Hi Violet
Thx for your ideas!
yes I had a combo in my pump which had marcine (like lidocaine and clonidine and Morphine) It barely touched the pain, so they eventually removed it all ..long story and
Then I tried Dilaudid since that med used to help quite a bit in the suppository form.
Weirdly its even worse than the other combos...With the above I could get around, shop for awhile, cook a few meals and even attend a party ...alll done with a decent level of pain,but doable.
Now just the Dilaudid and some Marcaine they are adding back in,,Im in so much pain, Im out of my mind.
Its ACUTE pain and Im begining to think there's something else going on.. My IC urge/heisitancy is also aggravated ...guess you must be sick of hearing about this!
Im trying oral Dilaudid too -either 4mg or mg as it helped awhile back and allowed me to sit thorugh events in 2012..
Could rectal cancer or any other acute form of disease be the reason for this incredible spike in pain since my pump changes??
Makes no sense tho?
I want to check myself into a hospital but have been told that pain is not a good enough reason.
I dont want to be negative, but I can barely breath it hurts so much at the anal opening and just outside. Im scared to death and I can feel the pain go up when frightened or when I have an upsetting conversation... so I wonder if my fear/emotions could cause pain this exquisite pai?n ...I can't convince my husband of how bad it s...He has heard talk of anal pain since 2011 (the surgery) and bladder issues since 2006, so he thinks its the same old ting and expects me to push through it etc.
But this is acute...> is there any thing I can do?...I weigh 95 lb cause I cant stand up long enough to get food into my body.. (I have been a bit underweight all my life ...gaining weight is hard for me! But now I have no internal cushioning.... all the IC diets and elimination diets took away my butt hips etc... That ruined my health
So Ive been trying to re-gain the lost weight even since 2009 or so.. it varies but can't get it above 100..Im scared!
Maybe this isn't PN at all?
BTW the way yes I did try a Prialt trial with a single injection method but no change.
Im about to try a new pain doc, (got a another opinion so will see ...he has ideas but for now is there any way to cope with this acute pain.
I could drug myself with enough clonepin to put me to sleep but Have never done that before... and don't wnat to
I just can't cope..
Has anyone felt this bad ever and if so what did you do? (in the moment) What is wrong? Before 2006 I was a very healthy happy lady and never took a medicine in my life.
Thx so much friends...appreciate you all so much.
Kathy
pain pump
Re: pain pump
Kathy'd,
Did your insurance make you trial a stim before the pain pump?
Also, what kind if pain levels are you living in?
A neurologist here is beginning a research study dripping CBD into the intrathecal space.
(A component of MJ that's not psychoactive). Will be interesting to hear results.
C
Did your insurance make you trial a stim before the pain pump?
Also, what kind if pain levels are you living in?
A neurologist here is beginning a research study dripping CBD into the intrathecal space.
(A component of MJ that's not psychoactive). Will be interesting to hear results.
C
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Re: pain pump
Dear Kathy,
Yes! I have been in the spot you are in right now, and being so fearful with the pain and all is not a good thing!
If you are on a new medication (within the last month) this or these meds could be contributing to the fear....you may want to call your Dr. And ask about this...Esp fears about being alone in the house etc....
If you are loosing more weight you Must drink lots of water and try to get in an instant breakfast or one of those
Food meal drinks. I say this to ward off any issues like kidney stones - (I got one when I was so bad) from dehydration,
And family history.
It sounds like you are keeping good records of what is happening and that is good to do, but at the end of those pages
Try to right some things you are greatful for. Documenting all of this can dampen ones spirit, and this will help bring you back to the moment.
Also, I was tested positive for the MTHFR gene which is common in women, and can cause you to be sensitive to medications and a lot of other things.
Lastly, when my rectal pain is that bad, and I am out of options - I pack myself with ice, put my hips on two pillows and wait for the pudendal nerve to fall back into the pelvic cavity. A therapist told me this once and it helps!
I am praying for you Kathy!
~Josie
Yes! I have been in the spot you are in right now, and being so fearful with the pain and all is not a good thing!
If you are on a new medication (within the last month) this or these meds could be contributing to the fear....you may want to call your Dr. And ask about this...Esp fears about being alone in the house etc....
