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bentley33 (@bentley33)

Exhausted from digestive conditions

Digestive Health | Last Active: Aug 3, 2019 | Replies (38)

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@bentley33

@eppie I feel your pain and frustration, that’s why I joined this group. Everyone on here is amazing! They are all fighting something and taking time to offer advice and give support. I honesty never thought I’d be here. You said you have PFD, I just started physical therapy for that and had an awful test done for it (I think) I don’t think it’s going to come back as something I have (not as bad as yours) but maybe some form of it.
And about the pain! OMG!!! You tell the doctors your in pain, they can see it, and when you get pain meds they blame you! At least that’s what happened at my last hospital stay 2 months ago. I literally say to them “ yep, I’m a doctor hopping pain pill seeker who loves these invasive procedures just to get a “fix”, give me a break!” Hardly anything touches the pain when it’s really bad. I get so upset when they assume things instead of doing their job! We all have these problems and don’t need to be judged by someone who’s never experienced anything like any of us have. I will be talking with my GI doctor after my next 2 tests to see about “ alternative pain meds” and I will be trying alternative help with my issues. Try everything! Then when it doesn’t work I like to shove it in their face (the mean docs anyway) and say see!!! Ugh!
Your attitude is great and it’s hard to always stay positive. This is part of my life and I’ve accepted it, but I keep trying to find ways to feel better. And take my good days and enjoy them. This site has really helped me, especially since I’ve been having some dark days. When I find something that actually helps me I will gladly share, until then, it’s more tests and emotional support to get thru them. And any emotional support I can give I sure will, because this not fun. Good luck

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Replies to "@eppie I feel your pain and frustration, that’s why I joined this group. Everyone on here..."

Hello @bentley33 and @eppie

I think you might both find this information from Mayo's website to be interesting. It is written information as well as videos for treating pelvic floor dysfunction, please take a look at the videos. How does this compare with the kind of treatments you have received?
https://www.mayoclinic.org/departments-centers/physical-medicine-rehabilitation/minnesota/services/pelvic-floor-dysfunction-program

I went to my first nutritionist appointment 2 days ago. I was sitting next to some lady who was seeing a different doctor for a completely different issue. We began chatting and when I said I was there to get help gaining weight she basically laughed in my face. She said and I quote "Seriously, there are people out there who are obese and struggling, whom have real health issues and can't lose weight. You're here to gain . Eat more?" If I weren't emotionally drained at that moment there would have been a cat fight.

I think one of the worst parts of this is the lack of sleep. This country is so concerned with the so called opioid epedemic danger from people who abuse, that people like us are suffering the consequences. The real danger is me running around in pain with no sleep and then getting in my car and driving. My parents, mom 76 and dad 81 both have serious problems. My father can't walk anymore without falling down half the time and my mother's spine is basically collapsed. They have to jump through hoops to get their pain medication. They were told that they weren't even allowed to be on the same pain meds. No household can have more than one person taking the same drug.

I too shall share advice on things I've tried and will try along the way. And if there's anybody out there who lives in the NY vacinity, I would love a face to face, if possible. There's just so much sharing I can do with people whom can sympathize but not empathize, and truly, I know deep down they really don't want to talk about it. No judgment just a fact.

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