Surgery or no surgery?

[Violet M]

1. If you have had PNE surgery, what was it that led your surgeon to believe you had an entrapment and to recommend that you have surgery?
2. When your surgeon recommended surgery, what was the deciding factor that caused you to go ahead with it?

[eraser]

1. All of the following applied in my case: -

Pain in the anatomical territory of the pudendal nerve
Pain predominantly worsened by sitting. Initially pain decreased, if I was supine or avoided sitting.
Pain does not wake the patient at night but getting to sleep was difficult
Pain increased over time
No objective sensory loss on examination
Pain relieved by diagnostic pudendal nerve block
Pain bilateral but worse on the right than the left
Occupational risk factors, sitting on a hard chair for years

All other causes apart from compression had been ruled out.
I had MRI’s but didn’t bother with MR neurography.

2. Failed to respond to conservative measures including pulsed radio frequency. I did not have any quality of life, was unable to work and had enough of being fobbed off by an incompetent pain consultant. The evidence was clear about the most effective option so I went for it but I knew all along that surgery was my best and only chance.

I had normal nerve conduction studies but I knew this was nonsense and that I needed the surgery. I knew from other conditions that nerve conduction studies lack sensitivity to be helpful. For instance even some people with carpel tunnel syndrome can still have normal nerve conduction studies and the median nerve is much easier to test.

[Violet M]

Sounds somewhat similar to my experience.

1. These applied to me:
Temporary partial symptom relief from pudendal nerve blocks
History of pain starting after weightlifting
Pain and symptoms in the distribution area of the pudendal nerve - worse on one side
Pain with sitting
Poor response to conservative treatments - Pelvic floor PT made me worse
Pain when physician pressed on the nerve at the ischial spine
Pain didn't waken me at night so much but it sure kept me from being able to get to sleep
Conduction abnormalities with PNMLT

2. The reason I decided to go ahead with surgery was based on 2 surgeons' recommendations and because my quality of life was so bad I felt like I didn’t have much to lose. I spent most of the time in bed and walking was difficult. Everything was pointing to entrapment.

[eraser]

When you look back now, given that it is basically a diagnosis of exclusion with unique symptoms, do you think it’s that difficult to diagnose?

Our cases seem fairly textbook.

Sounds somewhat similar to my experience.

1. These applied to me:
Temporary partial symptom relief from pudendal nerve blocks
History of pain starting after weightlifting
Pain and symptoms in the distribution area of the pudendal nerve - worse on one side
Pain with sitting
Poor response to conservative treatments - Pelvic floor PT made me worse
Pain when physician pressed on the nerve at the ischial spine
Pain didn't waken me at night so much but it sure kept me from being able to get to sleep
Conduction abnormalities with PNMLT

2. The reason I decided to go ahead with surgery was based on 2 surgeons' recommendations and because my quality of life was so bad I felt like I didn’t have much to lose. I spent most of the time in bed and walking was difficult. Everything was pointing to entrapment.

[Violet M]

When you look back now, given that it is basically a diagnosis of exclusion with unique symptoms, do you think it’s that difficult to diagnose?

I don't know....what do you think? When you look at our cases it seems like it wasn't that difficult to diagnose PNE, but over twenty-some years of reading people's stories on this forum some cases don't seem quite as clear and some people are still struggling even after surgery, although part of that may be related to scar tissue development.

I guess that's why it's helpful to hear other people's experiences, especially if they come back on the forum and give updates on what their symptoms are, what they tried, and how they are doing.

[eraser]

I read some people’s stories and the diagnosis is much more obscure but given this only started two years ago for me, it’s a bit worrying that they still cannot get a textbook diagnosis right let alone a much more difficult one.

[April]

I had pn surgery. Here were the factors that the surgeon said made me a good candidate:

--pain in the area of the pudendal nerve, including sharp pain when pressing on nerve at the ischial spine on the left side
--pain started after I started a new intensive workout routine on a step machine (I did it for about five months, although the pain gradually started less than two months in). This was important because it was triggering event.
--although my burning was diffuse and bilateral, I had much more stabbing and sharper pain on one side. He said this was important, because it is a bit unusual to get entrapped on both sides. (But, of course, I was stepping on both sides, so I can certainly imagine people getting entrapped on both sides. I think that is what happened to Violet.)
--My pain increased as the day went on.
--Conservative options didn't work.
--I had a decrease in pain with a nerve block.
--It had been going on for 3.5 years and I was getting worse.
--I had an MRI that showed edema where the ST and SS ligaments intersect on the left side only. The radiologist thought that was indicative of left-sided pne.

Note, however, that unlike most people with pn, my pain did not increase with sitting. (Even now when I have flares, it also does not increase when I sit.)

The decision to do it was fairly easy for me at that point. I was very happy to hear that I was a strong candidate, and I didn't have much to lose at that point, because my pain was totally interfering with my life. I was on several medications, using ice around the clock, and had developed significant panniculitis from years of icing.

April