Pelvic floor dysfunction related to autonomic issues?

[Don]

I have nerve damage to my pelvic floor causing spasticity.  It causes some issues for me.  I also have gastroparesis causing problems with my GI tract.  It’s a lose/lose situation.  I was just diagnosed with GP recently and am waiting to see my gastroenterologist.  I live an hour from Mayo Jacksonville.  Mayo did all my testing before.  I’m trying to go back.  My PCP said it’s treatable.  I’m just waiting on my referral.  Can anyone relate?  

[Guest KiminOrlando]

I don't have the pelvic floor issues, thank goodness, but I have the gastroparesis. My gastroenterologist in Orlando put me on Domperidone and I am 95% better. It changed my life. I used to not leave the house. If you don't get what you are looking for at Mayo (a lot of places won't use this med), let me know and I will get you the name of my gastroenterologist. I don't know if you would want to drive down to Orlando, but it might be a viable back up plan. 

Hope all goes well.

Kim

[StayAtHomeMom]

My sister in law has gastroparesis and she tried Reglan (bad reaction) but then her neurologist prescribed her a compounded medicine that her insurance only partially cover but helped her quite a bit. Her gastroparesis is pretty severe though. 

[Don]

On 7/10/2018 at 11:27 AM, KiminOrlando said:

I don't have the pelvic floor issues, thank goodness, but I have the gastroparesis. My gastroenterologist in Orlando put me on Domperidone and I am 95% better. It changed my life. I used to not leave the house. If you don't get what you are looking for at Mayo (a lot of places won't use this med), let me know and I will get you the name of my gastroenterologist. I don't know if you would want to drive down to Orlando, but it might be a viable back up plan. 

Hope all goes well.

Kim

Hi Kim.  Yeah the pelvic floor issues don’t create the most ideal situation.  But it’s manageable.  Mayo did a lot of testing on me before.  So they have all the records. I asked my neuro who diagnosed the GP to send me back there.  I’m afraid though with my insurance (military) that they’ll send me to the naval hospital.  I had surgery in the naval hospital to remove my thyroid in May.  I had complications from my autonomic neuropathy.  They told me that they don’t get many people like me.  It’s not a very big hospital like Bethesda or San Diego.  So I’m not sure if the naval hospital is equipped to deal with my disorder.  So I’m hoping I’m able to go back to Mayo.  

[WinterSown]

This is my worst problem. I go to PT for pelvic floor issues which has given me better muscular control. Next week I have another round of tests including swallowing a Smart Pill to track my motility. 

[Don]

40 minutes ago, WinterSown said:

This is my worst problem. I go to PT for pelvic floor issues which has given me better muscular control. Next week I have another round of tests including swallowing a Smart Pill to track my motility. 

 

I think I’ve had that done too.  Is it called a sitz marker test?  I had to swallow a pill and they took pictures as it traveled through my GI system to check motility.  I had it done years ago.  I also had a gastric emptying test for gastroparesis last year.  They didn’t think I had it at the time but my symptoms have worsened.  Neuro thinks I do have it.  I haven’t been to PT.  They offered but it was over an hour away from my house.  I don’t work due to disability.  But my wife does.  I stay home and take care of my kids.  So it’s hard for me to get there to PT several times a week.  Also being on disability I couldn’t afford it.  Do you also struggle with continence issues?  I hate it.  Due to my neuropathy I struggle with bladder and bowel.  It’s miserable.  I sometimes go to an incontinence forum but when I talk and ask about autonomic dysfunction I get no responses.  Nobody knows what I’m talking about.  I don’t feel welcome on places like that.  

[WinterSown]

They've only called it "The Smart Pill", I don't know if it has another name. If you can't travel to PT sometimes the  center can send out a therapist to work with you at home and give you a set of exercises that are manageable for you. In the meantime you can build up your strength by eating as best you can and eating foods rich in electrolytes. I've found if I keep up on that then my symptoms are much less intense. On bad days I do fall back to an IBS type diet and restrict myself to what I eat. I found some pelvic floor exercises for men on YT, obviously look first and try a little then build up. If you have limitations or concerns call your doctor about how to get yourself into a routine where you can start living your life again.