Two months post-op from shockwave therapy in Cornwall (this was my fifth trip to see Dr. Andrews):
The last treatments were very effective in targeting the trouble spots on my right pudendal nerve and perineum. After the three treatments, I felt much better. And two months later, continuing daily stretching, I feel even better. I can sit normally now without pain. I can lift weights again, work in the yard, run up a hill (slowly of course because I'm old!), jump, squat, and do just about everything again. Virtually all my symptoms have been eliminated (From the beginning of this condition in 2011, I had bothersome rectal and severe perineum symptoms). Now I have just the slightest symptoms, and I believe they will subside too with continued stretching and movement. I'd consider myself 95% better. I know I'm more susceptible to reinjury, so I am careful to not do strenuous squats, bike riding, dead lifts, or anything that puts a significant strain on the perineum. I'd love to again ride a bike, but having suffered literally through 5 years of this condition, I am giving up bike riding.
I write this to give hope to those who suffer with this condition, for a life without hope is a miserable existence. My doctor (Dr. Antolak), told me in 2011 that I'd have to learn to live with my condition. At that point I could not sit or stand without pain. I was devastated by his prognosis. But Dr. Antolak did not know anything about shockwave. Five years later, I'm so grateful for shockwave and Dr. Andrews.
Perhaps you will find improvement in shockwave as I did. Perhaps some other therapy will work better for you. The point is, don't give up!
I intend to write up my entire story and post it in the success section on this website when I get more time to do so. When I first visited this website, there were few success stories. That was discouraging for me. We need all the hope we can get.
I also thank the editors of this site because without it, I doubt I would have found the therapy that helped me recover. A fellow on this site tried shockwave and I contacted him, he called me, and he educated me on the benefits of shockwave. Before talking with him, I'd never heard of shockwave. So I thank the people/person that keeps this site running. My life was saved because of it.
kone
New Person with Pudendal Nerve Disorder
Re: New Person with Pudendal Nerve Disorder
Kone,
Many thanks for keeping us updated on your progress. I'm looking forward to reading your success story entry!
April
Many thanks for keeping us updated on your progress. I'm looking forward to reading your success story entry!
April
Re: New Person with Pudendal Nerve Disorder
Thanks for posting, Kone. Glad to hear you are doing even better!
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.
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make-it-stop
- Posts: 68
- Joined: Tue May 10, 2011 6:53 am
- Location: Chicago, IL
Re: New Person with Pudendal Nerve Disorder
Kone,
Thank you for posting about your success story. I, also, have noticed that when I stretch my hamstrings, my sitting pain is reduced for a short while (until they tighten back up again). You mentioned a couple of posts ago that one stretch in particular has really been helpful for you - being in a sitting position and leaning forwards. I was wondering what you meant exactly by "sitting position." Like are you sitting in a chair, or are you sitting on a mat with your legs straight out in front of you, or butterfly position?
Also, do you know if there is a list of shockwave providers anywhere on the internet? I want to try shockwave therapy, even if only for my glutes and back, but I'm not having luck with finding where the providers are.
Wishing you continued progress.
Thank you for posting about your success story. I, also, have noticed that when I stretch my hamstrings, my sitting pain is reduced for a short while (until they tighten back up again). You mentioned a couple of posts ago that one stretch in particular has really been helpful for you - being in a sitting position and leaning forwards. I was wondering what you meant exactly by "sitting position." Like are you sitting in a chair, or are you sitting on a mat with your legs straight out in front of you, or butterfly position?
Also, do you know if there is a list of shockwave providers anywhere on the internet? I want to try shockwave therapy, even if only for my glutes and back, but I'm not having luck with finding where the providers are.
Wishing you continued progress.
5/11: burning in all areas innervated by PN; self-diagnosed PN
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
Re: New Person with Pudendal Nerve Disorder
I have several stretches that I do to stay limber. I don't know what they are called, so perhaps best to describe them....
1. Seated butterfly stretch
Sit on floor (use a cushion with a cut-out if it hurts to sit), and place soles of the feet together, with knees splayed outward. Now flatten knees away from body laterally while you lean forward as far as you can. (keep your back straight as possible) Start with your feet about a foot forward from your pelvic region. As you warm up to this stretch, try to draw your heels as close to your pelvic region as possible. With time, it will be possible to completely flatten out your knees to the floor while touching your nose to your feet or floor in between your feet!
