Hi there,
Anyone have any new updates as far as how they are doing post shockwave therapy?
Do people think this is something that is really worth a try? Is there any potential that it could do damage?
Is it covered by insurance?
Thanks,
Buttercup
New Person with Pudendal Nerve Disorder
-
Buttercup28
- Posts: 44
- Joined: Tue Feb 21, 2017 9:33 pm
Re: New Person with Pudendal Nerve Disorder
Sudden pelvic pain onset that landed me in the ER 2x -- diagnosed with severe pelvic floor dysfunction and suspected IC. Diagnosed with pudendal neuralgia via MRI and EMG and hip impingement/labral tear on CTscan. Ran the gamut with tests, treatments, procedures, injections, drugs, etc. since then. Still on the quest for answers....
Re: New Person with Pudendal Nerve Disorder
I'd also love to hear more from anyone who has undergone shockwave therapy. I can't really seem to find much info on it.Butterceup28 wrote:Hi there,
Anyone have any new updates as far as how they are doing post shockwave therapy?
Do people think this is something that Is there any potential that it could do damage?
Last edited by Morgano on Tue Oct 19, 2021 2:02 pm, edited 5 times in total.
Re: New Person with Pudendal Nerve Disorder
Clonazapam helps tremendously with anxiety and pain!
Re: New Person with Pudendal Nerve Disorder
Hi Molly,
I have been offline for ages, but saw your post.
I take a tiny amt of Clonazepam for sleep .25mg.. My actual dose is .5mg but I weaned it down so I wouldn't become dependent on it.
I use Baclofen/Valium compounded suppositories for pain, but can only use them while lying down as they won't stay in if I get up and cause urge to poop.
I need some pain med to help me while Im active..
I think one member here had mentioned that Clonazepam (Clonepin) had helped him with pain, before he got better. I wrote to him, awhile back, but got no reply.
What dose of Clonepin (Clonazepam) helps with pain ...Where is your pain if you don' mind saying? In my case I also need to calm down a very hyper central nervous system due to pain...
Thank you in advance!
Kathy
I have been offline for ages, but saw your post.
I take a tiny amt of Clonazepam for sleep .25mg.. My actual dose is .5mg but I weaned it down so I wouldn't become dependent on it.
I use Baclofen/Valium compounded suppositories for pain, but can only use them while lying down as they won't stay in if I get up and cause urge to poop.
I need some pain med to help me while Im active..
I think one member here had mentioned that Clonazepam (Clonepin) had helped him with pain, before he got better. I wrote to him, awhile back, but got no reply.
What dose of Clonepin (Clonazepam) helps with pain ...Where is your pain if you don' mind saying? In my case I also need to calm down a very hyper central nervous system due to pain...
Thank you in advance!
Kathy
Re: New Person with Pudendal Nerve Disorder
On Dec 16, 2018, at 2:42 PM, Kathy Doherty <kmcgeed@optonline.net> wrote:
Dear Kone,
I hope you are doing well. I‘m not sure if you remember me, but your reply to an email I wrote, popped up in my log today as I was doing a search for my son’s Christmas list.. I don't. know your email so 'Im writing you ..hoping you see it!
I took the above a sign to write you again about my PN -like condition. We talked via email in March 2017. I was also a patient of Dr Kirk Andrew ( if you remember me, I saw him and his partner in 2012 and did well..I sat for the time (5 days) I spent there.. It wore off on the day we left for home, and I knew I would need a few visits. I haven’t had a chance to get back up there, but am thinking of it now. . (I have had an intrathecal implanted pain pump since 2013 which sends meds on a continuous basis to my spinal cord. It hasn’t helped much.. as I couldn’t sit after getting the pump, (wrong choice most likely).
I am praying this Christmas for divine intervention to direct me to the way out of this pain.. I feel at this point, it’s driven by fear, due to the failures of the past.. I think the medical world is now slowly learning about chronic pelvic pain and the brain. I feel the ignorance of the past is partly what kept my symptoms going , I have a disorder most doctors weren’t trained in. The other part was my incessant research..This only fueled my fear and tightened my muscles…spiking my pain.
