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Pelvic nerve disorder? / What is this migrating pain?

abdominal pain left-side left side lhs chronic pain

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#1 twonK

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Posted 01 September 2016 - 12:47 PM

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anyone care to guess what this might be?

  • diagnosed IBS-C but there's more than that going on
  • started 20 years ago with intense bloating, discomfort and C (constipation) all over the abdomen
  • over the last 1-2 years it's progressed / changed into outright pain, sometimes very clearly separate from the "IBS pain"
  • over the last few months it's become a strong, deep pain often situated 2" left and south of my navel (belly button). But it also often in other locations or just all over my abdomen
  • over the last few weeks, I'm getting a light burning/itching feeling closer to the skin over my left pelvic bone
  • I often have extreme hot flushes and burn-up very quickly, only for it to rapidly traverse into outright deep pain
  • I often feel "chemically" fatigued suddenly, like every joule of energy has been suddenly removed from my system
  • a BM or passing gas can instantly relieve or cause severe pain, exhaustion or hot flushes
  • I've had all the IBS look-alike tests done, all negative
  • all 'oscopies report "pristine" bowel (only a doctor could say that about a bowel...)
  • pill cam was clean
  • most recent doc thought I might have 1 or 2 hernias. As such I had a hernia repair op on Monday but they found nothing. Again, everything looked "pristine". No hernias, no adhesions.
  • my GI transit time is good but it all grinds to a halt at the very end
  • I have poor pelvic floor function but bowel retraining / feedback therapy didn't help
  • I'm taking oxycodone and CBD drinks for the pain but it's a losing battle. I'm really, really desperate for some relief. 

 

So given my physical clean work-up, I'm leaning towards some weird nerve disorder? Anyone have any suggestions whatsoever? All my doctors are completely stumped. As are all the doctors I've seen over the last 20 years.

 

Pete


Meds: Provigil, Lexapro, Wellbutrin, others

Current: IBS-C, OCD, Refractory Depression for 20+ years

Fixed: Hydronephrosis, Bilateral compartment syndrome


#2 annie7

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Posted 01 September 2016 - 01:14 PM

Hi Pete   so sorry for all your ongoing pain and misery.  you have suffered so much and for so long. 

 

all i can think of is--have you read the book "A Headache in the Pelvis"?  i've seen it recommended a lot to people with chronic pelvic pain.  

 

      https://www.amazon.c...d/dp/0972775552

 

and there are similar books like it.  not sure if this would be helpful to you or not.  and yes, it does sound like some sort of nerve disorder.  or maybe a trigger point thing.

 

any chance you could go to some place like the mayo clinic, cleveland clinic etc? 

 

i do hope that somehow you can manage to find some relief.   take good care.


these are just my own thoughts. for expert medical advice please contact a health care professional.


#3 jaumeb

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Posted 01 September 2016 - 02:32 PM

I am also trying to work on this from the "D" side. It can be approached from different sides: diet, supps, antidepressants, relaxation, psychosomatic, stretching, myofascial release, ... No definitive answers yet, though.

#4 twonK

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Posted 05 September 2016 - 01:16 PM

Hi Pete   so sorry for all your ongoing pain and misery.  you have suffered so much and for so long. 

 

all i can think of is--have you read the book "A Headache in the Pelvis"?  i've seen it recommended a lot to people with chronic pelvic pain.  

 

      https://www.amazon.c...d/dp/0972775552

 

and there are similar books like it.  not sure if this would be helpful to you or not.  and yes, it does sound like some sort of nerve disorder.  or maybe a trigger point thing.

 

any chance you could go to some place like the mayo clinic, cleveland clinic etc? 

 

i do hope that somehow you can manage to find some relief.   take good care.

 

Hey Annie, thanks as always for the reply. I checked that book out and it's pretty controversial. Learning more is a good idea though so I'll def get a book on pelvic pain.

 

I tried getting into the Mayo and was all set to go and at the last minute found out that they won't admit people who are on opiate painkillers. I was pretty destroyed. I'm taking another run at them.

 

Hope you're not doing too badly,

Pete


Meds: Provigil, Lexapro, Wellbutrin, others

Current: IBS-C, OCD, Refractory Depression for 20+ years

Fixed: Hydronephrosis, Bilateral compartment syndrome


#5 twonK

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Posted 05 September 2016 - 01:16 PM

I am also trying to work on this from the "D" side. It can be approached from different sides: diet, supps, antidepressants, relaxation, psychosomatic, stretching, myofascial release, ... No definitive answers yet, though.

 

yep tried all of that. If you find some relief, please post it.


Meds: Provigil, Lexapro, Wellbutrin, others

Current: IBS-C, OCD, Refractory Depression for 20+ years

Fixed: Hydronephrosis, Bilateral compartment syndrome


#6 annie7

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Posted 05 September 2016 - 01:31 PM

oh no--mayo won't admit people on opiate pain killers???  for heavens sakes why, i wonder.  did they say??   i wonder if it has something to do with all the news lately about opiods and the FDA cracking down on things etc  unsure.png  


these are just my own thoughts. for expert medical advice please contact a health care professional.


#7 twonK

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Posted 05 September 2016 - 01:44 PM

I know. Talk about kicking someone when they're already down. It does make sense for the motility clinic though since opiates kill motility. Ugh.


Meds: Provigil, Lexapro, Wellbutrin, others

Current: IBS-C, OCD, Refractory Depression for 20+ years

Fixed: Hydronephrosis, Bilateral compartment syndrome


#8 annie7

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Posted 05 September 2016 - 02:46 PM

yes, you're right about both--kicking someone when they're already down and opiates killing motility.  

 

if you think the opiates are adversely affecting your motility, there are a couple of meds out there --relistor and movantik--that counteract that effect while still allowing the opiods to work as painkillers.  they are really expensive though since they are fairly new and there's no generic.  

 

anyway--i hope your second run at Mayo works out...were you going in for the motility clinic or to get checked out and get a diagnosis?  really, i think that if you're going in there for a diagnosis and not for help with motility problems, they really should let you in--just IMHO of course.  after all, what's a person with chronic pain supposed to do? i would imagine they have a lot of applicants with chronic pain and on opiods who are looking, as you are, for a diagnosis and help...(i'd better stop before i go on a rant here)


these are just my own thoughts. for expert medical advice please contact a health care professional.






Also tagged with one or more of these keywords: abdominal pain, left-side, left side, lhs, chronic pain


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