2. Seated hamstring/pelvic stretch
Sit on floor and extend legs outwards at a 45 degree angle. Lean forward with back straight as far as you are able and hold position for 30-60 seconds. Reach with your hands as far forward as you can (on the floor). An alternate stretch is to place legs straight forward and together, and then lean torso forward as far as you can. This stretches a different part of the buttocks, hamstrings, and calves.
3. Hamstring stretch.
While seated, extend one leg out from body laterally at 45 degree angle. Now lean forward with torso and reach for that foot with your hands. Grab your toes or sole of foot and hold position as long as possible. Alternate legs right and left as you warm to this stretch.
4. Standing hamstring stretch.
Stand with wide legs apart and knees straight (locked). Now touch floor with fingers. Try to touch palms on floor as goal. Hold position for 15-30 seconds. Now decrease the angle of the legs so your feet come a bit closer together. Do the same stretch and hold. Goal is to try to stand with feet shoulder width apart and touch palms to floor. (I'm not even close to this goal yet).
5. Squat stretch. (Note: you do not do an actual squat! Squats can be flare-producing exercises. Only do this stretch if it does not hurt or flare your condition) With feet flat on floor and about shoulder width apart, get in a full squat position with legs folded (completely) at knees, and hamstrings fully resting on calves. Your forearms are resting on the inner part of your legs near your knees. Now push your knees outward laterally with your forearms while your torso leans forward between your knees/legs. As you lean forward, you will feel the stretch in your perineum. Again, hold the stretch as long as a minute at a time.
These are my five main stretches. I start them very slowly! I never push the stretch until i am sufficiently warmed up. So start slowly and gently, and as your tissues stretch and warm up, then gradually stretch further and further. I alternate these stretches into sets, doing each stretch for 2-3 minutes. Then I repeat the circuit 3-5x depending on how much time I have. Sometimes when I am watching tv in my den, I am on the floor stretching for 1-2 hours.
When I began stretching, I could not hardly do anything. I was so tight in my pelvis and legs (mostly from inactivity due to pain) that the slightest stretch caused a lot of pain. Using a slow and steady approach, I kept at it every day, knowing I was not going to be flexible like a gymnast overnight1 It literally took me several years to get to where I am today. I also had 4 sessions of shockwave therapy as well over those years. The shockwave therapy enabled me to stretch with less pain and less chance of a flare. My therapist, Dr. Andrews, advised me to stretch like this in-between his shockwave sessions to maintain the results of each session. And for the most part, that strategy worked for me.
Early on in this routine, I did cause myself to flare several times, and I had to cease stretching for a time until the flare calmed down. If any of these stretches cause a flare consistently, then perhaps you are not ready for that stretch. If you are making yourself worse by stretching, then obviously do not pursue it.
In my case, I slowly got better over months of stretching. Between shockwave sessions, I stretched every day without fail. I was able to maintain my improvement through stretching, and even get more improvement on top of shockwave.
My theory is that the more flexible the pelvic tissues and muscles are, the more freedom the pudendal nerve and other nerves have to slide along tissue planes. On prominent theory behind PNE is that the nerve is entrapped between tissue planes and is no longer able to slide freely. When it is trapped, it causes the nerve to fire and tense the muscles of the pelvic floor, which gives you tension and that hard golf-ball sensation when you sit. Stretching lengthens the muscles and stretches the fascia between tissue layers. By lengthening the muscles and fascia, you break down the adhesions between tissues and break the tightly clenched muscle tension as well. Combined with shockwave (which further breaks down scar tissue and adhesions), stretching can be a real tool for diminishing the pain of PNE.
My shockwave therapist is Dr. Andrews in Cornwall, Ontario. He knows the anatomy of the pudendal nerve and how it affects the various tissues around it. He uses a protocol for applying shockwave to the affected tissues. Once the exact spot, or spots are identified, (areas causing the problem) those spots are then targeted in future shockwave sessions. Shockwave is not a miracle cure. You most likely will not get better overnight, or even after several sessions. However, I think you will notice improvements with each shockwave session, and stretching is a means to preserve those improvements over time. After each shockwave session (despite being quite sore), I noticed huge leaps in improvement in function and pain. However, over time (weeks to months) I also noticed that with sitting (we all have to sit sometime!), my pudendal nerve tended to want to regress back to the original condition. Stretching (for me) prevented that from happening.
