PN after TOT Sling - Journal Article

[nyt]

For anyone who has had a TOT sling (me for example) or those considering a TOT sling.

[Bathsheba]

Interesting article. Points I personally found of interest:

1) all 5 were confirmed PN by "Nantes" criteria. One of the criteria listed in the article was that the patient doesn't wake up at night with pain. I have never heard of this criteria. PN pain worsens a night and lessens during the day. That is one of the symptoms. I wake up in pain at night often. I am a textbook case of PN, which was confirmed by two nerve blocks. Not sure where this criteria comes from;
2) all 5 were supposedly cured by injection of some "anesthetic" -no mention in the article of injection of steroids. Very odd. Documented success rates for PN cure by injection are rare;
3) all 5 underwent hydrodistention of bladder after confirmed PN diagnosis without apparent further exacerbation of PN. This is personally interesting as I got PN when I had the same procedure (hydrodistention) done. Larry (one of the success stories) also got PN from this procedure. I wonder why these women's PN wasn't worsened by the hydrodistention. My operating room notes indicate some screw up took place, as my urologist was training a resident. When I see articles like this I wonder whether my injury wasn't caused by the hydrodistention, but some screw up. I know Larry's hydrodistention was done at some "hick" hospital, so maybe his procedure was also screwed up. Many IC sufferers have had hydrodistention multiple times without incident, but query whether they had pre-existing PN. Guess this article may show that a hydrodistention when done correctly does not worsen previously existing PN????

I guess the "lesson learned" is that any type of surgery or tinkering in the area of the pudendal canal has the potential to cause PN. I am wondering about the miraculous cure rate.

[helenlegs 11]

Thanks for the article nyt, agreed about the 'lesson learned' Bathsheba.
The Nantes criteria (find it in the home pages) does state that the patient doesn't wake up with pain in the night as one of the diagnostic criteria. However, PN can cause a pain 'wind up' or pain 'centralisation' which can affect other muscles and nerves in the pelvis and even elsewhere. Therefore another pathology either separate or due to PN could cause the patient to wake with pain. So many people report that they develop piriformis syndrome after or along side PN symptoms for instance, which may cause pressure on the sciatic nerve and therefore cause the patient to wake with pain.
I know I wake in pain constantly, but it's never true PN pain. (unless constipated)
Do you think this could be something you relate to Bathsheba?

[nyt]

Bathsheba, like you I found this cure rate quite unusual. The purpose of the sling is for scar tissue formation so you would at least think that at least one out of the five wouldn't have improved after the nerve blocks and would want surgery to at least remove the sling. Also, the whole hydrodistention of the bladder was quite puzzling to me. I had awful bladder spasms until my sling was removed because it was to tight and if someone had done that on me I would have been in even more misery.

[Violet M]

Bathsheba, during the worst of my PN journey I frequently woke up at night so I've never quite understood that particular criteria of the Nantes team. And it's hard for me to believe that I didn't have true PN given the amazing improvement I've had since nerve decompression surgery.

Violet