Hi
Thx for the response and telling me about your experience..The use of laxatives is so unpredictable and the results can sure aggravate the pain as you described. I found lately that using Phillips Caplets has worked better than the prescribed meds. If one is really constipated, then the Milk of Magnesia liquid seems to work well (but be careful, it can work too well!). The Caplets are milder. It's just always a guess as to how much to use daily.
My intrathecal pain pump (which doesn't help too much) for various reasons, yet I still get the side effect,
I want to discuss other options with my pain doctor at our next visit.
I was given the Butrans patch a few years back, prior to my pain pump.. My issues were a little different then,
and the doctor who Rx'd it was not a pain doc, so it's possible the dosage was wrong.
Anyway it's worth a try now that I have a pain doctor.
Thanks again and I'm glad you've found some pain relief without the dreaded side effect!
HElp me please.
Re: HElp me please.
Hi everyone
Just wanted to update u and also see if anyone had success with anal rectal pain issues and or if they the urge to have a BM... and were able to ignore it or get rid of it
I get it after every meal .... or even snack.
I have a pain pump with 2.7 mg of Dilaudid and about 7 Mg of Bupivicaine.. a decent dose, but compared to the high doses that some of my pump nurse's other patients are on, this is comparatively low. I was also on a much higher dose of Bupivicane 2 years ago (along with 2 other meds) but didn't have the "urge "issue then.
I did see 2 colo-rectal surgeons...One was awful. When I mentioned pelvic pain,..etc.. she said I don't treat" Those" types of patients and practically pushed me out the door.
She did give me a quick rectal exam (humiliating!) and said all looked fine.
She was extremely rude.
I then tried another local colo-rectal doctor. She was better in her manner but again lacked knowledge of pelvic pain issues relating to rectal pain.. and was a bit dismissive.
Another waste of time.
Maybe it's the area. I Iive in NJ - 25 miles from NYC, but in over 10 years of pain/dysfunction in varying ways ,I've yet to find a doc who truly gets pelvic pain.
Dr Deb Coady is very kind and wanted to help but was unsuccessful..she is also now retired and doing research on this issue .She wrote a book called "Healing sexual Pain"
I think that out West states like Colorado or CA...they are a bit more advance in pelvic pain management and resolution IMHO..from my research, etc.
In my case, I believe at least part of my problem is "somatic". a hyper-stimulated nervous system from years of not sitting normally.. Now my system sees any type of kneeling sitting as painful.
The same with the 'urge' sensation Ive described incessantly! .It started slowly with' urge' to poop only later in the day, now it's after every bite of food!
I checked with my PT whom I trust very much.. She is highly trained and has answered any question Ive given her intelligently . Ive also made progress (tho slow) in the time Ive been seeing her. She believes I can get well, She insists that she would be able to note any type of rectal prolapse and that there is nothing there!
Her knowledge of the anatomy is impressive..I also saw a highly respected NYC PT prior to seeing mine and she found no evidence either...She almost laughed and said ...Believe me a rectocele/prolapse is not causing your issues!
That brings me back to a hyperactive nervous system a somatic issue..Ie the body/mind expects things to occur (like the urge feeling) so they do...?
I have been speaking to a counselor about this for a few months.. and have delved into things, but my issues still happen.
I wish Icould just say "I don't care" and just move on!
Anyone had a problem like me with their nervous system? etc. could you pls respond
Thx for listening!
Just wanted to update u and also see if anyone had success with anal rectal pain issues and or if they the urge to have a BM... and were able to ignore it or get rid of it
I get it after every meal .... or even snack.
I have a pain pump with 2.7 mg of Dilaudid and about 7 Mg of Bupivicaine.. a decent dose, but compared to the high doses that some of my pump nurse's other patients are on, this is comparatively low. I was also on a much higher dose of Bupivicane 2 years ago (along with 2 other meds) but didn't have the "urge "issue then.
I did see 2 colo-rectal surgeons...One was awful. When I mentioned pelvic pain,..etc.. she said I don't treat" Those" types of patients and practically pushed me out the door.
She did give me a quick rectal exam (humiliating!) and said all looked fine.
