Wise Anderson protocol

[acw]

MRIs must be swell for something -- but not inguinal hernias.

Actually, I had my inguinal hernia detected (although not actually diagnosed) by an MRI. It was originally identified as a "fluid-filled cyst", and I was referred to a general surgeon for a fine-needle aspiration. Luckily, I got a general surgeon who wasn't so quick to accept that report. Long story short, I chose to have exploratory surgery in that area. The doctor found that the "cyst" was actually fatty tissue that was protruding through a hole in the abdominal wall (the hernia), and didn't discover the hernia until part way through the surgery when he traced this tissue back.

I also had complications a few months after surgery. Terrible burning, sometimes shocklike pain. My surgeon was finally at a loss to find a reason. He referred me to a neurologist (who referred me to Dr Antolak), and then to a pain clinic. Dr Antolak immediately diagnosed me with pudendal neuralgia, gave me the hyperprotection protocol to follow (which I did not), and recommended his injections (which I refused). I tried Neurontin, and later Lyrica, prescribed by the neurologist, which did some good but I hated the side effects. Ultimately, it was the second doctor at the pain clinic (first one was useless) that focused in on the inguinal nerve. A few nerve blocks, and eventually cryoablation of the nerve, resolved that pain.

I have experienced some pain on the other side now. I went for a consultation with my general surgeon again just before he retired (I'm really sad that he's not practicing anymore...wonderful, caring physician who really took time with and interest in his patients). He mentioned a possibility of a hernia on that side, even though there is no visible or palpable lump. It doesn't bother me enough right now to have the exploratory surgery done at this time. But I would definitely consider that before accepting Dr Antolak's "certain" diagnosis of PN.

I'm not saying that PNE doesn't exist. And I don't think that everybody's undiagnosed pelvic/groin pain is a hernia. But I do really believe that you have to stop yourself and your doctors from getting tunnel-vision when it comes to diagnosis and treatment.

[Lernica]

One of the reasons I find this thread so interesting is that while I no longer experience the horrible internal burning PN pain after my treatment in Cornwall, I still have significant aching and throbbing pain on the left side which Dr. Andrews thought might be a trigger point on the pelvic floor. But now I'm wondering about an occult hernia. My remaining symptoms are: (a) significant pain in the left lower abdomen and groin; (b) pain in the left side of the anus (and to a lesser extent, the genitals); (c) pain in the left inner buttock (near the anus); and (d) pain in the left butt when sitting more than thirty minutes. The pain is exacerbated by exercise, to the point where I am having difficulty walking. The pain subsides after resting (i.e. lying down). Also, like Gigas, I have always had extremely painful sigmoidoscopies and colonoscopies, despite heavy sedation.

Gigas, does it sound to you like I might have an occult hernia? If most of your GI surgeons couldn't detect yours, how do you suggest I find one who can detect mine?

[acw]

Not following you -- a hernia was discovered during surgery... and after the problems started? Was the hernia repaired?

I had some pain before the hernia surgery. Not the burning, nerve pain, but the discomfort was what drove me to find out what was wrong initially. So my original pain resolved, but the new pain started (in the same general area, but now the burning, shock-like pain) a few months after hernia repair. It was ultimately found that a lot of scar tissue grew around the inguinal nerve. No fault of the surgeon, just unfortunate healing on my part. The hernia repair is holding strong over 6 years later.

acw wrote:
"I have experienced some pain on the other side now"

You probalby already know what I think.

I'm pretty sure I could take a good guess. Like I said, it's not bothersome to the point of wanting to go under the knife just yet. There may be other causes, too. It's also possible that it could be the result of diverticula (showed up on an abdominal CT scan). Or something more muskuloskeletal related (and aggravated by lots of sports, exercise, and activity). Maybe one day I'll figure it out. For now, I'm just enjoying a break from doctors and clinics.

[Laura]

Hi Gigas,
Thanks for posting! I actually had an iniguial/femoral hernia back in the early 80's. I diagnosed myself before I went to see a doctor. It was easy as I had the classic bulge that was there when I was standing and I would have to lie on my back and push it back in. It was located on my left side. I don't remember the pain, as it was many moons ago. I don't think I had problems sitting. Saying I had no pain upon sitting ; I am not dismissing anything you've said I'm just relaying my history. I had the hernia repair surgery done. The hernia came back in the same place almost a year later. This time the surgeon used mesh for support as he said I had weak tissue.
For almost a year now I've had "classic pn symptoms" on my left side and have stopped all sitting but I still have not gotten any better. You have me thinking.

[Violet M]

It's not always easy to determine what's going on inside of a pelvis and it makes sense that all options should be explored including pudendal neuralgia when someone has pelvic pain.

