koninckx PR, Ussia A, Tahlak M, et al. Infection as a potential cofactor in the genetic-epigenetic pathophysiology of endometriosis: a systematic review. Facts Views Vis Obgyn. 2019;11(3):209-216.
11. Autoimmune Diseases. Cleveland Clinic. July 21 2021. URL.