Help me understand the "Relieved by sitting on a toilet seat

[kia kaha]

I know that one of the diagnostic criteria for PN/PNE is
Symptoms are relieved by sitting on a toilet seat.

I have not been officially diagnosed with PN/PNE still searching, but this criteria just doesn't fit with me.
How does it work? I mean I am just needing a bit more detail about exactly what it means..

I have never had the experience of sitting on the toilet and experiencing any kind of relief from the pain.
I only sit for the time it takes to pee or do the other 'motion' which may at maximum be just a few minutes.
How can just a few minutes sitting like this relieve pain?

I have not been able to sit 'normally' for at least 2 years, I never sit unless I am doing a short trip in the car, and thats just once a week now if at all and only for about ten mins to the local shops/physio. Of course sitting exacerbates the pain so I avoid it at all costs.
But I have never had relief from sitting on the toilet...??

[Bathsheba]

Hi Kia

We both got this PN problem from hydrodistentions.

In my case, I feel better when I sit on a US toilet seat. This is because in the US anyway, toilet seats allow the whole pudendal area (the area between where you pee and the anus) to just sink down with gravity. This releaves pressure on the pudendal nerve. Unlike sitting in a regular chair, there's nothing pushing the pudendal area back up into the pelvis to irritate the nerve. [I foolishly sat 1.5 hours in an uncushioned wooden seat a few days ago without my "PN cushion" and am paying the price.] Similarly, PN pain lessens or disappears when you stand up or lie down. In both cases, no pressure on the PN.

Because you have IC issues, you may be experiencing pain when on a toilet seat because of painful pee-ing. I also remember you had/have problems pee-ing (urinary hesitancy, which I curiously also have a little). Most people with PN don't have pain when they urinate or problems urinating, so your inability to "feel better" sitting on a toilet seat may be due to IC or just bad feelings associated with sitting on a toilet seat. I am not an MD, but it's just a guess. Try just sitting on the seat without doing anything for a few minutes and let your "innards" fall down and see if there's any difference.

In any event, I wouldn't worry about your inability to pass the "toilet seat test" as you have complications others don't, like urinary hesitancy.

Hope you are able to catch the wave and feel better.....

[kia kaha]

still confusing.
So is it an instantaneous thing? when you sit?

I used to be ok standing up, but now standing in a fixed position (like in front of my easel painting, standing doing dishes/cooking) kicks pain in after 20 mins.
Also When I lie down to sleep at night, the pain down my legs to feet gets way worse.

NZ toilet seat

[kia kaha]

ps, when I pee it is not painful peeing.

[Biker George]

I don't know that it will always be the case that sitting on a toilet seat will relieve the pain of PN/PNE. It is just that compared to a regular/flat seat, a toilet seat is going to be more comfortable, for the reason that Bathsheba stated . . . that the toilet seat distributes your weight to areas around your perineum and prevents weight from being directed to the area where your pudendal nerve runs.

My experience with PN was that there was always some lag with the pain and the lag with pain relief. Sitting would be OK at first but the pain would build. Standing following a period of sitting would not stop the pain, it would just take away the aggravating factor, and then, over time, the pain would die down.

It sounds like you have some IC issues and I don't have any experience with that. I am sorry to hear that you are in pain and I urge you to hang in there. You will find a way.

[kia kaha]

Ok, I'm a bit slow sorry, I get it then.
And the lag pain thing, i definitely understand!

[Violet M]

I don't remember that sitting on anything let alone a toilet seat ever relieved pain. I had pain 24/7 no matter what I was doing. I did not fit all of the Nantes criteria in that article but I consider my PNE surgery a success.