Granted, stretching will not help everyone, nor is it a cure-all. However, stretching can be a real positive force in reducing the pain and lack of function in PN conditions.
kone
1. Seated butterfly stretch
Sit on floor (use a cushion with a cut-out if it hurts to sit), and place soles of the feet together, with knees splayed outward. Now flatten knees away from body laterally while you lean forward as far as you can. (keep your back straight as possible) Start with your feet about a foot forward from your pelvic region. As you warm up to this stretch, try to draw your heels as close to your pelvic region as possible. With time, it will be possible to completely flatten out your knees to the floor while touching your nose to your feet or floor in between your feet!
2. Seated hamstring/pelvic stretch
Sit on floor and extend legs outwards at a 45 degree angle. Lean forward with back straight as far as you are able and hold position for 30-60 seconds. Reach with your hands as far forward as you can (on the floor). An alternate stretch is to place legs straight forward and together, and then lean torso forward as far as you can. This stretches a different part of the buttocks, hamstrings, and calves.
3. Hamstring stretch.
While seated, extend one leg out from body laterally at 45 degree angle. Now lean forward with torso and reach for that foot with your hands. Grab your toes or sole of foot and hold position as long as possible. Alternate legs right and left as you warm to this stretch.
4. Standing hamstring stretch.
Stand with wide legs apart and knees straight (locked). Now touch floor with fingers. Try to touch palms on floor as goal. Hold position for 15-30 seconds. Now decrease the angle of the legs so your feet come a bit closer together. Do the same stretch and hold. Goal is to try to stand with feet shoulder width apart and touch palms to floor. (I'm not even close to this goal yet).
5. Squat stretch. (Note: you do not do an actual squat! Squats can be flare-producing exercises. Only do this stretch if it does not hurt or flare your condition) With feet flat on floor and about shoulder width apart, get in a full squat position with legs folded (completely) at knees, and hamstrings fully resting on calves. Your forearms are resting on the inner part of your legs near your knees. Now push your knees outward laterally with your forearms while your torso leans forward between your knees/legs. As you lean forward, you will feel the stretch in your perineum. Again, hold the stretch as long as a minute at a time.
These are my five main stretches. I start them very slowly! I never push the stretch until i am sufficiently warmed up. So start slowly and gently, and as your tissues stretch and warm up, then gradually stretch further and further. I alternate these stretches into sets, doing each stretch for 2-3 minutes. Then I repeat the circuit 3-5x depending on how much time I have. Sometimes when I am watching tv in my den, I am on the floor stretching for 1-2 hours.
When I began stretching, I could not hardly do anything. I was so tight in my pelvis and legs (mostly from inactivity due to pain) that the slightest stretch caused a lot of pain. Using a slow and steady approach, I kept at it every day, knowing I was not going to be flexible like a gymnast overnight1 It literally took me several years to get to where I am today. I also had 4 sessions of shockwave therapy as well over those years. The shockwave therapy enabled me to stretch with less pain and less chance of a flare. My therapist, Dr. Andrews, advised me to stretch like this in-between his shockwave sessions to maintain the results of each session. And for the most part, that strategy worked for me.
Early on in this routine, I did cause myself to flare several times, and I had to cease stretching for a time until the flare calmed down. If any of these stretches cause a flare consistently, then perhaps you are not ready for that stretch. If you are making yourself worse by stretching, then obviously do not pursue it.
In my case, I slowly got better over months of stretching. Between shockwave sessions, I stretched every day without fail. I was able to maintain my improvement through stretching, and even get more improvement on top of shockwave.
My theory is that the more flexible the pelvic tissues and muscles are, the more freedom the pudendal nerve and other nerves have to slide along tissue planes. On prominent theory behind PNE is that the nerve is entrapped between tissue planes and is no longer able to slide freely. When it is trapped, it causes the nerve to fire and tense the muscles of the pelvic floor, which gives you tension and that hard golf-ball sensation when you sit. Stretching lengthens the muscles and stretches the fascia between tissue layers. By lengthening the muscles and fascia, you break down the adhesions between tissues and break the tightly clenched muscle tension as well. Combined with shockwave (which further breaks down scar tissue and adhesions), stretching can be a real tool for diminishing the pain of PNE.
