New Person with Pudendal Nerve Disorder

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.

Re: New Person with Pudendal Nerve Disorder

Postby Violet M » Wed Sep 28, 2016 4:11 am

Mishell, if you do a search on "Glenn" in the search bar up on the right, you will get a list of postings other patients have made about Glenn. I believe he used to work with Dr. Andrew.

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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Re: New Person with Pudendal Nerve Disorder

Postby Mishell 27 » Wed Oct 05, 2016 2:25 am

thanks Violet
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Re: New Person with Pudendal Nerve Disorder

Postby hope man » Tue Nov 01, 2016 12:49 pm

I am a Physical therapist and former long distance cyclist and everything you wrote is very interesting.
I ;been suffering form Ed for a long time
.I just had shockwave about a month ago.
I did not see any progress yet.
everything started when i felt numbness in my scrotum and genitals areas.
the numbness went away the ed did not leave me.
Nobody check my pudendal nerve-I was wondering if the nerve was affected if pulsed electromagnetic therapy could help.
I was told that my circulation is wnl.
I have all the reports with me from rush hospital.
The Dr said i had a Pituitary gland dysfunction and for the last 6 months instead to get testosterone ,i am taking clomid
my T level went up around 500 but the free T is low-
I just went to the lab yesterday and I will have the results in few days.
I will discontinue this medicine and see if my pituitary reboots itself.
In the meantime i use viagra and cialis.
Have a nice day!
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Re: New Person with Pudendal Nerve Disorder

Postby konedog4 » Sat Dec 31, 2016 12:35 am

2016 Summary

I had two shockwave sessions this year, one in February, and another in November, my 5th and 6th sessions total.

The February treatment was concentrated on my right side only, as shockwave has cleared the left side. I made great progress after these three sessions, and had about 6 months of almost normal living. My symptoms were not entirely gone, but I could do just about anything, including sitting without a pad. My symptoms began to return a bit in October, so I scheduled the November visit. I just had two sessions on the right side. I am fairly certain that this last session helped me get back to near normal, as I can exercise, run, skip rope, lift weights, and sit without generating any symptoms. I can still feel that I have some impingement on the right side, but it is quite minor and there is no pain. I believe I am 85-90 % better from my worst state in 2011. To supplement my recovery, I continue to stretch at least 1/2 hour 6 days a week. Stretching has been quite helpful for me. I concentrate on three stretches and try to hold the stretch as long as possible. Shockwave alone would not have gotten me this far; I had to do the daily stretching to get the results I currently have.

I don't know what the future holds, maybe another session of shockwave in the spring if needed. I hope to continue to make significant gains in my pelvic floor and pelvic girdle flexibility with more stretching. My ultimate goal is to be completely rid of this condition. I'm close, but not quite there yet. However, I am encouraged I am going in the direction of recovery. I have learned that recovery is a lengthy process no matter what modality one chooses to follow. Improvements in my condition give me the confidence that I am moving forward in the right direction.

I hope 2017 brings breakthroughs for each one of us. I wish all of you well. I know how depressing this condition can be, and hope each one finds his/her way out of it.

kone
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Re: New Person with Pudendal Nerve Disorder

Postby Violet M » Sat Dec 31, 2016 3:45 am

Kone, thank you for your valuable contributions to this forum and keeping us all informed of your successes. I always look forward to hearing how you have improved and that you are doing so well. :)

Wishing you a great 2017!

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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Re: New Person with Pudendal Nerve Disorder

Postby konedog4 » Mon Feb 27, 2017 2:03 am

February 2017 Update...

I last had Shockwave therapy in Mid-November, 2016. It has been 3 months since those two sessions. I am happy to write that I have gained back a bit more freedom from pain and physical disability. As I have documented through the years on this site, I have found great improvements in my condition through shockwave, and have been back to Cornwall and Dr. Andrews 5 times. I continue to pursue shockwave because I continue to make gains. When I first began, I was in continual pain and could not sit down. I had pain standing, climbing stairs, lifting, bending, etc. The only position that was pain free was lying down. So I was doing a lot of lying down. I'd go to work, come home exhausted with pain and lay down to rest. I had no family life, no personal life, no enjoyment in hobbies, no social visits with friends. I was just in too much pain to enjoy life. Fast forward to 2017, and my past pain is past history. All of the things I could not do, I now can do. I have no pain sitting. I can sit all day if necessary. I come home from work and i have energy to do other things. I have a family life again. I can exercise and have a life outside of the syndrome of PN pain.

During the last sessions in November, I had just two sessions. Both were very painful as they were concentrated on one specific area of my anatomy. Afterward, and for several weeks thereafter, I felt "congested" in the area that was treated. This happens after shockwave and I've come to expect it. Shockwave creates this congestion, which is due to mild swelling and increased blood flow. This enables more healing in the area. I really concentrate on stretching daily to move the tissues and keep them from scarring. This is my opportunity to try to break down scar tissue and exact healing in the damaged tissues. So I've been really stretching the last 3 months and I am happy and grateful to write that I have made significant gains in flexibility, elimination of pain, and increased function. And these gains have stayed with me during this time. I am hopeful that the gains will remain in the months and years ahead. If I begin to regress, as I have in the past, then I will return for more shockwave. In the meantime, I continue to stretch and mobilize my pelvic tissues.

