Health Organization for Pudendal Education

I agree w. almost everything you said Celeste. Except for this bit...

Celeste wrote:the perfect is the enemy of the good

I think in this case the two don't have to be mutually exclusive. 'The good' (ie. the solutions we have presently) have helped a lot of people. But that doesn't mean we shouldn't keep striving for 'the perfect' (I don't think anyone would say there's a flawless, 100% guaranteed fix for this condition yet).

And I have to say, what I found ironic about this thread is that all day long people post on this very site complaining about docs laughing off the notion that they have PNE or that it even exists. But when someone posts an article that puts forth a new idea about this condition, people are quick to exhibit the exact same behaviour...ie. brushing it off w.out even really looking into the details!

And given the current state of the surgical options available (risks still associated, not guaranteed to work, expensive, etc.), we just can't collectively afford to take that kind of attitude. Frankly, we need to welcome anyone who's attempting to come up with a better fix with open arms. And that doesn't mean we automatically believe what they're proposing, but I feel we need to at least give all research in the field a fair chance (research on this condition is so few & far between that personally I'm grateful to anyone who's even chosen to focus on it).

PS: "if a person is unable to continue doing the things they're most passionate about in life, how 'cured' are they really?"

Pelvis Stressly wrote: But when someone posts an article that puts forth a new idea about this condition, people are quick to exhibit the exact same behaviour...ie. brushing it off w.out even really looking into the details!

And given the current state of the surgical options available (risks still associated, not guaranteed to work, expensive, etc.), we just can't collectively afford to take that kind of attitude. Frankly, we need to welcome anyone who's attempting to come up with a better fix with open arms. And that doesn't mean we automatically believe what they're proposing, but I feel we need to at least give all research in the field a fair chance (research on this condition is so few & far between that personally I'm grateful to anyone who's even chosen to focus on it).

PS - I agree so much with what you said in two of your posts - and one makes certain decisions about their life. For now, if I could be content to lay on the sofa all day, I would be pretty close to pain free. But considering my former very active life, that's not mentally possible. For me, that would be dying a slow death. If a "cure" for me is not being able to get back to athletics, it's not a cure at all. I'm 51, I am very well aware of my age limitations - I can't go out and run 6 or 9 miles like I used to, I can't lift for two hours in the gym and even pre-PN, I never had the blessed genetic inheritance to be a "hard body" (although I've tried). But pre-PN, I've always hoped that until I reach my death bed, that I could continue athletics to some degree. It's like the gatorade commercial "it's in you".

The current treatment of PN leaves so much to be desired. Granted, there have been many successes with current surgical options (and they are happily going on with their lives). But those of us that sadly come here each day desperately seeking hope and options are the pioneers of advancement for this condition. I fantasize about the day when there is no forum for PN/PNE, but just a website that tells about the condition and where to go to get 100% fixed.

Amen.

Pelvis Stressly wrote:I agree w. almost everything you said Celeste. Except for this bit...

Celeste wrote:the perfect is the enemy of the good

I think in this case the two don't have to be mutually exclusive.

Okay. I hear what people say--they want something that they consider to be better. What there is, is not good enough.

My question is, how long are you willing to wait for what you consider to be the perfect solution? Would you be willing to accept that your condition permantly, if what you want is not made available to you? I suppose it's idle curiosity on my part, but I wondered if any of you had given any thought to a calendar. Not deciding is a decision, in other words.

Celeste - for me - I'm biding time. My next step is my visit with Dr. Hibner in June. If this is not fruitful, then I will probably trek up to Canada and have the shockwave. If that is not successful - I might consider Dellon (finances permitting). If these don't pan out, maybe neuromodulation, maybe pulsed radiofrequency. But I haven't yet decided how far down this road I'm willing to go. Sometimes the intervention is worse than the disease and sometimes, as they said in the movie, Pet Cemetery, "sometimes dead is better". I just don't know yet. I'm trying to manage one hour at a time, one day at a time, until I can't anymore. Then, who knows? Anyway, at this time, especially with the information from Dr. Ansell and my other two Houston doctors I've consulted, I am not considering the TG surgery.

Celeste wrote:My question is, how long are you willing to wait for what you consider to be the perfect solution?

Obviously I can't speak for everyone, but for me, I'm glad I haven't rushed into surgery yet. I was very close to going to see Beco a few years ago, but then opted out when I learned he now severs the SS lig. in all cases (& I'm not sure what side I'm on in the heated 'Should Ligaments Be Severed?' debate, but I'd rather stay safe than sorry).

And since that time, all the info re. Aszmann & Dellon has come to light on the board. Firstly, their procedure is much less invasive than the more traditional one I was considering. And secondly, I think it targets my specific symptoms a lot better than Beco's approach.

Obviously until I have the surgery, all of the above is just conjecture. But it's looking more & more likely that I'll be able to put it to the test soon.