These days I am still suffering from severe throbbing anal/rectal pain. and find that these muscles default to a clenched state as soon as I awaken in the AM..
I saw a new group of doctors in NYC in late 2017 who seemed to understand pelvic pain. They sent me to a male Physical Therapist ( about 2 hours away ) who said my pain came from an inverted spine?.. and gave me a group of exercises that he insisted must be done. I have a hypertonic pelvic floor, stuck in a painful spasm.. and the exercises seemed counter -intutiive, ..things that I felt would only make my pelvic floor tighter,
With that in mind I stopped seeing him.
I then continued with my local PT with whom I'd made some very limited progress (mainly by her reassurance that she felt I could get well if we could get the spastic muscle area (pubo-rectalis muscles) to release, and by trigger point work.
I have been living a more active life since starting with her . In 2015 I began dining out again, and going to events etc. even attending the World Series when the NY Mets were in it.. I still dealt with pain afterwards, sometimes severe , sometimes not bad. For the ball game I had my full arsenal of meds and cushions with me, but frankly I think the pure excitement of that event was a distraction that took my mind off my body. (That type of relief is very rare for me) but shows the emotional component involved..) It has happened at a few other events that were very important to me. God seemed to intervene...
In 2018, my current PT seemed less concerned/about patient recovery and had her own personal problems.
I researched and found a new innovative group about a hour from home .. Most of the PTs (all female) had once suffered from pelvic pain. All have gotten well! They can relate to how I feel..(very important).
I work with a PT who fully believes I can get rid of my pain ..(though I am a huge skeptic!).. She gives me mild exercises to re-build my gluteal muscles which are flat and don’t support my body, after years of resting them, lying down so much . Some days I can do the exercises , but others they seem to increase my pain.. I have been with this group since September, and they are very encouraging. (they agree that someone who has been in pain for as long as me (sitting pain for about 8 years varying over time) and urinary issues varying for over a decade,…I will need to see them for quite some time.
I haven’t driven on a regular basis in several years. I have tried it twice within the past month.. I got through it with pain especially afterwards, but the feeling of independence was incredible and it was good to have my car in case I needed a break from shopping (my retail therapy!) I lie down in my van if I need to rest. I will continue this, as all my medical folks encourage me to do so and say that despite the pain, I am not hurting myself and am retraining the muscles and brain that sitting is normal..
I’ve also attended to a lot of dental work I'd ignored over the past decade due to the butt pain.. I went for several appointments recently ..root canal, tooth implant..etc, I hadadditional pain after some appointments,, but did well after others (norhyme or reason why).
My husband loyally takes me to countlessappointments, but is a quiet stoic type, and feels that worry and anxiety are the root of my pain. He doesn’t have an anxious bone in his body, and cannot relate to the idea of worry. He has no clue of the level of pain I deal with daily.. He expects a lot from me.
I have 3 great kids, 2 boys, ages 26 and 24 and a 18 year old daughter, a college freshman at Ohio State.. She is the most supportive in her quiet way, doing things to help me without being asked,.. I am so thankful for that, but miss her dearly when is she at school.
I thinking of revisiting Dr Kirk Andrew in the new year.. I am hoping not to have to, as I feel it will take multiple appointments and am scared that maybe my body changed since I saw him in 2012..
I may've mentioned to you that I have an intrathecal pain pump in my belly (installed incorrectly by the surgeon right over my navel) and putting pressure on my bladder. The pump attaches to a coil which attaches to my spinal cord sending the meds to my brain (it doesn’t help much and was not for me, in my opinion.)
I told Dr Andrew about it, so I'm hoping he can work around it.. He didn’t comment so I assume it’s okay, I’ll remind him again before we decide to see him again.. I am scheduled for a PN block next blocks but blocks have never helped me much. I can’t remember if I had one since my anal pain began, Im guessing I did. I am wary about doing one right before Christmas,, (side effects?)
