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I have pelvic dyssenergia. Does anyone else have that?

Posted by ltarashuk @ltarashuk, Apr 15 10:11am

Hi,
I have CIC but also have pelvic dyssenergia. Does anyone else have that? I have been to pelvic floor PT but still can’t evacuate completely. Wonder if anyone has any suggestions. Thank you

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celia16 | @celia16 | Apr 21 6:38pm
In reply to @jlstjohn "I do not know how it works at Mayo as far as seeing PT, I actually..." + (show)
Profile picture for jlstjohn @jlstjohn

I do not know how it works at Mayo as far as seeing PT, I actually do the majority of my health care elsewhere.

The wand has 2 ends, one for vaginal insertion and one for rectal, so it can be used for either. The company I bought mine from (Intkmate Rose) has great tutorial videos on YouTube. I have only used the rectal route. I will also feel that things need to come out but will not, but after I use the wand (sometimes for a very short time, even as short as a minute) I will have a movement.

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I can relate. I already have something similar, but will order a new one. Thanks!

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ltarashuk | @ltarashuk | Apr 21 7:03pm
In reply to @jlstjohn "I actually have somewhat of a predictable pattern with my bowel movements, where I get into..." + (show)
Profile picture for jlstjohn @jlstjohn

I actually have somewhat of a predictable pattern with my bowel movements, where I get into trouble is in the afternoon and know it is best if I can be home then. I know, I wish the doctors would further explain how someone who has primarily diarrhea can have a moderate to large stool burden. They usually just tell me to do a home Miralax clean out. Oh, by the way, I take my Miralax dose all at once in the morning, I am currently on 4 capful daily. I tolerate it fine taking it all at once, but I know everyone is different.

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Thank you very much. I like the idea of doing it all at once.. I wish there was a way to not have to live with diarrhea daily.

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aznelson2426 | @aznelson2426 | Jul 17 10:06am
In reply to @ltarashuk "Hi, I went years before being diagnosed. After my 3rd GI doctor, I was sent for..." + (show)
Profile picture for ltarashuk @ltarashuk

Hi, I went years before being diagnosed. After my 3rd GI doctor, I was sent for anorectol manometry testing and balloon expulsion testing which confirmed the diagnosis. I went years with constipation and fecal incontinence before diagnosis. I now have control over the incontinence.

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What solutions did they provide that worked for you? I went somewhere and they suggested pelvic floor therapy, not sure if that will be enough

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jlstjohn | @jlstjohn | Jul 20 6:10am

I use a pelvic wand from a company called Intimate Rose, which has been very helpful. My PT recommended it. They have great videos on YouTube that guide you how to use it.

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ltarashuk | @ltarashuk | Jul 21 10:22am

Hi I have both CIC and pelvic floor dyssenergia. I did 3 months of pelvic floor PT with biofeedback. It has helped a lot. I use rectal dilators daily to both strengthen and relax the pelvic floor in addition to daily exercises. I take psyllium and a half cap of MiraLAX daily. I have very soft bm and have multiple bm a day but it’s better than being constipated or like I was before taking so many laxatives and in the bathroom with diarrhea all day long. Hope the PT helps you.

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maggie1942 | @maggie1942 | Jul 21 10:23am

I do not have an issue with urination but am not able to empty my rectum. I have found a set of exercises on YouTube by Dr. Jo which have helped me start to be able to expel stool. They are not easy and have to be done correctly.

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maggie1942 | @maggie1942 | Jul 21 10:27am

Where can you get a rectal dialator? Never heard of it but am willing to try anything other than a finger which is actually talked about in Mayo Digestive health. Very good book by the way.

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aznelson2426 | @aznelson2426 | Jul 23 6:25am
In reply to @maggie1942 "I do not have an issue with urination but am not able to empty my rectum...." + (show)
Profile picture for maggie1942 @maggie1942

I do not have an issue with urination but am not able to empty my rectum. I have found a set of exercises on YouTube by Dr. Jo which have helped me start to be able to expel stool. They are not easy and have to be done correctly.

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Do you have a link to the YouTube videos?

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maggie1942 | @maggie1942 | Jul 23 8:24am
In reply to @aznelson2426 "Do you have a link to the YouTube videos?" + (show)
Profile picture for aznelson2426 @aznelson2426

Do you have a link to the YouTube videos?

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I am functionally blind so I do not know how to do a link. I just go to YouTube and under search I enter Pelvic Floow Disorder Dr. Jo and her videos come up. I like the one with 5 exercises but only do the first three. You really have to concentrate to go deep into the pelvis but they are starting to work. Good luck!

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