PN or PNE? by stephanie prendegast

[Alan1646]

We are all hacked off by previous misdiagnoses along the way, but kidney stones would be a rare one. Simple blood test/xray would rule those out straight away.

Why do you believe that?

My understanding is they are quite common, and famously cause pain. I wonder -- how many people here went ahead with PNE surgery without getting kidney stones ruled out. Comments, anyone?

I never heard of a blood test or Xray for kidney stones. CT Scan with contrast is supposed work (a fancy xray) but it may not catch small painful stones which pass through quickly and cause bad pain on the way. As wacky (and ugghy! and improvised) as peeing into a coffee filter may sound, it's one way doctors routinely (and for many years) catch kidney stones when other methods fail. There is more than one type and size of kidney stone, and the related causes/frequency of pain/best way to diagnose varies based on the type.

But Predgabas knows none of that -- based on her article. Or other things that cause pelvic pain. How dare she hold herself as a diagnostic authority!

And the key point is this: she writes an article about distinguishing between PN and PNE, but she says the only real proof is surgery. And yet the PNE surgeons have results that are far from reliable (at least in some cases TERRIBLE). So to take what Predenga says on face value no one knows but the surgeons, and based on the track record of surgeons I am not confident they know either.

Many on here have been helped more by PT's than doctors

I'm sure that's sincerely true! And the one sure thing is any relief from pain is welcome.

But I gave pelvic massage a big chance, and I think it feels good because massage feels good. And I understand why people like PT -- it's a kind of kindness and close personal attention no doctor gives.

You don't like Stephanie Prendergast's opinion because she's not a doctor?

That's not what I wrote.

Her statements appear to have absolutely nothing behind them -- no anatomy, no real science, nothing but her opinion. The whole idea of "retraining muscles" is unscientific and illogical and farfetched -- based on totally uncritical subjective judgments.

Just about all of us here seem to doubt doctor promises. As a non-doctor with no sign of any understanding of science or scientific medicine, Prengrass has no basis to say what she says with such authority. She can't say what causes pelvic pain because she has no idea it's caused by multiple things -- or how those things are tested. In the end she admits SHE doesn't know the difference between PN and PNE -- only the surgeons know. Except based on their results maybe they don't.

Seriously am I the only one frustrated here?

Thank you for your very interesting and thought provoking posts Leila Rose.
It is all a puzzle and it does seem that no-one has a definitive answer. Surgery seems to me to be very risky and without a good success rate.As you say, some people have had several surgeries with no improvement and some even have had significant worsening after surgery.
I've noticed that a hot bath always results in an almost immediate improvement/ temporary ending of my pain, and I can sit in the hot bath for a few moments without pain-does this mean I don't have entrapment? Somehow the hot water causes something to relax or release. If only I could cause this to happen all day.I've tried various muscle relaxants-valium helps, but what does that mean?
I found the physiotherapists I saw did no longer term follow up and I've yet to find one that keeps records of PN patients and results-or even case studies.
Edit: Also, I'm very interested in the idea of kidney stones being a possible cause of pelvic pain. I had kidney stones in the past but I wonder whether they can cause long term pain lasting for years.

[birdlife]

Sounds like NorthernSpy to me, Violet, what do you say LeilaRose?

Alan, surgery seems to be pretty risky to me too, which is why I'm not going down that route unless my quality of life is such that I'd have to. A hot bath gives me some temporary sit-pain relief (not for long though because you're sitting on a hard surface!) so I think that tight pelvic muscles put pressure on an already irritated pudendal nerve and the heat of the water eases the muscular tightness briefly. You might benefit from massage of the same area at the same time ~ some PN'ers have found that helps, though I haven't. As I understand it, the formation of kidney stones can be a recurrent problem so yes you could suffer on and off for years, but obviously with periods of respite inbetween.

[helenlegs 11]