I am also a believer like you, and despite all the failure and pain, I feel that God wants me to be well and have less pain. I am needed by my family and I want them see the healthy mom I was before pain started. My first symptoms (which were a constant need to urinate) became a problem a year after my dad died, We were very close and he was my emotional rock.. I think it’s no coincidence that my symptoms began then, though I know this is very physically driven as well.
I have felt the sensation of needing to get the last drop out when I urinate since I was 17. ( it suddenly started).I gently have been pushing out that last drops ever since (many years!), and I can feel it tightening my anal muscles! but my body never feels empty unless I do so. My PT is planning to work on that.. Im digressing, and I'm sorry, but I wanted to ask you how to find divine intervention?. I pray constantly, my family and friends pray, including a prayer group I belong to. I feel I need to do more, as I am still in great pain at times..
Did you ask your local clergy to pray.? Im unsure how to find divine help for my pain. We belong to our Catholic church but haven’t been there except for special occasions, in awhile, due to pain. I attended a funeral last year for my dear uncle and then the luncheon after.. Once again I had a break from pain and was able to sit/kneel on my cushions for a few hours while talking with relatives I hadn’t seen in ages. I didn’t suffer much pain,…Again divine intervention...as that day was important to me..
Thanks for reading my long story again.. If there are suggestions you can offer regarding meds that got you through before your recovery, ( for example I think you mentioned Clonazepam, which I take for sleep at night) or for how you were helped through prayer I would so appreciate it!
Merry Christmas and good health in the new year! Thanks again!
Kathy Doherty
Dear Kone,
I hope you are doing well. I‘m not sure if you remember me, but your reply to an email I wrote, popped up in my log today as I was doing a search for my son’s Christmas list.. I don't. know your email so 'Im writing you ..hoping you see it!
I took the above a sign to write you again about my PN -like condition. We talked via email in March 2017. I was also a patient of Dr Kirk Andrew ( if you remember me, I saw him and his partner in 2012 and did well..I sat for the time (5 days) I spent there.. It wore off on the day we left for home, and I knew I would need a few visits. I haven’t had a chance to get back up there, but am thinking of it now. . (I have had an intrathecal implanted pain pump since 2013 which sends meds on a continuous basis to my spinal cord. It hasn’t helped much.. as I couldn’t sit after getting the pump, (wrong choice most likely).
I am praying this Christmas for divine intervention to direct me to the way out of this pain.. I feel at this point, it’s driven by fear, due to the failures of the past.. I think the medical world is now slowly learning about chronic pelvic pain and the brain. I feel the ignorance of the past is partly what kept my symptoms going , I have a disorder most doctors weren’t trained in. The other part was my incessant research..This only fueled my fear and tightened my muscles…spiking my pain.
These days I am still suffering from severe throbbing anal/rectal pain. and find that these muscles default to a clenched state as soon as I awaken in the AM..
I saw a new group of doctors in NYC in late 2017 who seemed to understand pelvic pain. They sent me to a male Physical Therapist ( about 2 hours away ) who said my pain came from an inverted spine?.. and gave me a group of exercises that he insisted must be done. I have a hypertonic pelvic floor, stuck in a painful spasm.. and the exercises seemed counter -intutiive, ..things that I felt would only make my pelvic floor tighter,
With that in mind I stopped seeing him.
I then continued with my local PT with whom I'd made some very limited progress (mainly by her reassurance that she felt I could get well if we could get the spastic muscle area (pubo-rectalis muscles) to release, and by trigger point work.
I have been living a more active life since starting with her . In 2015 I began dining out again, and going to events etc. even attending the World Series when the NY Mets were in it.. I still dealt with pain afterwards, sometimes severe , sometimes not bad. For the ball game I had my full arsenal of meds and cushions with me, but frankly I think the pure excitement of that event was a distraction that took my mind off my body. (That type of relief is very rare for me) but shows the emotional component involved..) It has happened at a few other events that were very important to me. God seemed to intervene...
In 2018, my current PT seemed less concerned/about patient recovery and had her own personal problems.
