← Return to Gastrointestinal Concerns for EDS Patients

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@momcooker

Thank you for the information and we always want to get more. I have a milder case of EDS Type 3 but it's still painful with new things happening daily. For the past few years my lower abdomen distends during the day to make me actually look pregnant and my doctors have given me all the tests they can think of and come up with 'this is normal' for me. Well, I don't accept that and need information on how to combat this. Any ideas would be helpful. Thank you.

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Replies to "Thank you for the information and we always want to get more. I have a milder..."

Hi there- I feel the same way; I also have distention, along with early satiety and stomach cramping, with completely normal testing, and I’m fed up with not being provided with strategies. I understand “functional” GI disorders aren’t life-threatening and don’t produce an abnormal test, but it can still have a really negative effect on quality of life.

I don’t know if this would help or make things worse because it would raise more questions, but you may want to look into abdomino-phrenic dyssynergia. After I was told about it, I found a book called, “The Bloated Belly Whisperer.” It’s a cheesy name, but it’s by a GI dietician who specializes in you guessed it—bloating. She created the book because she found bloating/distention were persistent symptoms patients were coming in with but not getting much relief. It might be helpful as a starting point to for a conversation with your doctor, and it introduces some strategies for various conditions.

I just wanted to share that in case it helps, and to say you’re not the only one. It’s beyond frustrating.

In this condition, the diaphragm contracts instead of expanding to accommodate what you consume, leading to distention. But there’s not much research or many providers aware of it. Treatment options are learning different breathing techniques, pelvic floor PT, GI psychology or gut-directed hypnotherapy, or low doses of neuromodulators (i.e. SSRIs or antidepressants). There is a gut-directed hypnotherapy app you could get on your own, called Nerva.