I don't agree 100% with all that SP has to say in that article but I'm still very glad that she has made a stab at at least trying to clarify the PN/PNE problem. I also think that we need to give the girl a chance.
Maybe this is why there are so few pelvic nerve doctors around, the whole thing is so complex, multi (infinitely?) faceted and full of huge pitfalls diagnostically. I know nothing about kidney stones (apart from what I have just learned here, thanks BF and that they hurt) but if they can be mistaken for PN, that is an easy thing to add to the growing list of differential diagnosis. It's very important to have this info so that people can rule that pathology out (or in)
We have added such a lot of related and connected problems and will probably continue to do so,as more and more anecdotal evidence transpires; labral hip tears, inguinal hernias, SIJD, tarlov cysts etc, which all of the massage in the world won't ever fix.
Got to say that any massage of my problem area (piriformis muscle) NEVER makes me feel good , quite the opposite and I have also spent a fortune on this pain inducing 'therapy'. BUT what else is there for us to try????
The medical community may very well be bewildered and perplexed at the pelvic complexity but all I can say is a huge THANKS! for at least taking on the challenge.
That goes for pelvic physiotherapists too. Lets not forget tho', what a challenge this problem is. Maybe we have had the 'god like' doctor image that you talk about LeilaRose for too long, I know I have. We automatically think they do or will know . Our problems are exacerbated when THEY think they do but don't!
However, I can't decry those who are at least trying to help, that is as bad as being back in the very dark days when pelvic nerve entrapment or irritation didn't exist, or being told yes you may have this 'rare' problem but there is absolutely nothing that can be done. . . . I can't accept that and I'm so thankful that some clinicians can't either.
The problems are;
Blinkered clinicians giving misdiagnoses as they can not think outside of their particular specialty. I think most people encounter this and not just once. This is why we need to inform ourselves, become our own advocates and have informative forums like this to help each other out.
Blinkered clinicians thinking the condition doesn't exist.
No specific medical speciality for pelvic nerve pain and no/very little medical training for same.
Imaging; it is still in it's infancy and will not always give a clear indication if a problem exists.
A problem may need to be quite substantial to show on nerve conduction tests, yet a patient may experience severe, chronic pain with much less nerve irritation.
A good knowledgeable clinical examination for PN?PNE usually involves a gynecological exam, which many clinicians are not comfortable with. However such an examination does exist; and i know that I respond
The problem is not new but the treatments are. Hopefully as with all developing therapies, outcomes will improve.
The longer a nerve is actually entrapped the less likely a good outcome (under 6 years has better figures, from Guide to Chronic Pelvic Pain 2012, on home page) So as there are all of these people who have been misdiagnosed, ignored, misdiagnosed again, endured countless ineffective therapies, spent a fortune, become disillusioned etc, etc. . . . . . sorry tangetted!. . . . these people, sorry US, have been round the houses and invariably get way beyond the under 6 year , best case scenario, if entrapped, before any surgery, so it's no wonder the figures for surgery are not that good.
If it takes this long to get a correct diagnosis for PN/PNE, and initially; unless someone has woken from pelvic surgery with pelvic nerve pain, no one could positively say it's definitely PNE, it will still take a good bit of detective work with or without the aid? of imaging or nerve conduction tests to diagnose between PN or possible/probable PNE.
Part of the detective, diagnostic process is pelvic physiotherapy (although it should be more extensive than pelvic floor physio, this is where SP gets stuck in her own specialty )
My equation would be
History + Pelvic NERVE pain, post op,trauma + positive clinical exam (if required) + tried every damned pelvic therapy available with no lasting results - central sensitisation - differential diagnosis including kidney stones = entrapment.
Things will improve. . . .it has been discovered that the figures for pelvic pain is equal to that of back pain sufferers or that for people with asthma, which is a huge drain on any economy. . . .so now it is a governments own interest to address it. Hoo(damn)ray!!
This only gets you to the point that yes there is a problem with pelvic nerves. More detection is often necessary to discover which nerve (ok mainly but not always exclusively pudendal) and then the biggy. . . .WHERE!
WE are just not easy people to deal with medically!
With regard to those who are entrapped, actually managing to get surgery isn't easy either. I know this is not part of this discussion but I'm on one now
Before the invention of X ray and MRI, it was commonly thought that the pelvis was solely anatomically responsible for lower torso nerve pain but when these imaging techniques could show actual spinal nerve compression with disc hearniations etc, any pelvic connection was forgotten (shame) In the early days of spinal decompression surgery, the results were not very encouraging but as a person who has had a successful microdiscectomy (S1/L5) I know they can do a fantastic job of spinal decompression now.
It's the same with carpel/tarsal tunnel syndromes. . . . .they exist. . . . they get surgically treated!!!??? I have no figures but possibly because these problems are more recognised, are easier and quicker to detect, any following surgical procedures do work well.
I was recently told that pelvic nerve decompression wouldn't do much good because of a build up of scar tissue post op. MY problem IS scar tissue. I would just like the option to be able to get whats in there, 'unpicked' , to let the @#%*@!! nerves out of the @#%*@!! scar tissue so that I can get on with developing any additional scar tissue my body thinks fit. Tangented again, but thanks for this whole discussion LeilaRose Sorry that you haven't found the solution your particular problem. . . . .yet?
Take care,
Helen

[Violet M]

Thanks for bringing up the subject of kidney stones, LeilaRose. I thought I knew you from somewhere. Should I remember your name from over on pudendal.info?

There are a number of diagnostic tests for kidney stones. Here's a good list:

http://www.webmd.com/kidney-stones/kidn ... -and-tests

"Tests to diagnose kidney stones

Your doctor may do one or more of the following tests to help diagnose kidney stones, see where they are located, and find out if they are causing or may cause damage to the urinary tract camera.

A noncontrast spiral computed tomography (CT) scan is the preferred test for kidney stones. It is a special type of CT scan that moves in a circle.
An intravenous pyelogram (IVP) is an X-ray test that can show the size, shape, and position of the urinary tract, including the kidneys and ureters. See an IVP of a kidney stone camera.
A retrograde pyelogram may be done if the IVP or CT scan does not provide a diagnosis.
Urinalysis and urine cultures test your urine.
An abdominal X-ray (KUB) gives a picture of the kidneys, the bladder, and the tubes that connect the kidneys to the bladder (ureters).
An ultrasound exam of the kidneys (ultrasonogram) is the preferred test for pregnant women."

Web MD lists prostatitis as one of the diseases with similar symptoms as kidney stones. Where have we heard of prostatitis before?

I've never heard of anyone mistakenly diagnosed with PNE when they actually had kidney stones but I guess it would be possible since some of the symptoms can be the same. It would probably be a sudden onset of severe pain for no apparent reason -- no history of injury or recent pelvic surgery, etc.

I certainly wouldn't fault Stephanie Prendergast for not bringing up the subject of kidney stones. No one can be an expert on every facet of pelvic pain. Her area of expertise is the musculoskeletal system as opposed to visceral pain. She is very good at what she does.

Violet

[Jane]

Helen,
Many thanks for your post and the link to the Nerve Centre. I did however have the procedures done at the Hospital for Neurology and have a phone number for the Pain Management Team who may be able to access my notes and give me some information.
Take care

Jane