Why isn’t fatigue considered a serious endometriosis symptom?

“During my GCSEs I was wiped out for three weeks with mysterious fatigue, which doctors assumed was a virus they couldn’t name or detect,” says 30-year-old Jessica, a writer and founder of ThisEndoLife. “No one ever knew what was wrong with me and didn’t seem very bothered by these issues, so I always just assumed I was a weak person.”

Jessica was diagnosed with endometriosis when she was 24 or 25, after first going to seek help at the age of 19, when she started experiencing pain during sex and extremely painful periods. However, she spent her entire teenage life with severe fatigue, bloating and IBS issues, without ever considering they could be linked to endometriosis.

Making the link between endo and fatigue

It was only years later, when her boyfriend came with her to the clinic, that she even got a referral for endometriosis. “Despite this, no one even considered fatigue as a factor in my symptoms, even though it was getting progressively worse over the years, and affecting my life,” says Jessica. “I think having the fatigue kick in so young made doctors not take me as seriously. I guess it was easier to dismiss it as stress from schoolwork.”

When it comes to endometriosis and fatigue, fatigue has always been considered a secondary symptom. Perhaps this is primarily because endometriosis is a disease that affects the reproductive organs. With the condition, the cells that normally line the womb grow elsewhere in the body, and still shed with your menstrual cycle. Unfortunately, with nowhere to go, this shedding simply remains in the body as scar tissue, causing intense pain, heavy periods, and, in some cases, infertility.

Fatigue isn’t just being tired. It’s like your entire life is put in slow motion or paused entirely. I was forgetting words, and forgetting tasks I was supposed to do.”

While these are all horrible, and dangerous, symptoms in themselves, overlooking the impact of fatigue and its relation to endometriosis can also be dangerous. “Even when I was diagnosed with endometriosis, no one explained the symptoms to me, no one said fatigue was part of this,” says Jessica. “It took a lot of research for me to discover that so many issues in my body were linked to endometriosis, especially the fatigue.”

For 33-year-old Jerrica, an assistant professor of biomedical sciences, however, fatigue was one of the first symptoms she actually went to her doctor for, despite first seeing other endometriosis symptoms at the age of 13, which were brushed off as typical period pains.

“When I was 24, I suddenly began falling asleep in the middle of the day and lacking the energy to do activities I had always done,” she says. “I was a very active person throughout high school and college, spending 6-10 hours a week at dance practices, then suddenly I couldn’t do it anymore.” While her doctor took her seriously, and did blood tests and a sleep study, it was never linked to her other symptoms: doctors just thought she was stressed.

Lack of awareness

Few studies have been done to determine the link between endometriosis and fatigue, perhaps more evidence that no one real considers it a “real” symptom. However, a new study has explored the extent of this link, and found that nearly everyone who has endometriosis has fatigue – and not just when they are menstruating.

The results – that 50.7 percent of women with endometriosis reported frequent fatigue, which remained true even after the researchers took other factors into account – suggest that fatigue is a stand-alone symptom of endometriosis.

Jessica definitely believes that the unfortunate lack of awareness about endometriosis among GPs is damaging. “As a result, they only know the very obvious and ‘directly’ related symptoms, such as pain in the pelvis or pain with sex,” she says. “The press are paying more attention to endometriosis these days, which is great, but they mainly want to hear stories about pain and infertility. It’s the same with doctors.”

“I’m 30 now, and while I’ve battled through and achieved a lot, I didn’t finish university, I left my first business, and I left three jobs all because of fatigue. It’s awful leaving a business you started because you can’t keep up with the pace or your team. That’s a very hard wound to heal.”

Jerrica also thinks part of the problem is that it is nearly impossible for healthy people to understand what fatigue really is, so people struggle to realise how damaging it is even if they try. “I have tried repeatedly to describe it as “permanently having the flu” or that “my body feels heavy all the time”, but healthy people are used to these symptoms being temporary and it is difficult to comprehend them as a permanent scenario,” she says.

Why can endometriosis cause fatigue?

Many reasons for fatigue being a symptom of endo have been posited, but none firmly established. One theory is that the inflammation caused by endometriosis damage to tissue, and therefore the activation of the immune system, might be involved in causing fatigue. Fatigue is a symptom of inflammatory diseases, which also would explain why endo patients experience chronic fatigue, as opposed to fatigue only when they are bleeding.

High occupational stress, and depression are also associated with frequent fatigue. As endometriosis patients have higher stress levels, their hypothalamic pituitary adrenal axis is altered. If you are chronically exposed to high stress levels, this can result in adrenal fatigue, which, again, could be an explanation for fatigue as a symptom of endometriosis.

Unfortunately, current treatment for endometriosis focuses predominantly on “classic” symptoms such as pain and infertility, rather than addressing fatigue. As there are psychological and pharmacological treatments used to treat fatigue in people suffering from other conditions, they may well be helpful too for those with endo.

How does chronic fatigue affect daily life?

Jessica thinks fatigue has been one of the hardest symptoms for her to stay on top of. “Fatigue isn’t just being tired. It’s like your entire life is put in slow motion or paused entirely. I was forgetting words, and forgetting tasks I was supposed to do,” she says. “My focus and cognitive ability was really going downhill as I battled with severe exhaustion.”

She adds that fatigue completely takes away your quality of life. “I’m 30 now, and while I’ve battled through and achieved a lot, I didn’t finish university, I left my first business, and I left three jobs all because of fatigue. It’s awful leaving a business you started because you can’t keep up with the pace or your team. That’s a very hard wound to heal.”

“There is so much planning when you have fatigue,” adds Jerrica. “Other people do activities until they are tired, then they sleep and wake up refreshed. I have to plan ahead to get through my day, my week, my month. It takes a lot of discipline and energy to manage.”

Eventually Jessica went freelance, and that, she says, was the beginning of her recovery from fatigue. She took a pay cut in doing so, but “it was either a pay cut or no job at all”. Jerrica, on the other hand, gave up most of her non-work activities, like dance, going out with friends, and dating, in order to maintain her demanding job. “I carefully budget my free time to include rest and recovery,” she says. “Even though I have had fatigue for years, only the people closest to me really seem to understand how it impacts my life.”

People need to be aware that fatigue is a key symptom of endometriosis, and one that needs to be treated as a symptom in its own right, as opposed to simply disregarding its impact. Chronic fatigue isn’t just “feeling tired” – it’s a crippling condition that drastically affects lives. It’s time that treatment for endometriosis takes this into account.

Featured image shows a woman sitting on a chair resting her head on it. Her back is to the photographer so you can’t see her face.

Page last updated July 2018