If you are loosing more weight you Must drink lots of water and try to get in an instant breakfast or one of those
Food meal drinks. I say this to ward off any issues like kidney stones - (I got one when I was so bad) from dehydration,
And family history.
It sounds like you are keeping good records of what is happening and that is good to do, but at the end of those pages
Try to right some things you are greatful for. Documenting all of this can dampen ones spirit, and this will help bring you back to the moment.
Also, I was tested positive for the MTHFR gene which is common in women, and can cause you to be sensitive to medications and a lot of other things.
Lastly, when my rectal pain is that bad, and I am out of options - I pack myself with ice, put my hips on two pillows and wait for the pudendal nerve to fall back into the pelvic cavity. A therapist told me this once and it helps!
I am praying for you Kathy!
~Josie
knitting keeps me sane!
Re: pain pump
Kathy,
Are you feeling any better this week, emotionally or physically?
Are you on our FB are " pudendal neuralgia hope"? Its a closed group, so private, and you can " chat" with each other in real time. It helps greatly when you feel in " crisis mode". We are all supportive of one another. Just a thought.
Xx cm
Are you feeling any better this week, emotionally or physically?
Are you on our FB are " pudendal neuralgia hope"? Its a closed group, so private, and you can " chat" with each other in real time. It helps greatly when you feel in " crisis mode". We are all supportive of one another. Just a thought.
Xx cm
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Re: pain pump
Hi everyone to who responded to my posts and thank you soo much!
I was offline for awhile and just now noticed your responses. I want to try to answers each post. Thanks so much for responding and caring. It means a lot to me.
You guys are all so smart and understanding.
At the moment Im trying to get my pain pump nurse to understand how medicines can affect one's ability to pee well, when you have pelvic floor dysfunction or trigger points, tense muscles, clenching muscles, whatever, as the origin of your pain issue,...like me.
I never had any of the classic IC symptoms. or PN symptoms . I wasn't a bike rideror weigh-lifter, nor did I have a dramatic surgery. My 3 child births were pretty textbook and each labor was only about 5 hours.
I did however have a traumatic year in 2005- 2006 with the loss of my dad and father in law. I was pretty devastated at the sudden loss of my dad of course, but kept on going and got through it fine, I thought!
I had never been sick in my life. I didn't have multiple bladder infections in my life like many patients,
but I have needed to "push" to get that last drop of urine out. (That NOT a good idea!)
Ive been doing that since age 18, but it worked fine and gave me relief, and I was fine. Then at age 48 after that traumatic year, more urge/ frequency occurred and then one day (after a cystoscopy) in the urologist's office. my urge/frequency sensation became constant!
It's a long story but I think I have severe pelvic floor dysfunction. Im trying to get the point across to my new pain doctor and my trusted pain pump nurse, that having to strain to pee is NOT normal; its' quite painful and that some types of MEDS can cause this. Its happened with most combos of meds they put in my pain pump, so my nurse won't agree that one drug is worse than another. Meds in general do this to some of us. Also the surgeon put the pump right over my bladder, as he didn't have much room in my slim body,so thats seems to be aggravating as well.
Its hard to know what exaclty causes urinary issues but they are whats holding us back.
Lately I feel the Dilaudid in my pump has increased my urinary issues, but can't be sure, based on my history of this issue.
My main goal is to get the rectal pain down so I can drive and function more normally and be the type of wife and mother my family needs.
Thank you Josie for posting that test you mentioned regarding medicine sensitivities and how some people have this.
I probably will look into it .
How can I get my medical personnel to see that pelvic floor dysfunction--that constant need to pee sensation-- (whether its IC/ PN or whatever--- is PAINFUL in and of itself and , and that its happens to a world of people out there? Docs/nurses get frustrated when meds do this, and I think they tend to think of the patient as being neurotic. But they're not living it!
I won't bore you with any more details but thanks again. Im sorry if Ive repeated myself here!
I just started with a new pain doctor who seems very smart and I want him to take my pelvic floor issues seriously and understand that pelvic floor dysfunction could be the root cause of all my issues, tho I had a nerve surgery in 2011 with Dellon which seemed to be causal in the rectal pain.
However the tightness on the right side of my pelvic floor is something Ive felt since June of 2006
Thx everyone for listening and for any responses! I really appreciate it.
I was offline for awhile and just now noticed your responses. I want to try to answers each post. Thanks so much for responding and caring. It means a lot to me.
