New Person with Pudendal Nerve Disorder

[konedog4]

Kathy,

I wish you well and hope you get better too.

Dr. Andrews is a very knowledgeable practitioner. He knows how to treat PN. What I did not anticipate is how how long it would take the pudendal nerve to respond and heal. As I have written previously, my last treatment with Dr. Andrews was a year and a month ago. I felt a bit better after that treatment (3 days), but did not feel significantly better until October, nearly 8 months afterwards. In that 8 month period, I continued my stretching, I had an Alcock's tunnel bi-lateral injection in July, and prayer in September. In October and November I started feeling noticeably better and I have continued to feel better month after month. Could it be that the pudendal nerve needs a year to respond/heal in response to shockwave therapy? I know without a doubt that shockwave started my healing process, for i could not stretch or exercise until after that first treatment week in October of 2012. I believe the stretching helped as well. I cannot say if the steroid injection helped all that much because I did not feel any better immediately or even weeks afterwards (that was about my 5th steroid injection). However, I did have an "ideal" Alcock's injection, in that all the areas were numb that should have been numb from the injections. I had never had an "ideal" injection in the previous 4 tries. So perhaps it is a combination of all the above. I really cannot explain it because too many variables are present.

I do know with absolute certainty that shockwave started the process of healing. Hopefully you can find your start too.

I am going to write a bit more about the stretches I have been doing. I don't recommend the stretches if they cause a flare up afterwards. Before Shockwave, I could not stretch without making things worse. After Shockwave, I could stretch as much as I desired with no flares. My conclusion is that shockwave loosened up the bound/scarred/restricted pudendal nerve to some extent and enabled me to stretch thereafter. I have always believed that stretching is essential to further loosen and keep limber the perineum area. Therefore the more one can stretch and stay limber, the better one should be.

kone

[konedog4]

May 2, 2014: I write this post to encourage others who are suffering. There are so (apparently) few success stories regarding PNE that I feel almost compelled to continue to encourage those suffering from this condition to not give up hope and to seek additional care (if the present care is not bringing about a change). I have previously detailed my experiences with two sessions of Shockwave therapy with Dr. Andrews in Cornwall, Ontario, so I will not repeat this again. Suffice to say, the treatment I received in Cornwall was the turning point in my recovery. A year ago this time I was still having significant PNE issues with tightness and some pain when I'd exert myself. I love to swim, and I could not do a forceful whip kick (doing the breaststsroke; this is the kick that all the PN doctors warn not to do). Well, this month I began swimming again, and I found that I can kick as often and as hard as I wish doing the whip kick again. I have no pain during or after swimming now. Previously I had to limit my swimming to just the crawl stroke (minimize the kicking) because it would hurt too much afterwards. That is gone now.

During the last month I have begun to stop bringing a sitting cushion with me wherever I go (school functions, work functions, eating out, movies, etc). I just do not need it anymore. I continue to use the cushion at home when I sit for extended periods, not so much because I need it, but I am somewhat afraid that I might reinjure myself and have to go through this all over again. During the last week, I have not had any PN discomfort, tightness, or pain. I still notice a slight paresthesia around my rectal/perineum area, but it is so minor I hardly notice it. I used to have a fairly large area that had little feeling in my perineum (besides pain of course). I also found that I can run again. Before, the jarring from running always started the pain in the perineum and then I'd have to stop. That is gone too. I can now run for up to an hour with no side effects of PNE. Of course, my inactivity over the past 3 years with PNE has rendered my physical strength and stamina to almost invalid levels, so vigorous running is yet impossible as I am so out of shape. I have been working on my strength by lifting hand weights and doing push=-ups, dips, and pull-ups. I could not do any of these before without terrible cramping/stabbing pain in the perineum. My strength is returning.

Recovery is possible from PNE. I had it for 3 years and I thought my life was over. I could not do anything but lay down to relieve the pain/discomfort. I became incredibly disheartened and depressed. Then, back in the summer of 2012, a person from Chicago suggest I try Shockwave. I did, and it started the turn-around and improvement. It gave me my life back. I have several other physical challenges facing me yet, but looking at PNE in my rear view mirror is a welcome thing.

I wish to add that Dr. Antolak of the MAPS PAin Clinic in Edina, MN, has announced his retirement. I suspect that the clinic will continue to treat PN patients, but the expertise of Dr. Antolak will be gone.

kone

[Violet M]

Thanks for posting your inspiring story, Kone. So happy for you!

Violet

[konedog4]

August 2014 Update

Having once been completely crippled by PNE, I am again posting to offer encouragement for those who are suffering from this terrible malady. As you may already know, I received shockwave therapy in 2012 and 2013 to treat PNE (my last treatment was in February of 2013). Since the fall of 2013, I have made remarkable progress. I am now running again as much as I want. I am skipping rope for exercise. I sat at a baseball game last night for 4 hours with no ill effects thereafter. I am doing push-ups, pull-ups and dips with no pain, no aggravation of PN. I am able to climb stairs again with no perineal pain. I am still guarded in some activities, and I still sit on a cushion (more than habit than need) but the trend continues to be more healing and less and less PN neuropathy. I am wondering if perhaps the Pudendal Nerve has taken this long to heal after shockwave therapy?? I knew I made progress with the very first shockwave therapy because I could sit for 3 minutes with no pain immediately after the first session therapy, as I could not do this before therapy. I could also squat without pain. So I knew something had changed. Perhaps (I'm theorizing) the PN nerve was freed from its scar tissue/entrapment after that first therapy. Has anyone experienced anything like this delayed healing after shockwave or surgery? Is the pudendal nerve so damaged from the initial injury that it takes a year or more to return to normal function??? I am still doing stretching of the pudendal area and muscle attachments several times a week and this is very helpful in terms of staying limber and keeping the pudendal nerve from rescarring and adhering to adjacent tissues. I know shockwave therapy may not be for everyone, however, it is appropriate therapy for many people with pudendal disorder. I am grateful to Dr. Andrews for his expert therapy. I am also eternally grateful for those that prayed for me and laid healing hands on me. I praise ther Lord for this healing.