[kathyd]

Hi Giga
Thx for posting this info. You;ve got me thinking about hernias..
I will post more in am when Im awake! ... but years of pursuing 1st IC/ painful bladder treatments, later labled PN/PNE
.. With time sit bone and peri pain with sitting, later with standing.. and most recently
the worst pains of all-- horrendous anal/rectal pain... ( this came on about 3mos after peripheral nerve surgery)
I have always wondered if I hadn't kept chasing for answers and doing all these treatments as rx'd would I have been as bad off as I am now? Bedridden practically ... but Im still young and still determined to beat this for my family.
Hernia was an issue my hubby and I considered but no doc ever suggested... for various reasons we wondered if this could be the thing that was missed. We had heard of other mystery chronic pain stories in females that turned out to be hidden hernias.
I don't fit the Classic PN/PNE picture, but who does.. and treatment for it hasn't worked thus far. (just made me worse!)
I will add more later, but one thing that caught my attention is you feel ok in am, but pain starts when sitting walking.. thats me being upright does it...as soon as I get up.. and each day it gets worse.. I will write again.
Thx for posting! Great food for thought!
Best wishes

[calluna]

I too am thinking about hernias.

I did very definitely have damage to the pudendal nerve during mesh surgery for prolapse 2009 - awoke completely numb in the left pudendal distribution, feeling returned over next 2-3 weeks as pain. I am much better since the surgery 5 months ago which removed much of the mesh, but I do still have pain with sitting, and also with walking or standing. The pain is both sides - and is not in the groin, but in the pudendal distribution.

Whilst I was waiting for the mesh surgery, I was diagnosed with inguinal hernias on both sides, by the elderly semi-retired senior partner at my GP surgery. He pressed along the line of the groin and there was a point on each side that was very tender which he said was exactly where he'd expect it. I had sharp pain in the groin when coughing, sometimes it was one side and sometimes the other. Sometimes both sides together. I wasn't surprised by the diagnosis, my sister has had a lot of problems with hernias.

I had an xray at hospital, all clear, so the hernia idea was dismissed, even though I still had the pain. I was in a lot of discomfort because of the prolapse and the effects it was having, so things weren't exactly clear cut at this point. The thing is, I still have the groin pain when coughing, the same as before, also sometimes sharp pain if I move 'wrong' and something catches.

Right now, it is not bothering me enough to go looking for help - and besides, things are still healing from the surgery 5 months ago, I am sure. But I had no idea that hernias could cause pain with sitting, or indeed pain anywhere other than the line of the groin, and now I'm wondering if some of my ongoing pain could be due to the hernias which I'm sure I do still have.

I think I'll wait and see how things progress.

[donstore]

NS,
Was your sitting pain burning or aching at your ischial tuberosities ? Is it possible that pain specifically in that area could be referred pain from an inguinal hernia ? The traditional PN explanation for why pain gets worse during the day is that sitting tightens the space between the SS and ST ligaments and presses on a nerve that is crowded already. Internal pressing on the top of Alcocks at the ST ligament was painful in that area only and no where else. This was exactly where Dr. Potter saw scar tissue on my MRI and no where else. She didn't know about this specific part of my clinical history prior to my MRI. Coincidental or diagnostic ? Just saying.

Don

[calluna]

I've been thinking, and doing some googling too.

I cannot find any reference at all to inguinal hernias, occult or otherwise, causing pain in the pudendal distribution. Increased pain on sitting, yes - but it is always groin pain or pelvic pain that is mentioned, not pain in the area where it usually hurts with PN, the area innervated by the pudendal nerve.

So - I think - maybe it comes back to the aphorism - hear hoofbeats, expect horses not zebras. The most likely cause (not the only possible cause, but the most likely one) of neuropathic pain in the pudendal distribution is going to be problems with the pudendal nerve, not referred pain from something else.

And on that basis it seems sensible that my intermittent groin pain is because of the hernias there, and that my intermittent pain in the pudendal distribution is most likely due to some remaining issues with the pudendal nerve - ongoing healing, something to do with the remaining mesh, formation of scar tissue perhaps. Not expecting any zebras here....

[Lernica]

Calluna,

I did some googling too and did find a few references to hernias referring pain into the genitals and anus. I also experience groin pain, and exquisite pain in the lower abdomen. (Dr. Gordon always wondered about that. He would say, "Hmmmmm --- that pain is not along the distribution of the pudendal nerve. . . ". But he never thought about a hernia. Wonder why?)

So on that basis I will be pursuing the hernia possibility. Fortunately in Toronto there is a world-renown hernia medical centre, the Shouldice Hospital. They accept walk-ins. So I will go there and let you all know what happens.