Health Organization for Pudendal Education

From my understanding of the shockwave issue in the USA, the therapy has only been approved for a limited number of conditions: Plantar Fascitis, and tennis elbow. I very much doubt if any provider would use shockwave "off-label" due to liability issues. This is unfortunate, as I am a case example of someone who found relief through shockwave for PN issues.

I am now 2 months post-therapy and am feeling better each passing week. I have very few symptoms. I feel about 85-90% "cured" and I use that term very cautiously. That said, I still have to be careful not to do certain activities, namely lifting heavy weights (especially in a squat position) , bicycling, or sitting on certain chairs that put undue pressure on the perineum. My left side has completely cleared up, but my right side is still problematic if I engage in the before mentioned activities. I continue to use a cushion while sitting, just to protect the right side pudendal nerve from further trauma. Other than that, my life is pretty much "normal" again.

When I came back from Canada in September, (both sides were vigorously treated over 3 days), I had much more pain than when I went up there. I had never had a time where I felt worse after shockwave therapy previously, so this was a surprise. However, the shockwave was given in a focused manner directly on the areas still giving me trouble, so I had a lot of 'microtrauma" to the area, probably more energy than I had had in previous trips. That probably explains why I had increased symptoms. By my understanding, shockwave works by jarring and injuring the tissues, stimulating new blood flow. It also can break up calcifications in scar tissue. I think I tried to achieve too much in too short a time period in my last therapy session. I most likely got swollen, which increased pressure on the tissues and resulted in the increase of pain and symptoms.

I have been stretching nearly every day to keep the pelvic floor limber, and this has helped immensely. (I know some people cannot stretch, as it makes things worse). I could not stretch as I am now until I had shockwave. I hope to continue to get better and better, but I still must be cautious not to push myself too hard or engage in pudendal risky activities.

kone

One of the most beneficial stretches for me has been the seated splayed leg forward stretch. I am careful to warm up the hamstrings and calves with individual stretches first, but once I get to feeling limber, I spread my legs at a 90 degree or more angle and then lean forward and grab a fixed handhold that allows me to pull myself forward and stretch the pelvis, perineum, hamstrings, and iliac crest area. Since doing this stretch, I have made more progress in limiting discomfort. Another stretch that has helped is sitting on the floor, placing my foot soles together in front of me, (knees as close to the floor as possible), and then leaning as far forward as possible. I am able to touch my nose on my insteps, and am working on getting my nose on the floor. You can vary the intensity of the stretch by positioning the heels either close to or away from the perineum. I find the longer I hold the stretch the better it loosens up the perineum area. I try to hold each stretch for 10-30 seconds.


I know stretching is not for everyone, in fact, it can cause flares in many people, but if stretching is possible for you, try these out.

kone

As I enter my 6th year with this condition, I post a New Year update:

As I have explained before, by PND has responded to shockwave in a positive way, so I went to Ottawa twice this past year for shockwave treatments. Shockwave has eliminated the left sided pudendal disorder, however, I still have right sided pudendal disorder. Thus, the shockwave concentrated on the right side. My last shockwave treatment was in September (2015). Since that last treatment, I have really been pushing the stretching, as I believe that the more limber and loose I am in my groin, the better (less symptoms) I should have. So each day I spend one hour stretching. I mostly stretch my hamstrings, groin muscles, and leg muscles. I have made significant progress in all these areas, and thankfully, I have less symptoms. I can actually feel the area that is contracted on my right side, so I really concentrate on that group of muscles and connective tissue. The best stretch I am doing now is just leaning forward in a sitting position and holding my toes as I stretch forward. This stretches the areas that hurt in my perineum region. This stretch has done more to make me feel better than any other stretch. I hold it as long as possible.

I feel like I am making progress, sure slow progress. So, I am encouraged and will continue the stretching. I have been actively stretching for over 3 years now, and only now is that stretching producing a marked and sustained reduction in symptoms. I liken stretching to trying to fell a tree with an axe. It takes many blows to fell the tree, and so likewise, it takes many sessions of stretching over time to make a difference.

I am not on any medication for pudendal disorder any more, and this in encouraging too.

We all need a sense of hope in this condition. Hope that we can get better. I encourage everyone in this regard to pursue activities and therapy that gives you hope of getting better. May 2016 be a hopeful year for all of us.

kone

Thanks for the update Kone. It's always good to hear some good news and it's helpful to hear how ESWT has worked for you. Hope this year will be a good one for you!

Violet

February, 2016 update

During the week of February 8 - 13th, I had three more shockwave treatments in Cornwall, Ontario, administered by Dr. Andrews. I went for my fifth time because I still had inferior rectal nerve symptoms when urinating (an unusual tingling sensation). I only have symptoms on my right side, so that was the only side treated. I noted immediate relief of the symptoms. No more tingling upon urination. I also had a very comfortable plane ride home and did not need a sitting cushion. I can now sit for extended times on chairs, impossible before I began shockwave several years ago. I am encouraged by the gains. I continue to stretch every day for 30-45 minutes to keep limber and keep tissues mobilized.

Has anyone heard of Dr. Jordan in Santa Monica California? If so, please share your information.

Update

Two weeks from 5th shockwave session with Dr. Andrews . The gains we made have not regressed, in fact, more healing and improvement is taking place. I have about a 90% improvement score since beginning shockwave about three years ago. The last session was really helpful in addressing sitting and uninary issues . When I began this ordeal, I was miserable with bilateral severe pain. Literally, the only position I had no pain in was the prone in bed position. Now, five years later, I have no significant pain and am back to leading a normal life. Shockwave and daily stretching were the two main factors in my recovery. Shockwave created an improved condition for healing, and daily stretching furthered the gains made through shockwave. I continue to stretch each and every day, as I now realize how essential it is for me to remain symptom free.

I still avoid squat exercises, as well as bike riding. These two activities are what caused my condition originally. I would love to verbs known my bike again, but I just cannot risk it. Perhaps this willbeboossible again, but not yet.

I repeat as I have in previous posts that shockwave is not an instantaneous cure, nor is it comfortable. It does it work for everyone, but I found that it can create conditions for better healing. I am quite certain that had I had monthly shockwave treatments here in MN, that I could have gotten better much sooner. However, much to my dismay and disadvantage, the FDA has not approved it for perineal applications in the USA.

I have renewed hope that I can be fully recovered from this agonizing and depressing condition. It will still require daily stretching and moderation in my activity. It may also require more shockwave treatments. I am encouraged, greatly encouraged, that full recovery is possible. How different my thinking five years ago when local expert Dr. Antolak told me I'd likely have this condition for the rest of my life. I was pretty depressed back then. Dr. Antolak had never heard of shockwave, and only offered cortisone shots and perhaps the prospect of a very difficult surgical procedure.

But then I found this site, and one of the contributors encouraged me to try shockwave. That person literally saved my life. I am thankful to all of you who have encouraged me in this difficult and trying journey. And while I'm not at the end destination yet, I can finally enjoy the process and the journey.

Kone

Really happy for you, Kone.

Kone,
Always great to hear your sucessful journey and keeping this thread going so others can take advantage of this opportunity. It seems the stretching is a common factor since my surgery PT still emphasizes that especially after flares.
Janet

Good news!