She was extremely rude.
I then tried another local colo-rectal doctor. She was better in her manner but again lacked knowledge of pelvic pain issues relating to rectal pain.. and was a bit dismissive.
Another waste of time.
Maybe it's the area. I Iive in NJ - 25 miles from NYC, but in over 10 years of pain/dysfunction in varying ways ,I've yet to find a doc who truly gets pelvic pain.
Dr Deb Coady is very kind and wanted to help but was unsuccessful..she is also now retired and doing research on this issue .She wrote a book called "Healing sexual Pain"
I think that out West states like Colorado or CA...they are a bit more advance in pelvic pain management and resolution IMHO..from my research, etc.
In my case, I believe at least part of my problem is "somatic". a hyper-stimulated nervous system from years of not sitting normally.. Now my system sees any type of kneeling sitting as painful.
The same with the 'urge' sensation Ive described incessantly! .It started slowly with' urge' to poop only later in the day, now it's after every bite of food!
I checked with my PT whom I trust very much.. She is highly trained and has answered any question Ive given her intelligently . Ive also made progress (tho slow) in the time Ive been seeing her. She believes I can get well, She insists that she would be able to note any type of rectal prolapse and that there is nothing there!
Her knowledge of the anatomy is impressive..I also saw a highly respected NYC PT prior to seeing mine and she found no evidence either...She almost laughed and said ...Believe me a rectocele/prolapse is not causing your issues!
That brings me back to a hyperactive nervous system a somatic issue..Ie the body/mind expects things to occur (like the urge feeling) so they do...?
I have been speaking to a counselor about this for a few months.. and have delved into things, but my issues still happen.
I wish Icould just say "I don't care" and just move on!
Anyone had a problem like me with their nervous system? etc. could you pls respond
Thx for listening!
Re: HElp me please.
Kathy, I had a hyperstimulated nervous system when I was going through the worst of PNE. I don't know...maybe it's called central nervous system wind-up. Just hearing the phone ring made me jump. Now that the pain is mostly gone I don't have that problem anymore.
I've been to some rude doctors too. I saw one neurologist who said she doesn't treat nerve problems. Go figure...
I think you are on the right track with a good PT and counselor who are helping you get the nervous system calmed down. Have you ever considered water therapy?
Violet
I've been to some rude doctors too. I saw one neurologist who said she doesn't treat nerve problems. Go figure...
I think you are on the right track with a good PT and counselor who are helping you get the nervous system calmed down. Have you ever considered water therapy? Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: HElp me please.
Thx Violet,
Because the various physical interventions failed, and for all the reasons I described, I agree that I have central nervous system windup ... from too many years of pain,..
for whatever reason the pain is occuring.
My PT knows me so well.. My counselor, a Pelvic pain specialist agrees. I must get my CNS to calm down... etc.
The challenge is how do I do it and unlearn, all the things I've researched for a decade...which I believe had a big part in revving up pain that shouldn't be there.
I have an old counselor I talked to a few years ago, and didn't have much success with .. but she too knows me well.
When she is available..she may be a resource.
Does anyone know of ways to calm your CNS ? That 's the key for me.
BTW. Violet your neurologist sounded like the ones saw! LOL! Jeez! Go figure!
What is water therapy? Is that water walking?. That is something my Pt suggested for me awhile back, but I had some logistic problems getting to the pool.
Thanks!
Because the various physical interventions failed, and for all the reasons I described, I agree that I have central nervous system windup ... from too many years of pain,..
for whatever reason the pain is occuring.
My PT knows me so well.. My counselor, a Pelvic pain specialist agrees. I must get my CNS to calm down... etc.
The challenge is how do I do it and unlearn, all the things I've researched for a decade...which I believe had a big part in revving up pain that shouldn't be there.
I have an old counselor I talked to a few years ago, and didn't have much success with .. but she too knows me well.
When she is available..she may be a resource.
Does anyone know of ways to calm your CNS ? That 's the key for me.
BTW. Violet your neurologist sounded like the ones saw! LOL! Jeez! Go figure!
