Health Organization for Pudendal Education

Before I was afflicted with pudendal problems, I was a casual runner, and I really enjoyed it. But once the injury happened, I had to give up running, as just lifting my feet too high brought on pain. I recall being at a wedding dance shorting after the injury, and I could hardly dance with my wife and my groin area was so tight and felt like it would spasm at any moment. I also could not stand without pain. I started swimming and walking as physical therapy in November of last year. I tried to do a session of swimming or walking at least 5-6 times a week. At first, I could not do much swimming for I could not kick without groin discomfort. I'd get a full feeling in my perineum and I would back off. Same thing with walking; if I tried to go too fast or stride too long, the possibility of a spasm zinger was always present. But over time, I began to kick more while swimming, and I strode out my steps longer and longer and walked longer distances. In March, I was able to swim 91,400 yards, or about 2,900 yards a day. And in March, I began to add some slow running to my nightly walks. Tonight I mostly ran my 4 mile course. I find the swimming and running cause my perineum to relax. I never feel any adverse effects the following day.

I am going to continue this therapy as it is slowly improving my fitness and ability to function better. My question to my fellow friends here is this: Is my experience unusual, or are the people that post here doing the same things as I am? I still have difficulty sitting for anything over an hour, even with a padded seat cushion, but, 6 months ago, I could not sit for 10 minutes, so that has improved too. I am typing this note in a kneeling position in front of my screen, so as to avoid unnecessary sitting pressure. I am interested in hearing from others on this board as to what they can and cannot do. I find that when I stretch, my symptoms get worse, especially symptoms centered around my rectal area. So I have avoided stretching, as it sets me back rather than sends me forward.

Please feel free to comment on your own experiences with physical activity.

Best wishes to all and asking that we never give up hope.

kone

Great to hear that you are jogging that sounds very posative. I can walk only on flat firm surfaces
but cant even walk up a very smaill incline without causing a bad flare up later that day or the next day which can laste for ages.

I have found that for me doing piriformis stretches seems to help loosen things up and it never seems to agitate my condition if I dont over do it.

With regards to swimming that is out the question as I cant even have a bath without t the pressure of the water causing pain in the private area. Its very intersting how things can be very varied in terms of what causes additional pain from person to person.

Regards,


Jacko

Kone, that's great that you are able to do more now. I saw in your other post that you will be seeing Dr. Andrew. Good luck with that.

I can walk for several miles a day but there is no way I could have done that before surgery. I started jogging a few weeks ago but pain started coming back so I quit right away. My ligaments are bad so I just have to be really careful.

Violet

I still have problems seated for anything over an time, even with a cushioned chair support, but, 6 months ago, I could not sit for 10 moments, so that has enhanced too. I am writing this observe in a kneeling place at the front side of my display, so as to prevent needless seated stress.

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I have difficulty sitting for anything over 20 mins 3 times a day, I try to save those precious sitting times (on a cushion only) for meal times with my family. I haven't been able to walk at all because of perineum friction pain. I was planning surgery in Feb/March this year but put it off as its such an invasive procedure with success rates that don't encourage me in that direction quite yet. I'm giving myself time and trying more conservative measures. I recently tried applying 5% lidnocaine to my perineum 2-4 times daily with moderate success. I am now walking short distances slowly without too many ramifications and my goal is to continue walking with the hope that over time the healing process will allow me to do more. If I play a careful balancing game I can now do all housework as well as cooking with no pain which is only provoked by sitting. I'm of the opinion that my precious sitting time might increase with the benefit of time and consideration to my pudendal nerve. I've gone from constant bed time laying flat to the activities mentioned. The pace is as slow as a snail but I've figured that's got to be pretty normal for this nerve we are all dealing with. Swimming is unfortunately out because I have developed an allergy to the strongly chlorinated water of our public pools,as well as a stinging perineum!! I would actually like to know what activity might also be possible that may not harm the nerve but am enjoying the slow walking at least as it gets me to our local shops so I can get groceries and have a takeaway coffee and feel a bit normal.

Wishing everyone a better day, Judy

Hey, Judy. Glad to hear you are improving a bit and are able to avoid surgery since you seem to be healing.

I would be scared to introduce a new exercise when you are doing so well. I don't really know of anything besides walking and swimming that are considered OK for people with PNE. Maybe some upper body exercises that don't involve any pelvic floor tension?

Violet

Hi Violet, yes you're right about just walking. I feel I am improving. I'm seeing a PNE specialist and decided to give myself the opportunity to heal before considering surgery. I'm having small gains and two specialists I've seen which gave neuropathic diagnoses' indicated healing periods of two to three years. Very slow but very worthwhile if I am to avoid surgery. In relation to that period I'd say I'm on track but time will be the test

Hi

I can do pretty much anything after working out, stretching & dieting for few months now. İts not correct what they say here about never recovering. İt should not be said. İt just scares hundreds of people reading it

Try GAPS DİET
&
Buteyko breathing method.

İts all to do with the Gut, even though most wont agree. İ did so much reading. İ had the pain. But once you understand how & why with a open you will see other options to recovery. İ hate the jibberish talk here about people opting for surgery but in forums stating they're thankfull that they had this surgery but in another post stating the crazy pain over again....


İ also can run, ecxercise, dance, do normal stuff & swim the way i want. İ can do weights jogging for few hours. it only gets sore if im not doing the correct diet

I'll look into your recommended diet and breathing methods Leilaa - any information on the subject is good. It's then up to the sufferer to chart their own direction. Our cases are all so complex and so different but I've opted for conservative measures, I think I'll regret it if I don't. I think walking should be all I do for now as it feels right. Thank heavens I've moved in the right direction so far albeit very slow, I'll report progress if and when or should I be more positive and say AS it happens!!
Judy

Judy, hopefully someday you will get back to more than walking. It's great that you are progressing the way you are. Working out is what got me into this mess and special diets did not help. Now that I am so much better I am having a great time with doing "The Firm" exercise protocol and feeling very fit again.

Best,

Violet