New Person with Pudendal Nerve Disorder

[topkitena]

Violet, as of age I'm still 26 years old and should be in my prime and really believe I can recover. I've been meeting some old friends I've training with and they are very supportive and will help me with training. I know I have a fight ahead of me, but I will not let this condition determine how my life goes. I believe I'm not scared anymore, even if fail. After all sport was my life, and my heart is there, doing what I do best. You have to understand me, maybe I'm still young and stubborn, but still .

As far as pushing through PN pain, I've already managed to push trough it once, sort of. When my condition was really bad I decided "F*ck it, I'm going to ride a bicycle no matter of the pain and burning"", but without sitting on the seat. I was miserable for 3 months. Then on the 3rd or so month, pain slowly started to subside to the point where i was even able to sit for a while on the seat. I've quit riding eventually not because of PN, but I was really screwing up my knees, because it is very unergonomical to ride without sitting. After this I slowly begun to improve without doing anything. After telling all this to my PT, he said to me that he has never seen someone with such high tolerance to pain , maybe after all these years in martial arts I've learned to embrace the pain and not fear it, who knows, but from that point on my symptoms improved right up to this day. I'm not saying this is the right way to do it, just sharing my personal experience, nothing more.

Carl, as far as nutrition goes I'm open for any ideas, as I believe you have to fight the condition on every front possible in order to achieve results, so please share your information in front of everybody, maybe more people will benefit from it.

Thank you for your support!

[Violet M]

You have to do what you have to do, eh? You are still very young and have a lot of life ahead and maybe by having a positive attitude you will be just fine. I wish you all the best as you try to regain your life back.

Violet

[kathyd]

Hi Topkitena,
Thx for answering my questions.
I agree with Violet ..It really helps that you are still very young!
I also think your positive attitude can work wonders.. I think it can help all of of us.
Just be careful to listen to your body and take breaks if you feel pain.

We all know our own issues. I am middle aged; as I mentioned my pain began a year after the death of my dad, rather than due to athletics,
tho I have spent 23 years chasing 3 active children around! and taking them to their many activities!

I had 3 normal childbirths, but my painful pelvic pain symptoms didn't start until my youngest child was 6 years old!
----but just about a year after the loss of my Dad).
Later, I spent a few years resting, when needed, doing whatever chores I could, (when this sitting pain began). Rest sure feels good when the body needs a break.
But being virtually "stranded" in my own home, and not being active for years only worsened my pain!.. all I had to think about was the pain, so it just kept going on and things got worse, tho I did nothing to aggravate it! I literally did not sit all for a few years, except to sometimes kneel at a low table to eat, or perch at special events,etc. So re-fraining from activity was not the answer for me.

Finally, the findings and opinions of my well trained caring PT and her urologist partner) matched my suspicions that the emotional component (grief, fear and the anxiety about pain! ) seem to be my root pain source.
It may be caused by years of research and the grim info I found on the internet (back in 2006 -2007 and the earlier years of my pain. That was my attempt to heal myself since most docs were not very versed in pelvic pain in my area, (NY NJ),tho the caring ones tried.

Thankfully, more recently I found a caring local doc willing to learn and work with my PT,and and a pain doc who seems to care.
i will experience after pain from some activities that involve even brief moments of sitting, and due to my middle age, I guess bouncing back to baseline pain takes longer! Also my providers say that having avoided these activities for 4 years! -- the body/brain needs time to re-adjust!
But getting out on my own, is so freeing and so worth it.

Again I understand your desire to continue your athletic activities, and socialize as much as possible! The latter helps a lot!
Good luck with you athletics , but listen to your body, and rest when needed.
Kathy

[topkitena]

Kathy, I too think maybe there is some emotional component in my case, because prior to my first symptoms I was through some pretty rough times emotionally but, eeh, who knows...

[konedog4]

2 month post-shockwave report.

It has been exactly two months since my last shockwave treatment. Today I had my best day in a very long time. I had no pain, had energy, and was busy cleaning house (bending, squatting, straining) for a great part of the day. I almost felt "normal" again. It really felt great to be able to be active again, and not have to even think about pudendal neuralgia. I am exercising again and lifting weights again too (mostly upper body, as I am protective of straining the perineum). I still sit on cushions, as a protective measure. I can sit for hours again if I have to. I am gardening, doing yard work, fishing from a boat again. I especially enjoy fishing, sitting in the boat (cushion of course) and relaxing on the lake for hours. That is therapy in itself. After 4 years of inactivity this feels really good. I am no longer an invalid.

Yet, I still have PN. I can feel it still just a little bit when I sit in certain positions on certain chairs. Perhaps this will resolve with time, and then again, maybe I will try another session in Ottawa with Dr. Andrews. So much positive progress was made at the last session. Dr. Andrews knows exactly where to apply the shockwave and this makes therapy more focused and much more effective. I am hopeful that perhaps in time this condition will only be a painful memory and not a painful reality.