You guys are all so smart and understanding.
At the moment Im trying to get my pain pump nurse to understand how medicines can affect one's ability to pee well, when you have pelvic floor dysfunction or trigger points, tense muscles, clenching muscles, whatever, as the origin of your pain issue,...like me.
I never had any of the classic IC symptoms. or PN symptoms . I wasn't a bike rideror weigh-lifter, nor did I have a dramatic surgery. My 3 child births were pretty textbook and each labor was only about 5 hours.
I did however have a traumatic year in 2005- 2006 with the loss of my dad and father in law. I was pretty devastated at the sudden loss of my dad of course, but kept on going and got through it fine, I thought!
I had never been sick in my life. I didn't have multiple bladder infections in my life like many patients,
but I have needed to "push" to get that last drop of urine out. (That NOT a good idea!)
Ive been doing that since age 18, but it worked fine and gave me relief, and I was fine. Then at age 48 after that traumatic year, more urge/ frequency occurred and then one day (after a cystoscopy) in the urologist's office. my urge/frequency sensation became constant!
It's a long story but I think I have severe pelvic floor dysfunction. Im trying to get the point across to my new pain doctor and my trusted pain pump nurse, that having to strain to pee is NOT normal; its' quite painful and that some types of MEDS can cause this. Its happened with most combos of meds they put in my pain pump, so my nurse won't agree that one drug is worse than another. Meds in general do this to some of us. Also the surgeon put the pump right over my bladder, as he didn't have much room in my slim body,so thats seems to be aggravating as well.
Its hard to know what exaclty causes urinary issues but they are whats holding us back.
Lately I feel the Dilaudid in my pump has increased my urinary issues, but can't be sure, based on my history of this issue.
My main goal is to get the rectal pain down so I can drive and function more normally and be the type of wife and mother my family needs.
Thank you Josie for posting that test you mentioned regarding medicine sensitivities and how some people have this.
I probably will look into it .
How can I get my medical personnel to see that pelvic floor dysfunction--that constant need to pee sensation-- (whether its IC/ PN or whatever--- is PAINFUL in and of itself and , and that its happens to a world of people out there? Docs/nurses get frustrated when meds do this, and I think they tend to think of the patient as being neurotic. But they're not living it!
I won't bore you with any more details but thanks again. Im sorry if Ive repeated myself here!
I just started with a new pain doctor who seems very smart and I want him to take my pelvic floor issues seriously and understand that pelvic floor dysfunction could be the root cause of all my issues, tho I had a nerve surgery in 2011 with Dellon which seemed to be causal in the rectal pain.
However the tightness on the right side of my pelvic floor is something Ive felt since June of 2006
Thx everyone for listening and for any responses! I really appreciate it.
Re: pain pump
Kathy, it seems like you have had bad luck with just about everything you tried. I guess you've been around long enough on the forum to see what the options are for pain relief. I hope this new pain doc can help you. We just posted a flyer on the homepage at pudendalhope.org that lists the symptoms of PN including the bladder symptoms you are describing. I don't know if it would help you with explaining things to your providers but maybe it would. I know how dreadful the bladder symptoms can be.
Take care,
Violet
Take care,
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: pain pump
Hi Violet.
I hate to think of it as "bad luck" but rather bad timing, in that the doctors I saw just haven't been trained enough in IC, PN or pelvic pain issues. A caring doc I saw really wanted to help. She knew about some factors, but needed input from other medical fields. So she sent me to a plethora of unfortunately clueless specialists,and this was in the NYC area -- a place one would assume would be a mecca for innovative health care.
One doc doesn't have the expertise to treat this alone. It's got to be a multi-modal team effort with docs who are willing to speak with each other. Thats hard to find and takes time. Thats why myself and many others haven't found relief..yet.
For example, the fields involved could be urology, gynecology, orthopedics, chiropractics, osteopath... and psychotherapist -for stress - which causes the clenching and PFD etc and of course Pain mgmt.. the latter being the most important. Im sure I have left out some other specialties.
IC complicates things because some some IC patients can't tolerate the pain meds that help PN...(or we THINK we can't cause we've read so many dang horror stories about meds causing one symptom or another...and that caused us to become more scared, clench the pelvic floor and add to the anxiety,tension pain cycle.
