The Intersectionality Between Endo and Ehlers Danlos Syndrome

Since my diagnosis of Ehlers Danlos Syndrome (EDS) over a year and a half ago, I began to notice something. Many other women I became acquainted with through both online and in-person EDS support groups also had diagnoses of endometriosis. It made me wonder if that was more than pure coincidence and, if so, what the connection was between the two disorders.

What is EDS?

For those not familiar with EDS, it is a connective tissue disorder- meaning that there is a deficiency of collagen. Because connective tissue is what helps keep bones and joints in place, it means that those with EDS tend to be prone to injuries such as strains, sprains, and dislocations, as well as disc and cartilage damage. There are several different types of EDS, but I have the most common one: hypermobility. This means while I may have been gifted at yoga in terms of pretzeling my body into impressive positions most cannot accomplish, I also have a lot of spinal and hip damage more common to someone several decades older than I am. It also means that I suffer from a lot of chronic pain, especially as my muscles often go into spasm and tighten up because they are overcompensating for my lack of sufficient connective tissue.

How does this relate to endo?

From what I have found from doing a bit of Googling, a study as far back as 1995 that surveyed 41 women with EDS found over a quarter of them (27%) also had a diagnosis of endometriosis- much higher than an average sample.¹ Not only that, 44% of the women had also had a hysterectomy and 59% had complaints of incontinence. Similarly, a 1994 surveyed 68 women, finding the rate of endometriosis to be only 15.8%; however, other gynecological issues such as sexual dysfunction and irregular menses were found to be much higher: 61% and 28%, respectively.²

Recent research

A 2012-2014 study with a much larger survey sample of 386 women who had a diagnosis of hypermobility-type EDS (known as “hEDS”) concluded that “Endometriosis was not highly prevalent in this population”.³ However, 76% of the hEDS patients suffered from menorrhagia (which means very heavy bleeding during menstruation) and 72% from dysmenorrhea, which is the medical term for painful periods.³ I have some caveats with this study, though, because it does not clarify whether the women involved in the survey had the laparoscopic surgeries to definitively rule out endometriosis as a diagnosis that may be culpable for their heavy and painful periods. In fact, the study concludes that “Increased awareness of the gynecological symptomatology in women with hEDS can help discriminate between endometriosis and thus prevent useless, and potentially dangerous, surgery”.³

It seems that this recent study is simply attributing heavy and painful periods to hEDS and prescribing against a laparoscopy as “useless” and even “dangerous”. I think if a woman with hEDS has persistently painful and heavy periods that are compromising her quality of life, it is within her interest to explore endometriosis as a possible reason, and have the option of a lap surgery available to her (which is a relatively minor and safe surgery, usually performed on an outpatient basis) to make that determination. Overall, since endometriosis is underdiagnosed, I believe this study may be (potentially significantly) underestimating how many women in their survey might actually have endo.

As noted by another recent study of 775 reproductive-age women with EDS that was published in 2014, rates of endometriosis among them were 44% - much higher than the general population - casting further doubt for me on the conclusions of the previous study.⁴

What's the connection?

This begs the question as to why there seems to be a high intersectionality of women who have EDS and those who suffer from painful and heavy periods- and more specifically, endometriosis. Well, connective tissue also helps keep organs and muscles in place, and it’s been noted that those with EDS also suffer from complications to their organs, including pelvic organs- which is why so many EDS patients suffer from gastro-intestinal disorders such as irritable bowel syndrome, gastro-esophageal geflux disease, and interstitial cystitis. It would follow then that those with hEDS might also suffer complications related to their reproductive organs, such as their uterus and ovaries, and thus might poentially be more susceptible to developing endometriosis.

If you have endometriosis and other health issues and also exhibit hypermobility, you may want to see a seasoned and knowledgeable geneticist to rule out EDS.