Health Organization for Pudendal Education

From what I've been reading across the HOPE board, it seems that for surgical/injury causes of PN/PNE, recovery or partial recovery (high function with rigorous management) is more likely than for cases with "unknown" causes of onset.

Does anyone know of studies that consider this question?

I have not seen such studies. I'm sure some of the PN doctors have some clinical observations that might answer your question.

I do think from my conversations with a couple of the PN doctors that they are more likely to think a true entrapment if one has had surgery such as mesh prolapse or hysterectomy than a spontaneous onset where they are more likely to think the symptoms are caused by something else.

As far as recovery from PN/PNE, to me, it seems all over the board whether there is a known cause or spontaneous onset.

K. Thanks. Guess it's just a crap shoot anyhoot?
Only on the down days. Trying to stay positive and grateful. I'm not throwing in the towel today. Tomorrow..? Has enough trouble of its own!

Personally, I think it's the "perfect storm scenario" for sufferers without an obvious cause:

1) Anatomical predisposition (long torso or ischial spine causing more tension on the ligaments, narrow nerve tunnels)

2) History of high activity (cycling, sports, weight lifting)

3) An injury (fall that impacts the sacral, tailbone, buttocks area)

4) Inflammatory diseases (endometriosis...etc...)

5) Predisposition to over formation of scar tissue

Please add to the list..........

Let's face it, if it was from sitting too much, EVERYONE would develop this!

Less pain,

Jackie OUCH

JackieOUCH wrote:Personally, I think it's the "perfect storm scenario" for sufferers without an obvious cause:

1) Anatomical predisposition (long torso or ischial spine causing more tension on the ligaments, narrow nerve tunnels)

2) History of high activity (cycling, sports, weight lifting)

3) An injury (fall that impacts the sacral, tailbone, buttocks area)

4) Inflammatory diseases (endometriosis...etc...)

5) Predisposition to over formation of scar tissue

Please add to the list..........

Let's face it, if it was from sitting too much, EVERYONE would develop this!

Less pain,

Jackie OUCH

I think I have many of these factors:

1) I am not sure
2) Yes, I did a lot of cycling and weight lifting when I was young.
3) I had a very nasty fall on my back from a height of about 16 feet at the age of 12. No bones broken but my first pelvic symptoms started approximately three years after this fall. I think this was the fall that caused my cyst, or provoked a small harmless cyst into growth.
4) Yes, I have autoimmune disease.
5) Likely, I am not sure though.

The first major PN like symptoms were triggered in me by excessive sitting. Due to certain major health problems in the 90s, I could no longer lie down in bed and used to sit on a chair and sleep all night - this means I was probably sitting 20 hours a day and several hours continously without change of posture every night. After one year of this ordeal, I started getting the classical PN symptoms in 1995 - unusually excessive sitting for one year had obviously damaged my nerves very badly back then. These symptoms were acute and lasted for two years before mysteriously disappearing. It returned with a vengeance in 2004, again at a period when I was sitting (at work) excessively for like 16 hours every day. But this time the symptoms did not disappear as it did in 1997.

I think if I had been aware at a younger age that I had this cyst, I would not have done all these and I may have been far better off now. For me, unusually excessive sitting was perhaps the single most factor that caused my cyst to go highly symptomatic. And all that sitting were not on suitable or cushioned chairs - they were on hard plastic chairs. No MRI of my spine was taken during the 90s and had the doctors taken me seriously and ordered an MRI back then, at least I would have known that I have a cyst down there and I would have been very careful and probably I would have been in a far better condition now.

Excessive sitting, in conjunction with the nasty fall that either created or triggered a dormant tarlov cyst - are the contributing factors in my case. I also did yoga and lots of stretches and strength building exercises - these were secondary factors. Before the discovery of the cyst in 2006 I thought that the autoimmune disease was the primary cause of my PNE, now I am not sure whether this disease had any major part. ( but tarlov cyst and connective tissue disorders seem to go together, so the connection may still be there)