Health Organization for Pudendal Education

Here are some questions I have. If you don't want to tell about your case, you
can write if you wish: "I've heard or read that....." or "There are anecdotal
reports that.....".

1) When pelvic, neurological physical pain (which is later diagnosed as PN pain)
just suddenly started one day, was that *initial* pain continuous for a few
minutes, or continuous for a few hours, or constant all day long, or continuous
for several days, or continuous for many consecutive days, until it subsided? [I
ask this because I understand the PN pain problem just suddenly starts for
many.]

2) I know this PN nightmare causes exasperation and desperation. How long after
the sudden start of the PN problem did some choose to have surgery? Is it
generally too late for surgery say 3 yrs. after the sudden start? Has surgery 5
yrs. from the sudden start still benefitted some PN patients? Does the option
for or the recommendation for surgery all hinge on what caused the PN in the
first place, i. e. from an accident, birth of a baby, exercising, etc.?

3) Is the site where the pudendal nerve is thought in some to be entrapped
between those 2 large pelvic ligaments close to the anus or rather
far from it in the pelvis? [I realize that the pelvis isn't as big as a football
field, but I still wonder how physically close the usual entrapment site is to
the anus. You see, I wonder if nerves that are damaged by the anus cause the
physical pain there by the anus or can entrapment in the pelvis far from the
anus cause the physical pain to be felt at or around the rectum and anus.]

4) Since the physical pain moves around over time, does it finally generally
settle into one area of the pelvis?

5) How much gabapentin do some PN patients take? I wonder what a daily upper
limit is for this drug.

I look forward to any info you can give me.

These are my personal answers/opinions with relation to your questions:

1. I believe when my pain first began there was always something there but the intensity and location would change.
2. I had PN surgery two years after my pain began and about 8 months after I first was diagnosed with PN. I think it is important not to rush surgery.
3. The entrapment is not necessarily near where you have pain. Check out the diagrams on this site of the path of the nerve for more info on this.
4/5. I do not know the answers to these questions.

Stephanies

stephanies wrote:These are my personal answers/opinions with relation to your questions:

1. ........

Stephanies

Thanks Stephanies for your responses to my questions.

1) my pain from the chair incident lasted for months possibly months past surgery before subsiding.

2) had pelvic muscle spasms pains that may have been precursory to PNE in 2007 & 2008. Each time I had treaments and recovered in a month or so. Then end of June 2010 i sat on a hard chair in pain and did not get up right away. It seemed the pains were back but I did various treatments that may have helped a little but no resolution. Then PT worked on me Oct 2010 to Jan 2011 and said my two ligaments were really tight and I should go see DR Marvel to have him do formal diagnosis. Not sure the surgery reccommendation is fully linked to the cause. My case was probably brought on by combination chronic constipation and excessive sitting(bunion foot pains moved my towards sitting alot. The candidacy for surgery was based at least partially on nerve blocks giving me relief from pain, my history my evaluation, and quality of life (having used sitting to compensate for limited standing and walking -what do I do if I also am severely limited for sitting?). From others I think the surgery may be best within 5 years of onset but as it only shows as definite PNE when you are in for surgery it seems best to try other treatment to try and avoid surgery that may not be applicable to your case. Tough decisions. For me I also felt I was rapidly getti g worse and wouldose my job and end up 24/7 at pain level 10. Did not see this site until later and was unaware of limited knowledge of doctors and luckily fell into those who could help and I did not think to doubt the and forged ahead.so far even though things are still challenging and trying to find more workaround for chores and everyday things I am glad to have had the surgery kept my job and have less than 2 years to retirement with Family Medical Leave Act Leave WithOut Pay I believe I will get my good pension.

3) I pne entrappment between the two ligaments and my pain is left side anus pain.
4) not sure how to answer mine is predominantly felt in anus rectally across the time however with SIJD pelvic instability the pain moves around.
5) I went up to 1500mg but stopped per suggestion of my physiatrist at that level instead of continuing to 1800mg. I have seen others say there are minimums to get some relief and the high end are 3600 or more?

1. Symptoms came and went and were mild for awhile, changed in nature, but then eventually became pretty much constant, although worse toward the end of the day.

2. It was 10 months from the onset of severe symptoms before I had surgery but I'd had mild symptoms for about a year before the severe onset of symptoms. I've known people who got better from surgery 15 and 30 years after the onset of PN symptoms but my understanding is that good outcomes are more likely if it hasn't been a long time. I don't think that rushing into surgery is a good idea though. You need to have an overwhelming diagnosis of PNE before opting for surgery and it's generally considered a last resort treatment.