I researched and found a new innovative group about a hour from home .. Most of the PTs (all female) had once suffered from pelvic pain. All have gotten well! They can relate to how I feel..(very important).
I work with a PT who fully believes I can get rid of my pain ..(though I am a huge skeptic!).. She gives me mild exercises to re-build my gluteal muscles which are flat and don’t support my body, after years of resting them, lying down so much . Some days I can do the exercises , but others they seem to increase my pain.. I have been with this group since September, and they are very encouraging. (they agree that someone who has been in pain for as long as me (sitting pain for about 8 years varying over time) and urinary issues varying for over a decade,…I will need to see them for quite some time.
I haven’t driven on a regular basis in several years. I have tried it twice within the past month.. I got through it with pain especially afterwards, but the feeling of independence was incredible and it was good to have my car in case I needed a break from shopping (my retail therapy!) I lie down in my van if I need to rest. I will continue this, as all my medical folks encourage me to do so and say that despite the pain, I am not hurting myself and am retraining the muscles and brain that sitting is normal..
I’ve also attended to a lot of dental work I'd ignored over the past decade due to the butt pain.. I went for several appointments recently ..root canal, tooth implant..etc, I hadadditional pain after some appointments,, but did well after others (norhyme or reason why).
My husband loyally takes me to countlessappointments, but is a quiet stoic type, and feels that worry and anxiety are the root of my pain. He doesn’t have an anxious bone in his body, and cannot relate to the idea of worry. He has no clue of the level of pain I deal with daily.. He expects a lot from me.
I have 3 great kids, 2 boys, ages 26 and 24 and a 18 year old daughter, a college freshman at Ohio State.. She is the most supportive in her quiet way, doing things to help me without being asked,.. I am so thankful for that, but miss her dearly when is she at school.
I thinking of revisiting Dr Kirk Andrew in the new year.. I am hoping not to have to, as I feel it will take multiple appointments and am scared that maybe my body changed since I saw him in 2012..
I may've mentioned to you that I have an intrathecal pain pump in my belly (installed incorrectly by the surgeon right over my navel) and putting pressure on my bladder. The pump attaches to a coil which attaches to my spinal cord sending the meds to my brain (it doesn’t help much and was not for me, in my opinion.)
I told Dr Andrew about it, so I'm hoping he can work around it.. He didn’t comment so I assume it’s okay, I’ll remind him again before we decide to see him again.. I am scheduled for a PN block next blocks but blocks have never helped me much. I can’t remember if I had one since my anal pain began, Im guessing I did. I am wary about doing one right before Christmas,, (side effects?)
I am also a believer like you, and despite all the failure and pain, I feel that God wants me to be well and have less pain. I am needed by my family and I want them see the healthy mom I was before pain started. My first symptoms (which were a constant need to urinate) became a problem a year after my dad died, We were very close and he was my emotional rock.. I think it’s no coincidence that my symptoms began then, though I know this is very physically driven as well.
I have felt the sensation of needing to get the last drop out when I urinate since I was 17. ( it suddenly started).I gently have been pushing out that last drops ever since (many years!), and I can feel it tightening my anal muscles! but my body never feels empty unless I do so. My PT is planning to work on that.. Im digressing, and I'm sorry, but I wanted to ask you how to find divine intervention?. I pray constantly, my family and friends pray, including a prayer group I belong to. I feel I need to do more, as I am still in great pain at times..
Did you ask your local clergy to pray.? Im unsure how to find divine help for my pain. We belong to our Catholic church but haven’t been there except for special occasions, in awhile, due to pain. I attended a funeral last year for my dear uncle and then the luncheon after.. Once again I had a break from pain and was able to sit/kneel on my cushions for a few hours while talking with relatives I hadn’t seen in ages. I didn’t suffer much pain,…Again divine intervention...as that day was important to me..
Thanks for reading my long story again.. If there are suggestions you can offer regarding meds that got you through before your recovery, ( for example I think you mentioned Clonazepam, which I take for sleep at night) or for how you were helped through prayer I would so appreciate it!
