March is Endometriosis Awareness Month and this past week was National Sleep Awareness Week, so it seems a good time to remind readers that irritable bowel syndrome is not necessarily just about abdominal pain or discomfort, constipation, diarrhea, bloating, excess gas or any other commonly mentioned digestive symptom. As IBS Impact wrote on September 6. 2011, in a post that remains frequently viewed by blog visitors, many people with IBS also have one or more medical conditions known to commonly overlap with IBS and/or related non-gastrointestinal symptoms that may or may not indicate a specific diagnosable disorder.
For example, an article on the IFFGD website adapted from their Publication#207 by Ami Sperber, MD of Ben-Gurion University of the Negev in Israel, notes several additional overlapping conditions and cites the overlap with IBS and fibromyalgia to be around 35-70% and the percentage of people with chronic fatigue syndrome (also known as chronic fatigue immune dysfunction syndrome or myalgic encephalomyelitis), studied who also have irritable bowel syndrome ranges from 58-92% Also, in the December 2011 University of North Carolina Center for Functional GI and Motility Disorders “Evening with the Experts” online chat entitled, “Beyond the Bowel,” Olafur Palsson, PsyD, states that studies show that people with IBS report consistently higher numbers of non-GI symptoms compared to healthy controls, that about one-third of people with IBS report a significant number, and that they visit doctors about twice as often, mostly not for bowel complaints.
Endometriosis and sleep disturbances are just two of many conditions or symptoms that can coexist with the gastrointestinal symptoms of IBS in some affected people. Endometriosis is a disorder in which endometrial tissue, or the uterine lining, is found outside the uterus, frequently attached to other organs. As the tissue responds to the different stages of a woman or girl’s menstrual cycle in a similar way to the endometrium in the uterus, this can cause chronic pelvic pain, fatigue, painful menstruation, urination or intercourse, possible infertility, gastrointestinal disturbances and other symptoms. According to“Endometriosis and IBS” by the Gastrointestinal Society in Canada, endometriosis is frequently misdiagnosed as IBS or can coexist with IBS. The Endometriosis Association in the U.S. estimates that there are at least 6.3 million women and girls with endometriosis in the U.S. and 1 million in Canada, Endometriosis UK cites 1.5 million in the UK, Endometriosis New Zealand cites “more than one in 10” among secondary school girls, and the Endometriosis Association of Ireland cites 176 million worldwide. The Jean Hailes Foundation for Women’s Health also provides information on endometriosis in Australia, although no statistics for that country were readily found. Perhaps some readers of this blog will find useful information, support or assistance from these resources.
As for sleep disturbances in IBS, Dr. Sperber’s commentary linked above details some similar characteristics found among functional disorders like IBS. IBS is the most common functional disorder in the gastrointestinal category. According to him, those affected by this group of conditions frequently report poor quality of sleep, and objective research has shown evidence of fatigue and “non-restorative”sleep, meaning individuals not feeling rested despite having slept. In his video linked above, Dr. Palsson states that about 67% of people with IBS studied reported sleep difficulties of some sort. About.com IBS Guide, Barbara Bradley Bolen, PhD’s recent post for National Sleep Awareness Week links to some of her past discussions of sleep research and IBS and invites reader feedback in polls.
The IBS Impact founder is a person with IBS who happens to experience many non-GI symptoms apparently related to IBS, and has found resources to deal with them even more limited than those for IBS in general, cumulatively increasing the burden of IBS. Thus, from IBS Impact’s inception, we committed to increasing awareness of this less well-known aspect of IBS as well. IBS Impact urges people with IBS to report all symptoms to their health care providers, not just the well-known “textbook” ones. An overlapping diagnosis and treatment may be available. Even if this is not the case, some physicians may become more aware of the range of symptoms and issues that people with IBS may experience. IBS Impact also calls on clinicians and researchers to ask their patients about non-Rome criteria or extraintestinal symptoms, to design their studies and surveys in ways that accommodate such responses, and to strengthen their collaboration with researchers of overlapping conditions in order to accelerate better scientific answers, treatments and social supports for all who are affected by these often debilitating disorders.
For reputable resources for some overlapping conditions, please see the links page on the IBS Impact main website.