3. The anal sphincter is innervated by the inferior rectal branch of the pudendal nerve. Damage to or compression of the pudendal nerve can cause pain distal to where the nerve damage is. (Distal meaning farther away from the spine.) So, yes -- if you have a compression of the pudendal nerve between the sacrotuberous and sacrospinous ligaments it can cause pain in the area of the anus. Keep in mind that there are variations in anatomy of the inferior rectal nerve -- it branches off the main trunk in different places in different people. If you have a nerve entrapment, whether or not you have anal symptoms may depend on where the PN branches off.

4. For me, eventually the pain took over the whole pelvis -- like the whole thing was on fire. So I guess I wouldn't say it settled in one area but rather it spread to more areas as more and more muscles went into spasm.

5. Like Janet, I've seen people post as much as 3600 mg. a day.

Violet

Thanks janetm2 and Violet for the helpful information.

hank3.14 wrote:Here are some questions I have. If you don't want to tell about your case, you
can write if you wish: "I've heard or read that....." or "There are anecdotal
reports that.....".

1) When pelvic, neurological physical pain (which is later diagnosed as PN pain)
just suddenly started one day, was that *initial* pain continuous for a few
minutes, or continuous for a few hours, or constant all day long, or continuous
for several days, or continuous for many consecutive days, until it subsided? [I
ask this because I understand the PN pain problem just suddenly starts for
many.]

2) I know this PN nightmare causes exasperation and desperation. How long after
the sudden start of the PN problem did some choose to have surgery? Is it
generally too late for surgery say 3 yrs. after the sudden start? Has surgery 5
yrs. from the sudden start still benefitted some PN patients? Does the option
for or the recommendation for surgery all hinge on what caused the PN in the
first place, i. e. from an accident, birth of a baby, exercising, etc.?

3) Is the site where the pudendal nerve is thought in some to be entrapped
between those 2 large pelvic ligaments close to the anus or rather
far from it in the pelvis? [I realize that the pelvis isn't as big as a football
field, but I still wonder how physically close the usual entrapment site is to
the anus. You see, I wonder if nerves that are damaged by the anus cause the
physical pain there by the anus or can entrapment in the pelvis far from the
anus cause the physical pain to be felt at or around the rectum and anus.]

4) Since the physical pain moves around over time, does it finally generally
settle into one area of the pelvis?

5) How much gabapentin do some PN patients take? I wonder what a daily upper
limit is for this drug.

I look forward to any info you can give me.

1. The pain first started when I had a bad cold and was coughing and sneezing a lot. At first we thought it was a groin hernia, event to the point of minimally invasive surgery to repair it. But they found nothing.

2. It took almost two years to determine it might be PN. I saw Dr. Conway first in May of 2010 and had PT, EMG, and nerve blocks before, surgery was considered. Dr. Conway put me on disability on the 2nd of August 2010 and the surgery was the 8th of September 2010. So it took 4 months to finish the non-surgical options first.

3. I had 3 separate issues found with my 2012 surgery:
a. true entrapment at the bottom of the pelvis in the falciform process.
b. Scarring of the sacrospinous ligament onto the PN.
c. the nerve entangles in a vascular bundle.
And yes damage anywhere along the pudendal branch to the spine can cause pain in the anus or anywhere else in the lower branches.

4. my pain can move from place to place on a daily basis I can have:

a. "kick in the nuts pain" with or without radiating into what feels like the kidneys
b. burning groin non genital pain
c. Severe bowel pain.
d. Sharp pain in the penis and anus
e. specific pain in the scrotum

Any or all of these can change dynamically throughout the day.

5.
I am allergic to Gabapentin even at a 100mg dose. It caused a peeling rash and I had major cognitive issues on it. This makes lyrica and all other off limits for me. I did "stick with it" for the two weeks under supervision of my PCP to verify that the effects were not temporrary. But in that time I did observe that it made me "just not care" about the pain. But I can see how it may work for others with less side effects.

As for dosage this is straight from Phizer:

Only about 32% of patients see greater than 50% reduction of pain. So it is not a magic pill by any standars but it does help allot for 1 of every 3 people

In adults with postherpetic neuralgia, Neurontin therapy may be initiated as a single 300mg dose
on Day1, 600mg/day on Day2 (divided BID), and 900mg/day on Day3 (divided TID). The dose can subsequently
be titrated up as needed for pain relief to a daily dose of 1800mg (divided TID). In clinical studies, efficacy
was demonstrated over a range of doses from 1800mg/day to 3600mg/day with comparable effects across the dose range. Additional benefit of using doses
greater than 1800mg/day was not demonstrated.

I hope it helps.