It's important to remember we are all different and just because one patient has some side effect it doesn't mean we will
Thanks Violet for posting the flyer.. and for your good wishes.
I can print this out and give to providers.. so they get the connection between IC and PN.
Best wishes!
I hate to think of it as "bad luck" but rather bad timing, in that the doctors I saw just haven't been trained enough in IC, PN or pelvic pain issues. A caring doc I saw really wanted to help. She knew about some factors, but needed input from other medical fields. So she sent me to a plethora of unfortunately clueless specialists,and this was in the NYC area -- a place one would assume would be a mecca for innovative health care.
One doc doesn't have the expertise to treat this alone. It's got to be a multi-modal team effort with docs who are willing to speak with each other. Thats hard to find and takes time. Thats why myself and many others haven't found relief..yet.
For example, the fields involved could be urology, gynecology, orthopedics, chiropractics, osteopath... and psychotherapist -for stress - which causes the clenching and PFD etc and of course Pain mgmt.. the latter being the most important. Im sure I have left out some other specialties.
IC complicates things because some some IC patients can't tolerate the pain meds that help PN...(or we THINK we can't cause we've read so many dang horror stories about meds causing one symptom or another...and that caused us to become more scared, clench the pelvic floor and add to the anxiety,tension pain cycle.
It's important to remember we are all different and just because one patient has some side effect it doesn't mean we will
Thanks Violet for posting the flyer.. and for your good wishes.
I can print this out and give to providers.. so they get the connection between IC and PN.
Best wishes!
Re: pain pump
HI Carolm
Sorry I m replying so latel Im trying to keep up with my replies and noticed I missed yours .
Thx for the info.
Things have been challengeing trying to manage a househol,, a marriage (hard tho my hubby is a decent loyal man and a great dad) he is exhausted and mentally checked out after years of this , and trying to find answers ... so hard to get the pain people to understand the impact my past experience with IC and some meds has with my fear of trying new meds ----with IC you never know--.am I REALLY having the side effect from the new med or it it cause Im conditioned by now to expect it?
Nurses and docs can impatient with that and thinK you're neurotic.
I wouldn't wish this on anyone, but if only they could experience this even for a day, they would be more understanding!
BTW what is CBD (the med you mentioned regarding the study?) or MJ.... maybe Im forgetting something?
Thx for your idea about Facebook
I am enrolled in a couple of facebook groups that are about PN...what is your grp called?
I'm not the most facebook savvy person..
My PT and I both checked out a PN facebook group one day last year and someone from a PN group was spouting all these horrible dark thoughts .You wouldn't believe ve what this person was saying. My PT was horrified, as was I. She advised me to stay off. It s a double edged sword..I would love to talk to folks but, Im only looking to hear hopeful, informative thoughts as Im sure all of us here are,
Thx for your reply! hope you had a nice memorial day wknd.
These gps are supposed to be a place of hope and support but I guess in Facebook people can say whatever they watn
Sorry I m replying so latel Im trying to keep up with my replies and noticed I missed yours .
Thx for the info.
Things have been challengeing trying to manage a househol,, a marriage (hard tho my hubby is a decent loyal man and a great dad) he is exhausted and mentally checked out after years of this , and trying to find answers ... so hard to get the pain people to understand the impact my past experience with IC and some meds has with my fear of trying new meds ----with IC you never know--.am I REALLY having the side effect from the new med or it it cause Im conditioned by now to expect it?
Nurses and docs can impatient with that and thinK you're neurotic.
I wouldn't wish this on anyone, but if only they could experience this even for a day, they would be more understanding!
BTW what is CBD (the med you mentioned regarding the study?) or MJ.... maybe Im forgetting something?
Thx for your idea about Facebook
I am enrolled in a couple of facebook groups that are about PN...what is your grp called?
I'm not the most facebook savvy person..
My PT and I both checked out a PN facebook group one day last year and someone from a PN group was spouting all these horrible dark thoughts .You wouldn't believe ve what this person was saying. My PT was horrified, as was I. She advised me to stay off. It s a double edged sword..I would love to talk to folks but, Im only looking to hear hopeful, informative thoughts as Im sure all of us here are,
Thx for your reply! hope you had a nice memorial day wknd.
These gps are supposed to be a place of hope and support but I guess in Facebook people can say whatever they watn