Health Organization for Pudendal Education

Cora

I hope you don't mind but I was reading your blog. You have posted it on your profile. It's a well written blog and I can relate to what you have been through.

When I read the your story section I noticed this sentence. I have quoted it below. Again I hope you do not mind and if you would like me to remove references to your blog then just let me know and I will do it straight away. I am also not trying to use your own words against you, I am just presenting a different view.

I was evaluated by a surgeon and upon exam he discovered that my pudendal nerve was very sore and sensitive. He thought that perhaps I had injured it from cycling and likely it would calm dow

I realize you are an RN and also from reading your blog understand your husband is a doctor so I am sure you have done your research. However I am just going to offer an alternative approach to your treatment. Could it be the case that you did injure your pudendal nerve?

You also mention other stuff that suggests a nerve problems such as

While cycling, I had a few episodes of numbness in my right leg, pain near my sit bones and an odd buzzing sensation

Once in a while, my foot would go numb

It has been over a year since I have gone to PT on a regular basis. In the past few months, my symptoms have worsened

Could it be the case that with PT you are treating a secondary change in your body but not the primary cause of pain? The PT helps as it relieves the pressure on the nerves and therefore you experience some relief. However without regular PT the muscles begin to resume their previous tension.

You have seen three PT's now and are about to try it again.

Maybe there are some people who have made a full recovery with PT. However I think you should also ask yourself the question of 'if other people have been as you say 'cured' with PT why are you not cured?'. It seems from reading your blog you are doing everything right , meditating , tai chi , trying to remain calm , taking strong medication -morphine,you gave away your bike, you use a cushion to sit down yet you are still not cured. What is different about their case and yours? I accept centralized pain could be one explanation. However why then did their pain not centralize and yours did? Could there be another explanation apart from centralized pain for instance a nerve entrapment or nerve problem?

From reading your blog you seem to have been through a lot with this illness as most of us have done and you deserve to get better.

Hi Charlie, No I am happy that you visited my blog. I hope you liked it. Writing is a passion of mine. I plan to have guest bloggers on Fridays, if anyone is up for that. Well, first of all, I gotta finally figure out how to use the quote thingie. You do that well. Actually, the pNMLT testing has been suggested by Liz. The onset of my pain was also associated with centralized pain- all together it was one big storm. I kind of look at things from a doctors point of view which is: Do a test if it is likely to change what you do- i.e surgery for example. But I can see that the test in and of itself could predict perhaps the value of pt. I suppose, but it is as you said before, a pain management tool for me. Up until this point and still with all the things I can do- I don't know that I'd do surgery or if a doctor would even consider me a candidate for surgery. Interesting though, both my PT's have not ruled out recommending the testing, and looking at things from a quality of life perspective, I'm concerned that going thru surgery might make my life worse, than better, so that has been my greatest hesitation, But, if right now, this decline represents a new change ( I have fibro now and that is what is making my life more tricky that the PN) then I might consider more intensive evaluation. I have pain free times, albeit with meds, so it's all dicey. I can't see your footer right now, can you tell me what you have done and how you made those choices and what your quality of life is like? If it is more appropriate to discuss in a PM, that's ok with me. I don't want this to be repetition for others if it is
Thanks
Cora ( I almost wrote Ocra

Charlie, p.s. I actually appreciate your time and thoughtfulness.
Cora

i've spent all the past 2 hours reading case updates, and how people made decisions for surgery. And more on imaging. I can see how challenging this is. Right now i feel I am still too high functioning to consider surgery, but i think this is the year that will tell me more.
Cora

Cora wrote:Charlie, p.s. I actually appreciate your time and thoughtfulness.
Cora

Your welcome Cora. You articulate well what pelvic pain patients go through. In a way it was quite sad to read as you were such an active person before you got this. I was the same and did a huge amount of sport when I was younger. That has had to stop now sadly even though I did do it again briefly after being told to do so by a PT in an attempt to recover. It was just too painful to keep that up though.

