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.
Tried numerous medications as well as a long period of myofascial physical therapy combined with meditation/relaxation. My pelvic floor muscles are now normal and relaxed on exam ( confirmed by many Pelvic floor PTs) yet my pain remains the same. Also have intense leg pain. Deciding on next treatment.