My shockwave therapist is Dr. Andrews in Cornwall, Ontario. He knows the anatomy of the pudendal nerve and how it affects the various tissues around it. He uses a protocol for applying shockwave to the affected tissues. Once the exact spot, or spots are identified, (areas causing the problem) those spots are then targeted in future shockwave sessions. Shockwave is not a miracle cure. You most likely will not get better overnight, or even after several sessions. However, I think you will notice improvements with each shockwave session, and stretching is a means to preserve those improvements over time. After each shockwave session (despite being quite sore), I noticed huge leaps in improvement in function and pain. However, over time (weeks to months) I also noticed that with sitting (we all have to sit sometime!), my pudendal nerve tended to want to regress back to the original condition. Stretching (for me) prevented that from happening.
Granted, stretching will not help everyone, nor is it a cure-all. However, stretching can be a real positive force in reducing the pain and lack of function in PN conditions.
kone
Re: New Person with Pudendal Nerve Disorder
By the way, there are no shockwave providers in the USA thanks to restrictions placed on shockwave therapy by the FDA. I have written to the FDA to lift these restrictions to no avail. So the only place you can go in North America for shockwave is Canada.
kone
kone
Re: New Person with Pudendal Nerve Disorder
Hi Kone,
Thx once again for all the info.
I cannot sit at all, but the help of a very savvy and knowlegable Pt I finally progressed to being able to kneel on cushions to eat dinner at a restaurant for ex. I also have a cushion that my husband and concocted with the use of a circular Roho cushion that attaches to a soft toilet etc..for driving
but that still causes bad pain during and after so I'm on the look-out for a cushion which rasise up my painful anal area...
I cannot do any stretches requiring sitting.
But I was given some gentle standing stretches by my PT to help calm my sympathetic nervous system, which in my case we are fairly certain is the reason my anal pain ( a severe spasm ) wont' budge..yet. Mine is not due to PN.
I just hurt my back mildly last night, so must wait until the stiffness there heals.
So as usual we are all at different stages in our journey to healing.
I'm the gal who saw D rAndrew in 2012 -I believe- I was able to sit without a cushion the 5 days I was there, only.
We knew I would need several sessions in order to see dramatic improvement. We haven't gone back for various reasons, but hearing your story inspires me and reminds me that this is an option to try again! I want my husband to read your story, but after years of my pain he a bit tuned out etc...Hopefully your story may inspire him if I decide to go up again. We have a 7 hours drive approx from Dr Andrew's location.
Thx again for all the info and best of luck..Its so good to hear!
Thx once again for all the info.
I cannot sit at all, but the help of a very savvy and knowlegable Pt I finally progressed to being able to kneel on cushions to eat dinner at a restaurant for ex. I also have a cushion that my husband and concocted with the use of a circular Roho cushion that attaches to a soft toilet etc..for driving
but that still causes bad pain during and after so I'm on the look-out for a cushion which rasise up my painful anal area...
I cannot do any stretches requiring sitting.
But I was given some gentle standing stretches by my PT to help calm my sympathetic nervous system, which in my case we are fairly certain is the reason my anal pain ( a severe spasm ) wont' budge..yet. Mine is not due to PN.
I just hurt my back mildly last night, so must wait until the stiffness there heals.
So as usual we are all at different stages in our journey to healing.
I'm the gal who saw D rAndrew in 2012 -I believe- I was able to sit without a cushion the 5 days I was there, only.
We knew I would need several sessions in order to see dramatic improvement. We haven't gone back for various reasons, but hearing your story inspires me and reminds me that this is an option to try again! I want my husband to read your story, but after years of my pain he a bit tuned out etc...Hopefully your story may inspire him if I decide to go up again. We have a 7 hours drive approx from Dr Andrew's location.
Thx again for all the info and best of luck..Its so good to hear!
Re: New Person with Pudendal Nerve Disorder
kathyd:
My battle to get functional has been waged over a 5 year period. At first I could not sit at all either. Shockwave was the only factor/therapy that enabled me to sit again. Before shockwave, I could not stretch either.