Merry Christmas and good health in the new year! Thanks again!
Kathy Doherty
Re: New Person with Pudendal Nerve Disorder
Update on my PN condition:
I was diagnosed in 2011 with bilateral PN impingement after a particularly painful ride on an exercise bike. (Read my story in the success section )Even though I was lucky to have an experienced PN doctor, (Dr. Stanley Antolak) he did nothing to help me. None of his injections or therapy helped. On this site, a fellow sufferer recommended I try therapy with Dr. Kirk Andrews in Ottawa, Canada. I started going up there for shockwave therapy in 2014. I saw him 6 times from 2014 to 2017. Each time I got a little bit better. My last visit was in October of 2017, and I have not had to go back since then. I still have PN, but it is not a serious issue anymore. I went from constant pain and an inability to sit, to no pain, and the ability to sit all day as needed (with a cushion). I am contemplating going back another time or two in order to see if I can get completely cured. I did not want o do surgery, as it seemed too risky, and medications were not helping much, so I tried shockwave, thinking I had little to lose (except money). I'm glad I found Dr. Andrews. He gave me my life back. I can now lead a normal life, doing just about anything I want to. While I realize shockwave is not a cure-all, I just want to let those with PN know that it is an option. I did not know if it would work until I tried it. I would not entertain surgery until I tried shockwave, and now I do not need surgery. I have a stretching regimen I do weekly to maintain my gains. Stretching has been very important in my recovery. If anyone has any questions about shockwave, (not available in USA), I am happy to give you more information. My e-mail address is konedog4@yahoo.com. Best wishes to you all.
I was diagnosed in 2011 with bilateral PN impingement after a particularly painful ride on an exercise bike. (Read my story in the success section )Even though I was lucky to have an experienced PN doctor, (Dr. Stanley Antolak) he did nothing to help me. None of his injections or therapy helped. On this site, a fellow sufferer recommended I try therapy with Dr. Kirk Andrews in Ottawa, Canada. I started going up there for shockwave therapy in 2014. I saw him 6 times from 2014 to 2017. Each time I got a little bit better. My last visit was in October of 2017, and I have not had to go back since then. I still have PN, but it is not a serious issue anymore. I went from constant pain and an inability to sit, to no pain, and the ability to sit all day as needed (with a cushion). I am contemplating going back another time or two in order to see if I can get completely cured. I did not want o do surgery, as it seemed too risky, and medications were not helping much, so I tried shockwave, thinking I had little to lose (except money). I'm glad I found Dr. Andrews. He gave me my life back. I can now lead a normal life, doing just about anything I want to. While I realize shockwave is not a cure-all, I just want to let those with PN know that it is an option. I did not know if it would work until I tried it. I would not entertain surgery until I tried shockwave, and now I do not need surgery. I have a stretching regimen I do weekly to maintain my gains. Stretching has been very important in my recovery. If anyone has any questions about shockwave, (not available in USA), I am happy to give you more information. My e-mail address is konedog4@yahoo.com. Best wishes to you all.
Re: New Person with Pudendal Nerve Disorder
My husband had surgery with Dr Antolok in Mn and his life has been hell ever since. Right after surgery the Dr said, "It's going to be hell for you to go to the bathroom" . And that was that. We are seeking help my husband wants to die. It's been hell for the entire family. We have tried everything.
Re: New Person with Pudendal Nerve Disorder
Hi Cara,
I'm so sorry that your husband and family have suffered so much. Please don't let him lose hope. What other treatments has he tried? Many people have had luck with stimulators. I think the drg stimulators have been especially effective. Has you looked into that? Someone else has posted about a pain pump that seems to be effective, so that may be an option.
April
I'm so sorry that your husband and family have suffered so much. Please don't let him lose hope. What other treatments has he tried? Many people have had luck with stimulators. I think the drg stimulators have been especially effective. Has you looked into that? Someone else has posted about a pain pump that seems to be effective, so that may be an option.
April