In terms of the treatment I have tried well I did the usual round of urologists and anti biotics like most men do. I then went to the A Headache in the Pelvis clinic. I have spoken about that a lot on the forums. That set me off on an attempt to recover through PT and relaxation mainly using a meditation technique called Paradoxical relaxation.

I tried PT for a very long time and went to some top PT's. Did this treatment give me relief? Yes it did but it was always temporary and never complete relief. I would say it modulated my pain.

I have now had both an MRN and a diagnostic nerve block which suggested an entrapment. ( I should add that since I wrote this post I have since found out that the MRN is disregarded by most medics and is not an accurate tool for diagnosing nerve problems )

I guess I am annoyed that the PTs I went to see told me that I did not have a nerve entrapment. As I have since found out there is no way they can make that diagnosis from a manual exam.

I can also honestly say that during my attempts with PT I met other patients and I can not report a single person who has been cured by it. Whereas I do know personally people that have become pain free from surgery for pelvic pain.

I have mentioned that there is little if any evidence to support PT for pelvic pain. However to be fair you also have to say that the evidence for surgery is also extremely poor.

I think a control group for PT studies is vital as there will always be a placebo response from it. You go and see a person once a week, who listens to you about your pain, who tells you will recover and then in effect massages you for an hour ( I realize parts of this are very painful). There is something comforting and reassuring about going to PT. You are doing something about your pain every week and receiving reassurance. I know others will say there is a placebo response from surgery as it's a big medical procedure to have however you don't go back to your surgeon every week for treatment and a chat. The placebo response is sustained with PT. I think believing you are going to recover with the treatment also has an affect on how people rate their pain on a scale of 1 to 10. For example if you have the same levels of pain but on one day you believe you are going to recover you will rate your pain lower but if you see no way out of your pain you will probably rate your pain as a ten, yet the actual pain level could be exactly the same.

I want to stress also that I am not crticising anyone that tried or is trying PT as I tried it for years.

I think the science for trigger point treatment can be weak, there is no objective criteria for a trigger point. It is also far from mainstream medicine. We are told trigger points can cure a huge array of problems not just pelvic pain. Yet Drs are not taught it in medical school. That seems strange to me. The argument against this is that trigger points are part of physical therapy ( in actual fact you will find few physical therapy degrees that will teach their students about trigger points) so therefore Drs won't learn about them. If trigger point treatment was so successful Drs would have the power to treat a huge range of conditions yet they don't learn about it. It makes no sense.

Another counter argument is that trigger points are new so not known about and not mainstrem. Really? Travel and Simons came up with them in the 1970's. Yet even now it is far from mainstream medicine. In 1940 the Australian Howard Florey and German refugee Ernst Chain began working with penicillin. Using new chemical techniques, they were able to produce a brown powder that kept its antibacterial power for longer than a few days. They experimented with the powder and found it to be safe. By the time of the second world war it was being used on thousands of soldiers. Bear in mind also that there was not the same communication technology then for example no internet. Again I don't buy this argument that it takes mainstream medicine so long to catch up.

I do see PNE surgery expanding all the time and more and more Drs becoming interested in it. We have just seen another surgeon begin performing the procedure in Oklahoma. As has been noted on Tipna two doctors (not connected with each other) are now performing the procedure in the UK . Filler in a recent paper calls for pudendal nerve surgery to be a standard part of a neurosurgeons training.

I am not saying trigger points do not exist. There are clearly tight bands and areas in muscles which are painful which need to be addressed. However I don't think they always occur in isolation. I think sometimes they can be a secondary change in the body. I like the article that I posted at the start of this thread.

There are also a lot of people who are strongly against trigger point treatment. The guy who wrote this article posted below seems to be strongly anti trigger point therapy. This is a polemic against trigger points but it gives people an idea that this is regarded by some as a controversial approach. There are clearly counter arguments to his viewpoint .

http://itandb.com/pdf/truthaches.pdf

If you are in a hurry and want to save yourself the trouble of
reading the rest of this article on trigger point therapy, you can
save yourself some time if you just read and agree with the
following:

Pain does not cure pain.
Trigger point theory is wrong.
Stop hurting your patients.
Stop hurting your hands.
Stop losing patients because of poor results and unnecessary
pain.
Make more money by helping your patients and not hurting
and losing them.