Now my turn for a saying..."fools rush in" (but saying that, I totally realize that if may pain levels were higher, like many others on this board, I may not have had the luxury of biding my time, waiting for new developments to arise, as I have).

Faith wrote:Was this article really published? Well, at any rate good for him. I'm glad he didn't have PNE!

I have seen this article also. I believe this a case proving that one can have Pudendal Neuralgia and not necessarily have PNE.

PN-SufferVT wrote:I believe this a case proving that one can have Pudendal Neuralgia and not necessarily have PNE.

The above scenario may be true, but don't think it's what this particular article is saying. In the 'Case' section of the paper, the authors clearly state, "Palpation in this area reproduced the 9/10 pain in his penis and perineum and caused fasciculations in the surrounding buttock musculature. A working diagnosis of pudendal nerve entrapment was reached."

And the title of the article itself is, "Pudendal nerve entrapment in an Ironman athlete: a case report"!

Pelvis Stressly wrote:Now my turn for a saying..."fools rush in" (but saying that, I totally realize that if may pain levels were higher, like many others on this board, I may not have had the luxury of biding my time, waiting for new developments to arise, as I have).

Rushing is always a bad decision where elective surgery is concerned. I can't think of one person I've ever met on these forums who has rushed into surgery, myself included.

But regarding new developments, I don't think it's out of line to think about how long a person would be willing to wait for them to come to fruition, especially when we have people talking about suicide or life not being worth living in pain. Sometimes formulating a plan (including a timeline) helps people cope with one day at a time.

Violet M wrote:Charlie, I'm waiting for you to pounce on this one.

Hi Violet

I have only just seen this. Nice of you to think of me.

Firstly let me say I have never said Physical therapy does not work. What I have said is that there is no credible evidence that myofascial PT can resolve pelvic pain. Patients should be aware of that before they spend money on it. I have also never personally known anyone to recover from it.

After looking at the above I still stand by it. Firstly maybe we should look at the source of this report.

Sport Sciences, Canadian Memorial Chiropractic College, Toronto, Canada

It has been done by a Sport's study student at a Chiropractic College. Chiropractic treatment is generally categorized as complementary and alternative medicine (International status, standards, and education of the chiropractic profession". In Haldeman S, Dagenais S, Budgell B et al. (eds0 ). So it has been published by an alternative medicine college. Alternative medicine is a lovely euphmism for unproven. I know we are all aware of what alternative medicine is but I wanted to post this clip as I agree with this very brief summary of it.

http://www.youtube.com/watch?v=IZLKKW2SQoc ( Dawkins can't resist in having his usual dig at religion at the end of this clip so ignore that bit)

Like many studies that suggest the benefit of an alternative treatment we have no control group as the video explains. In fact this is not even a study, it is not even a group of patients being assesed. It is a single case study, an anecdote.

I think it is healthy to be skeptical of all studies , often the stamp of Peer reviewed can be meaningless. What is important is how the study is designed.

Now I appreciate that many Chiropracters would reject the claim that they practice alternative medicine. However chiropracters have made some pretty dubious claims in the past. In fact there is a whole series of articles about Chiropractic treatment on the website Quack Watch a website which exposes medical quackery. Here are some quotes below and I have provided a link to the Quack watch articles.

Chiropractic's educational system has continued to improve but remains significantly inferior to medical training . In addition, many schools still imbue their students with "philosophy" that leads them astray

Studies conducted by chiropractors and published in "peer reviewed" chiropractic journals often recommend treatment for such conditions as infantile colic and asthma. A study published in the Journal of Manipulative and Physiological Therapeutics for example, concluded that "Spinal manipulation is effective in relieving infantile colic" —a conclusion not confirmed with reliable, unbiased research and recently refuted by a well designed study by a Norwegian research team .

If you cannot find a chiropractor who is a neuromusculoskeletal specialist or who works in a back-pain clinic as a member of a back-care team, you have to be on guard as an informed consumer if you are to protect yourself from the nonsense associated with chiropractic treatment. There are many chiropractic procedures and techniques you should avoid—some of which are dangerous as well as a waste of time and money

http://www.quackwatch.com/search/webgli ... iropractic

So I think there is some basis to be skeptical.

I appreciate they used the technique of ART. Another alternative medicine technique. I am always a bit concerned when a technique is patented. (®) . Art is apparently a relatively new massage technique.

If I posted a single case study from the American Medical Association Of Homeopathy explaining how a single person was cured of pudendal nerve entrapment would we take that seriously?

That is not to say the patient in this instance did not get better. Maybe they massaged his OI muscle which relieved pressure on his alcocks canal. It is definitly possible.

However this report is not credible scientific evidence. It is not much different from reading a post on a message board. Call me a cynic but I would argue that what it definitly is is a fantastic advert for Art (®)