As I have written before, I fully realize that shockwave is not for all. But, if you have exhausted every other therapy and are still in pain and disability, I encourage those willing, to call Dr. Andrews in Cornwall, Ontario and discuss your case with him. I have found Dr. Andrews to be an expert in his field. If shockwave will not work for you, he will say so.

I tried physical therapy, steroid injections, walking therapy, and other therapies before I found shockwave. A member of this site wrote me and encouraged me to pursue shockwave. It has been a process taking several years, but I am so grateful to Dr. Andrews for his expert care. I could not have gotten better without his condition specific therapy.

I hope 2017 is a year of breakthrough and improvement for those who are suffering. I know your pain and my heart goes out to you.

kone
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Re: New Person with Pudendal Nerve Disorder

Postby Violet M » Mon Feb 27, 2017 5:11 am

Glad to hear you are having a great 2017, Kone. ;)
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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Re: New Person with Pudendal Nerve Disorder

Postby Thor1935 » Sat Mar 04, 2017 9:01 am

konedog4 wrote:Before using Clonazepam, my pain level was such that I could not comfortably sit for more than 20 minutes using a cushion. I would get so much pain in the perineum area. With 1 mg Clonazepam, I can sit on cushions comfortably for up to an hour or more. It makes my life much more enjoyable and bearable.

kone


Hello konedog4, its verry good what it helps you with your problem, but as we alll know some meds helps and people get a good result, but in other case for other people its not the same result, thats why we have to consult specialsit and folow his prescription, couse in my case that Clonazepam doesnt help me much ((! Thanks you!
Last edited by Thor1935 on Mon May 29, 2017 9:41 am, edited 1 time in total.
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Re: New Person with Pudendal Nerve Disorder

Postby kathyd » Wed Mar 22, 2017 5:36 am

Hi Mishell
Im not on this site often lately, but noticed u asked about Glen Cameron.
I went for shockwave in spring 2012. At that time Dr Andrew was in partnership with Glenn,
Right after I had my treatments Dr. A. and Glenn broke off their partnership (not sure why).

What I can you is that Glen,to my knowledge was not a chiropractor but a laymen who
had done lots of shockwave on various conditions according to him.

Glen did my shockwave treatments and Dr Andrew followed with chiropractic maneuvers to complete each treatment.
I was there for 5 days Mon - Friday.
While there I could actually sit! This started after my first treatment, but started to wear off, by the day we left for home (Saturday).

After getting home.. I remember having a flare ( i believe in my bladder issues)
My husband and I feared that Glenn may have gone a bit hard on me to ensure I got enough treatment in for the 5 days..
Who knows tho? I am a small boned women 5'6'' tall ..At the time I was very frail,-- under 100 lbs, so maybe the treatment was harder on me than
on someone of more average weight. Thankfully through the hard work and reassuranceof a great PT that my issues are not what I feared, I improveda bit,and even gained 25lbs.. eating normally again.
I have a more active life, tho I still have a long way to go.
Anyway at the time, we were told by both practitioners that I would need a few treatments to get true relief.
For various reasons we waited.
If I need to return, which is a possibility, I will see Dr A. as he is medical professional/chiropractor.

Just my 2 cents...you might want to research Glenn C. before seeing him.
He promised me I would be sitting for my long drive back to NJ. Dr Andrews was encouraging but made no promises.
I was not sitting on the way back (more treatments were prbly needed)

I will say that fear of future pain and stress etc, have been major roadblocks to my healing. I did way too much research throughout the course of my symptoms and created more stress, hence more pain.
Without this, one would heal much faster IMHO.
Just my experience..
Good luck!
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Re: New Person with Pudendal Nerve Disorder

Postby kathyd » Wed Mar 22, 2017 6:18 am

Hi Kone,
Ive been off this site for a long time so just re-read all ur posts including ur latest ones. Congratulations to u! I'm happy things are back to 'normal' in your life for the most part.
Thx so much for posting ur whole story and for responding to me ..I really needed to hear from someone who "gets" it.
You are such an inspiration to me.
My story is similar to yours as you read in my earlier posts.
I have made some strides in enjoying life through the work of my savvy PT, but I have my ups and downs and still must lie down in bed often, and can't sit yet.
Thus I still feel isolated from family and friends who get used to your being in pain; it becomes ' the norm' in some ways. i believe my fear is still a
factor, as my area is still in spasm, tho it looks much improved at our sessions.
My PT suggests her stretches and self Pt each week. I do a few stretches that feel good, but think I could be doing more. I
I remember your many posts on stretching, and how it helped you. Were there any that helped u, that could be done standing or lying down?
Did u meditate? That has been advised for me. I can do it at night but find it hard to quiet my mind during the day, tho I need to.

My hubby loves me and wants me to get better but I can feel his resentment, as he has has to pick up the slack in driving kids around and cooking
If Im not up to it).. Tho lately I've been doing so.
Im sure there is no shockwave in the US yet or we would have heard about it,but just wanted to check with you.
My husband saw a podiatrist this week for an ankle injury and learned about a pain treatment called Neurogenix. for patients with complex neuropathic issues that haven't responded to other protocols. He told him about my pain issues and the doctor said ..have her come in. Hubby said it reminded him of shockwave. (My hubby watched my 5 shockwave treatments so he remembers) but in looking at the pamphlet he gave me it looks nothing like the shockwave gun I remember!..I doubt it's the same thing.
Just wanted to see if you or anyone had heard of the above.
Thx very much and all the best to you!
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