My experience with manual pelvic floor PT was distrastrous! What I can say about my trigger points that have been treated with injections of either botox or lidocaine/steriod are the only ones that have gotten under control and with regular injections they don't bother me and the little muscle knots are gone. I can not answer whether at some point these trigger points will go away permanently over a several year period after injections or whether they will be life long treatments because the root cause is not/can not be cured.

Charlie, I do not agree with you regarding medical students not being taught about trigger points. I have three pain specialists I see on a regular basis, one treats me for my pelvic pain, one treats me for the RSD in my legs and one for my TMJ, two work out of medical schools, I might add in totally different cities that are 2 hours apart, and there are always residents or students there when I get injections. This does not include my surgery with Dr. Hibner where part of the procedure included botox injections into the pelvic floor and there was an entourage of students and residents with him. If you are referring to trigger points being taught in the classroom proper, I can not speak to that, but students are certainly learning about them in the clinical setting.

For me manual PT would release my trigger points but a day later they would be back. I also tried trigger point injections and that had a more profound effect. It lasted about 2 weeks but the same trigger points came back.
I even for a short while had PT every day to see if that could initiate a breakthrough. No. They always came back.
I also combined that with paradoxical relaxation and that had no effect either.I am not bitter and I really like the PTs I saw. After I stopped having PT, I continued to do on myself those skin rolling techniques. I was certainly not as good as the PTs and the angle working on yourself is pretty awkward but it clearly helped me temporarily.

Dr.Filler said that I had the most fibrosis around the pudendal nerve he had ever seen. So if you believe his report you can imagine that whatever you do manually to the muscles around the nerve, they will always go back to a state of contraction.

I am really grateful to have this forum and want to thank-you guys for sharing your insights in such detail. Gotta lot to think about. "First do no harm" keeps reverberating in my mind, so I have to spend some time thinking about all this. Likely more talks with my neurologist who is new to my "team." My husband and I have been having some very academic conversations the past few days. It's interesting cuz he sees my PT as well ( she agreed to work on his shoulder - she is actually an OT) and again, she maintains him so things don't get worse. To be continued.. right? And thanks for taking the time charlie,ezer, nyt for reposting some of this, as I know it has been hashed out on the old forum.
Cora

nyt wrote:

Charlie, I do not agree with you regarding medical students not being taught about trigger points. I have three pain specialists I see on a regular basis, one treats me for my pelvic pain, one treats me for the RSD in my legs and one for my TMJ, two work out of medical schools, I might add in totally different cities that are 2 hours apart, and there are always residents or students there when I get injections. This does not include my surgery with Dr. Hibner where part of the procedure included botox injections into the pelvic floor and there was an entourage of students and residents with him. If you are referring to trigger points being taught in the classroom proper, I can not speak to that, but students are certainly learning about them in the clinical setting.

Thanks for replying to my post NYT and I accept the point your making. There are clearly Drs that treat trigger points. I have had a Dr perform trigger point injections on me also.

However I would also make it clear that trigger points are not part of a Dr's standard medical training. I have heard that in the UK trigger points are not even part of a physical therapy degree. When trigger points are sold as the cure all to so many health problems this seems odd. We often hear people attacking PNE surgery for not being mainstream yet you can make exactly the same charge against trigger point treatment for pelvic pain.

I also don't agree that botox should be classed as trigger point treatment. Botox has an effect on the nerve which prevents the muscle from contracting, in effect it paralyses the muscle. I've met Drs who believe in botox treatment but do not believe in trigger point treatment.

The worrying thing about trigger points is that there is no agreed upon diagnostic criteria. Diagnosis is subjective.

Cora,
Good luck. It would be great if you could share your husband's thoughts on the subject with us.
Also you mentioned possible central nervous sensitization. This is something Dr.Weiss didn't believe in. He told me several times that if you can stop the pain generator, eventually the pain perception goes away. My experience is that some PTs bring up that hypothesis when they run out of ideas...