Three years ago I was in such despair. I was in a really dark depressed place. But now the darkness has lifted and I am most grateful. My message to all is this: don't give up. If I can be healed, then perhaps so can you. Try different therapies to see what might work for you. Ask for healing prayer. I will continue to post to encourage all who participate in HOPE.

konedog

[Violet M]

Kone, I believe you are right about the nerve taking awhile to heal. http://www.medscape.com/viewarticle/480071_5
I was told by Dr. de Bisschop that you especially have more chance of healing if the myelin sheath is damaged as opposed to the axons. Glad to hear you are still doing so well.

I think what you say about ESWT being helpful if scar tissue is the problem makes a lot of sense. If the problem is due to a ligament compression or entrapment it seems less likely to me that ESWT would help but I could be wrong. I have no peer-reviewed literature to back up this theory but it just makes logical sense to me that scar tissue would be more easy to break up than a ligament.

Take care,

Violet

[bikelover]

Glad to hear you're still doing better Kone! Unfortunately I did not have the same experience with ESWT, but I'm still fighting!

[konedog4]

September Update

Healing of Pudendal nerve continues. I consider myself greater than 95% healed. I can do all my daily activities now with no pain. I do not need cushions to sit any more. I feel terrific once again. The depression I had from the limitations and pain of PN is fading. There are only two activities I am avoiding - bike riding (which I used to love to do), and exercise involving squats. At some point in time, perhaps next year, I intend to try both of these activities too.

I intend to write a story of my journey and post it in the "successful stories" section on this website. I avoided writing it until I was sure that a complete cure was a reality. Now that I am almost there, I am confident that the last 5% of recovery will happen before the end of this year. I will post a note here when it is completed.

I continue to exercise vigorously and stretch my pelvic area and hamstrings 3 x a week. The stretching really helps keeps me from relapsing.

My recovery started with shockwave therapy, which began in October of 2012. Yet, recovery was not evident even after my two (weeks long) sessions with Dr. Andrew. My last session with him was in February of 2013. I did not feel significant recovery (defined as much less pain to prolonged sitting and exercise) until December of 2013. I noticed I was getting better in the fall of 2013, but the recovery was very slow and really did not become evident until around Christmas time. I have been getting steadily better since then. Theory: perhaps shockwave broke up the scar tissue that resulted from my initial injury in 2010 (bike ride). Then after shockwave, perhaps the nerve required a long time to heal? I knew after the very first session of shockwave that I was better, as I could sit for 3 minutes without pain, something impossible before shockwave. And I continue to improve 2 years after that initial therapy. So my message to those who have shockwave is this: if you notice any improvement, however small, take that as a sign that shockwave therapy may improve your condition. Don't expect an immediate overnight recovery after shockwave. I suppose it is possible, but nerves take time to heal, and even after surgery, the doctors all say that recovery cannot be assessed until after a year or more has passed. I went into shockwave therapy with the attitude that once the nerve was freed from the scar tissue, that I would be immediately better. I was completely wrong about this. My expectations were totally unreasonable. Nerves require time to heal. Be patient. If you got better from shockwave, be encouraged that more improvements are possible over time.

Dr. Antolak was amazed by my recovery. The steroid injections he administered did nothing for me. He was very intrigued with shockwave therapy, but was nearing retirement and did not pursue this therapy in his practice.

I cannot fail to mention that my recovery was also a result of prayer and divine healing. This is a story in itself, and I will detail it in my success story.

I encourage those who are battling this disorder and trying to find a solution, to not give up.

[stephanies]

Kone,

I am happy to hear of your recovery and you have provided great follow up to your treatments for others to reference. I must ask, if you know PN pain was can be brought on by biking why on earth would you consider getting back on a bike at any time? Your nerve may continue to be vulnerable to irritation or injury. I was virtually pain free for 5+ years and my pain came back. The fight is harder the second time and there are no guarantees. Just my 2 cents. My best to you.

Sincerely,
Stephanies

[Violet M]

Konedog, it's great that you are still recovering but I am wondering the same thing as Stephanie. My condition was so bad before surgery I guess I would think twice (or more! ) about taking the risk of going back to that state when there are plenty of other activities I enjoy. There are just certain things I feel like it's wise to avoid.

Violet

[GregT]

Has anyone ever asked the question how much these shockwave treatments cost in Canada? I guess if the series of treatments is too expensive that it really wouldn't matter unless we were all rich, but without really knowing much about what it really is, it's hard for me to even guess at the cost. I figure it must be a lot or else people would be going even if they had to pay the full price out-of-pocket.

Thanks.

Greg