What is water therapy? Is that water walking?. That is something my Pt suggested for me awhile back, but I had some logistic problems getting to the pool.
Thanks!
Re: HElp me please.
Kathy, there are multiple therapies you might want to consider that aren't your standard go sit and talk with someone. Recently, a Functional Medicine Doctor I've just started to see suggested a method called HeartMath. Their website is HeartMath.org. It is a biofeedback technique that works with breathing and heart rate. It decreases the overactive sympathetic nervous system and increases the parasympathetic nervous system. Youtube has some videos that describe the technique so you can practice with just the breathing. Use the search term HeartMath Coherence and Cardiace Coherence. Plus the company website where you can purchase the unit has some videos and research papers.
There are also therapists that specialize in Cognitive Behavioral Therapy, EMDR and Heart Integration.
There are also alternative therapies like Reiki.
There are also therapists that specialize in Cognitive Behavioral Therapy, EMDR and Heart Integration.
There are also alternative therapies like Reiki.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
Re: HElp me please.
Kathy, water therapy may progress to water walking eventually but as I understand it, first it starts out just floating in the water -- not in a cold pool but in a warm therapy pool. I don't know all of the details. I just remember there was a gal awhile back whom I think was named Vanessa who wrote a book about how water therapy worked for her.
Violet
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: HElp me please.
Thx NYT,
for this info.I have a therapist I see and will bring this info to her tomorrow. She does does a relaxation exercise while I'm hooked up to a biofeedback like device (attached to my ear) but it may be different from what u described. My PT, who knows me best, says my main goal is just what u said.. calming the sympathetic nervous system and getting the para-sympathetic to kick in.
I am so afraid at this point, that it must be feeding my symptoms of pain and the constant feeling of anal backup or urge to defecate. I wake up afraid of what the day will bring, and sure enough the symptoms occur, right after a meal.
I worry how I will accomplish all my "Mom" duties this Christmas, as well as be able to get out of my room and attend the social activities without worrying about embarrassing bathroom issues.(so hard and embarrassing to explain to people!)
My worry is my biggest impedimentto getting rid of symptoms, so I appreciate r suggestions!
Thx and I will be sure to mention it to my talk therapist! Best wishes to you!
Also Violet thx for ur response as well. Water walking is something my PT has always advised for me. I did so in summer in our backyard in-ground pool, but now it's hard to get to the local gym ..tho close-by --driving hurts so I
limit it. One of my docs ( my urologist - a nice guy who works with my physical therapist) says I prob'ly clench my muscles out of fear before I even get in the car, and he's right!
I believe my fear brings on the clenching, tight muscles and pain.. I am different than many patients, tho I know fear can be a factor for many with pelvic pain.
thx and Best wishes!
Kathy
for this info.I have a therapist I see and will bring this info to her tomorrow. She does does a relaxation exercise while I'm hooked up to a biofeedback like device (attached to my ear) but it may be different from what u described. My PT, who knows me best, says my main goal is just what u said.. calming the sympathetic nervous system and getting the para-sympathetic to kick in.
I am so afraid at this point, that it must be feeding my symptoms of pain and the constant feeling of anal backup or urge to defecate. I wake up afraid of what the day will bring, and sure enough the symptoms occur, right after a meal.
I worry how I will accomplish all my "Mom" duties this Christmas, as well as be able to get out of my room and attend the social activities without worrying about embarrassing bathroom issues.(so hard and embarrassing to explain to people!)
My worry is my biggest impedimentto getting rid of symptoms, so I appreciate r suggestions!
Thx and I will be sure to mention it to my talk therapist! Best wishes to you!
Also Violet thx for ur response as well. Water walking is something my PT has always advised for me. I did so in summer in our backyard in-ground pool, but now it's hard to get to the local gym ..tho close-by --driving hurts so I
limit it. One of my docs ( my urologist - a nice guy who works with my physical therapist) says I prob'ly clench my muscles out of fear before I even get in the car, and he's right!
I believe my fear brings on the clenching, tight muscles and pain.. I am different than many patients, tho I know fear can be a factor for many with pelvic pain.
thx and Best wishes!
Kathy