Shockwave is expensive. I have to save for about 6-12 months before I can afford therapy. And then I am "broke" again. Yet, the gains in freedom from PN is worth all the money I have spent. It is true that we take our health for granted most of the time and when we lose our health, we will spend to try to get it back.

I have made no progress in finding out why shockwave is not available in the US for PN. I will get an answer however.

kone

[nyt]

konedog4, I am so glad to hear the shockwave therapy has been beneficial for you. I haven't heard of anyone in the states either that performs this procedure.

[konedog4]

Shockwave is not the cure-all for everyone, but has been quite effective for me. I am fortunate in that regard. When my inquiries are finally answered in regards to shockwave in the USA, I will post the answer.

I want to keep posting what could be a success story about PN, as when I first came on this board many years ago, there were few success stories. I continue to post as an encouragement to others to keep seeking. I was a virtual invalid for nearly 3 years, and all I could manage was work and then come home and collapse due to the pain, rest up and then repeat the cycle x 5 until the weekend, where I would rest up and get ready for Monday again. It was terrible. I lost a lot in those three years, more than I care to detail.

This is a little-known, terrible condition that robs the sufferer of an active vital life and leaves the sufferer with pain, despair, and a sense of hopelessness.

Hopefully, my posts give hope where there was none before.

I sympathize with all of you who have not found a solution. Keep trying, keep praying, keep hope alive. We don't know what tomorrow may bring.

kone

[Patty]

Kone very well put your words of encouragement. My experience with shock wave therapy has been with plantar fasciatis. I suffered with this for years due to many years of running. I was being cared for by a podiatrist that kept encouraging me to get shock wave treatment that was guaranteed to cure my pain. It was so ridiculously expensive I was never able. He told me that the insurance companies did not pay because there was not enough evidence that it worked. Of coarse they paid to have the tendon cut in your foot but not something that was more conservative in nature. I'm sure it is the same with PN. Not enough evidence it works but will pay for decompression surgery which appears to have no guarantees.

[konedog4]

I would pay out of pocket for shockwave therapy closer to home. First, it is effective treatment for my PN condition. Second, I don't have the expense of flying to Canada, renting a car and a motel for nearly a week. I sent out some more letters but have yet to receive a response.

kone

[kathyd]

Hi Kone and everyone,

First I wanted to say how happy I am for you that your work with Dr Andrew has helped so much in your recovery. It's so wonderful to hear that you are able to
sit for long periods and now live life the way you choose...thank you for posting your story in such detail. It is an inspiration for all of us on these to know that you can get from "there" to where" you are today.
Thx for your detailed account of your story with Dr Andrew. I had a good experience with him at my first visit in 2012, and only hesitated to go back for a few reasons.
I think his former partner Glenn may have' overdone' the shock wave therapy on me-- Back then, Glenn applied the shock wave gun, and that could explain my painful relapse which started just as we were about to leave Cornwall, Canada. I was there for the initial 5 day treatment and Glenn's goal was to give me as much as I possible...so I could get the most benefit.
I could tell even then, that Dr Andrew was less aggressive even in the way he described the program. He didn't promise anything.. while Glenn all but told me I'd be sitting for the ride home from Canada! That was not the case!
Im glad to hear that Dr Andrew is working on his own now. I also found him to be extremely knowledgeable regarding pelvic pain.

You've given me much to think about. Tho I didn't have a dramatic incident that started this pain, I did have a fall on my tailbone in the time frame this all began. It's also said that my 3 vaginal childbirths or the episiotomies given at the time could be causal. Who knows.
Since I did actually "sit" for about 4 days while in Canada, it's certainly something to re-consider, if I can convince my hubby. Tho he is loyal and would never leave me, he prefers to bury his head in the sand and pretend I'm not in chronic pain,.. his way of coping. He's made it clear he does not want to even discuss the pain issue.
Conversely if I am having a good day, and am acting carefree or happy he may act differnent. This is Understandable after all these years of pain, but hard to have him turn his back when at times when I need him the most. But I'm sure many folks have been through this or much worse.
I hope to get him to read some of your posts if I bring up the topic of Dr Andrew.. Over the years he's refused to read the Pudhope site but done his own research instead.
I think seeing your very detailed post would be helpful ...so again thank you!

Thx also for your work in trying to get shock wave approved in the US..So sorry that nothing has worked yet in this area, but I appreciate the effort!

I want to write more about the subject about faith and how you feel i played a big part in your healing. I agree ..and would love to speak to you more about prayer and healing. I am off to bed since it is very late, but will write again soon, At any rate, thanks so much for the prayers you have said for me! I really appreciate it and will continue to keep you in mine.
Best wishes Always !!
Kathy