Please note, this is my personal experience of living with Ehlers Danlos Syndrome, the treatments and path to diagnosis and should therefore not be taken as medical advice.I am aware that some complaints are only indirect EDS symptoms but these also contribute to the overall picture and my experience with the condition, EDS.
Quotes and links are freely available information from the internet and not verified. These, and my experiences, are not intended as an alternative to medical advice.
Stomach and intestinal complaints are the most disabling complaints for many EDS patients. Connective tissue is present everywhere in the body and therefore also in our digestive system. If food is not absorbed properly, this affects our entire body. Connective tissue is also present around the nerve endings of the digestive system and can therefore be extra sensitive, or transmit signals incorrectly.
Sensitivity of the intestines was always an issue but as with many EDS issues, at first i thought i just had a sensitivity for certain food. Some just take longer to digest than others and that seemed normal. As a child and adolescent digestion was troublesome, it took much of my energy and after eating i needed rest. As an adult this became less of an issue though i was still tired after eating, and slow digestion meant that I felt full after eating for quite a long time. I guess this was one of the reasons i was very thin up to my 40th.
My EDS related pelvic floor issues, affects my bladder, prostate and scrotum and pain in this area was and is omnipresent. Bladder pain is dominant here and displaces the sensitivity of the intestines.
This results in me not being able to perceive the urge and bowel movements properly. The urge comes suddenly and I only have a few minutes to reach the toilet before my bowel becomes active. It is difficult for me to activate my bowels and initiate bowel movements, so I am dependent on toilets nearby. Fortunately, my bowels are still somewhat predictable so accidents are rare and it allows me to plan my activity more or less normally.
Beside intestine issues I have also been suffering from reflux for a while. At first I thought that food had not gone down well. But then it happened more often and realised it was not food related but part of my EDS symptoms. Reflux usually happens when my body is relaxed, like when trying to sleep. Stomach acid does not come up in bursts, but it seems as if my esophagus is open at these times. That gas and stomach acid can freely rise from my stomach. This is very unpleasant and disturbing. It often keeps me awake and is a very annoying aspect of EDS that gets worse over time.
Living with Ehlers Danlos Syndrome 