I was up in Ottawa/Cornwall in February, 2016, and had the best subsequent 5 months I have had in these past five years. I was able to sit, exercise, run, jump, and do normal things again. Now, I have relapsed a bit. I still don't have any pain, but I get a nerve sensation in the inferior rectal area that is creepy/strange. That tells me I'm still impinged in that area of the pudendal nerve. I hope to keep making gains in flexibility with stretching and in August or September go back to Cornwall for another shockwave session.
I am convinced that I could be free (or nearly free) of this condition if I could get a session of shockwave in every 2 months. Unfortunately, that's not financially possible for me to do. I get in three sessions over 4 days when I visit Dr. Andrews. When I leave there I feel terrific.
I am encouraged as this has been the longest the improvements have lasted after shockwave - 5 months. I want to get back to have it treated again before it relapses further.
kone
My battle to get functional has been waged over a 5 year period. At first I could not sit at all either. Shockwave was the only factor/therapy that enabled me to sit again. Before shockwave, I could not stretch either.
I was up in Ottawa/Cornwall in February, 2016, and had the best subsequent 5 months I have had in these past five years. I was able to sit, exercise, run, jump, and do normal things again. Now, I have relapsed a bit. I still don't have any pain, but I get a nerve sensation in the inferior rectal area that is creepy/strange. That tells me I'm still impinged in that area of the pudendal nerve. I hope to keep making gains in flexibility with stretching and in August or September go back to Cornwall for another shockwave session.
I am convinced that I could be free (or nearly free) of this condition if I could get a session of shockwave in every 2 months. Unfortunately, that's not financially possible for me to do. I get in three sessions over 4 days when I visit Dr. Andrews. When I leave there I feel terrific.
I am encouraged as this has been the longest the improvements have lasted after shockwave - 5 months. I want to get back to have it treated again before it relapses further.
kone
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make-it-stop
- Posts: 68
- Joined: Tue May 10, 2011 6:53 am
- Location: Chicago, IL
Re: New Person with Pudendal Nerve Disorder
Wow, Kone. Sounds like it is really working for you. I hope you manage to get back up there soon. I don't know if you've ever bid for hotels on Priceline, but that's usually what I've done in the past to get very reasonably priced hotel accommodations. When I saw Dr. Hibner in Phoenix, I managed to get a very nice hotel (Hyatt) for around $50 per night. For flights, I use points from either the airline or credit card. But I think the price of the actual treatment is what would kill me.
Could I ask how long the shockwave treatment sessions are? I read in a study that the patients in the study received very short sessions - something like a few minutes - but then I've read that Dr. Andrew's sessions are much longer.
Thank you for your stretching routine, btw. I actually have been doing those same stretches for years with no big difference. Actually, stretching resuces my pain a lot for 10 minutes and then reverts back to the same. I mostly need something to break up all of my trigger points in my pelvic and butt muscles, but I haven't found a good doctor to do trigger point injections in the Chicago area ever since my old doctor left the practice of medicine for some reason.
Could I ask how long the shockwave treatment sessions are? I read in a study that the patients in the study received very short sessions - something like a few minutes - but then I've read that Dr. Andrew's sessions are much longer.
Thank you for your stretching routine, btw. I actually have been doing those same stretches for years with no big difference. Actually, stretching resuces my pain a lot for 10 minutes and then reverts back to the same. I mostly need something to break up all of my trigger points in my pelvic and butt muscles, but I haven't found a good doctor to do trigger point injections in the Chicago area ever since my old doctor left the practice of medicine for some reason.
5/11: burning in all areas innervated by PN; self-diagnosed PN
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
Re: New Person with Pudendal Nerve Disorder
shockwave has the potential to break up your triggers. It worked for me.
In regards to the length of appointment, mine have been about 45 minutes in length. Dr. Andrews tries to place 25,000 impulses into the affected area each session. This is about 30 minutes worth of shockwave. The breaks he gives you and the analysis/diagnosis take up the rest of the 15 minutes.
Thanks for the tips on getting better motel rates.
kone
In regards to the length of appointment, mine have been about 45 minutes in length. Dr. Andrews tries to place 25,000 impulses into the affected area each session. This is about 30 minutes worth of shockwave. The breaks he gives you and the analysis/diagnosis take up the rest of the 15 minutes.
Thanks for the tips on getting better motel rates.
kone