Health Organization for Pudendal Education

I'm in my final year of university and want to start doing work at my desk again, as I find laying in bed with my laptop fairly unproductive and it has got to the point where my pgad gets worse from just laying down anyway.

Pgad is my main symptom, I have mild pain when sitting but the pgad is the thing that really destroys my concentration. So yesterday I decided to create a makeshift standing desk as I always find my symptoms are far less after a long walk. After standing for an hour or so I was fine, very happy in fact. But then about half an hour later the pgad hit me, then I started to get pain along the course of the nerve.

What I don't understand is why this would make me worse, I mean there is no pressure on the nerve area at all, and if I went for a 3 hour walk for example, I'm sure I would have been mostly fine.

I'm currently in search for a good cushion, although I'm not holding out too much hope as everything seems to trigger it!!

Any suggestions on what I could use? And any ideas on why standing makes it worse but walking kinda improves it?

Thanks for reading!

Hello,
I can only relate my experience, so I would take it in context of others...

I too had pain from prolonged standing.

Then, the day after TG surgery any link to standing pain was gone. In my case my scarred STL had adhered to my R pudendal nerve (from heavy cycling). Once it was disconnected (by surgery) from the nerve it no longer tugged on it, causing pain. Pre-surgery core exercises also led to a lot of pain - post-surgery = no pain linkage. Our tissues and bone structures are connected.

Best,
Bob

td,

Standing and walking are the same and sometimes worse than sitting is for me. So, what you say matches my experience. In fact, I've been meaning to post this as a question for months but have been too swamped with work to find time. But I'll ask it now: Do others have this experience with standing and walking? For me, there is just a big dichotomy between lying down or reclining (which is how I work at home) and all upright positions. When I get out of bed in the morning, I usually feel an immediate change in sensation---usually (because it's early in the day) it's a mild needling that kicks in, which then gradually changes to the usual burning. I sometimes (maybe 10-12 times since this started 20 months ago) feel sharp nerve pain from sitting (at the left ischial spine) that leads me to lean to the right to get my weight off of that spot or, if possible, to stand up. But that is it. Normally, sitting it just like all the other upright positions.

I'm scheduled to see Dr. Hibner in December and will get an MRI, and as someone else posted earlier, it seems odd to get the MRI while lying down since that is the very best position for us. If something is impinging on my pn (which is how it feels), it doesn't happen when I'm lying down. So, it is hard to imagine how this MRI will show that. But, perhaps misalignment can be revealed when lying down even if the misalignment is not impinging at that time.

Thanks,
April

I could not stand for long periods of time either. I would get increased burning pain when standing for very long. I agree with what RJR said about the ligament impinging on the nerve.

Violet

Thanks, Violet. So, the ligament impinged on your nerve just like RJR? I do wonder if that is what is going on with me. I didn’t cycle, as you did RJR, but I did intensively work out on a step machine, which is a bit like your weight lifting and exercise trigger, Violet. Hopefully, Dr. Hibner can give me at least a little more insight in December.

travelisdangerous, in my haste the other night, I missed the important part of your post noting that walking is actually not a problem for you—it’s only sitting and standing. That is different from my experience since walking is just like the other upright positions for me. But, it sounds like we all (on this thread) had/have troubles with standing as you do. I don't know why one would trigger it and the other not. But I do know that I almost never know what triggers a flare; my pain fluctuates for reasons that are almost always unknown to me. In fact, I've kept a diary of activities for over a year, and I've concluded that several things I thought were triggers (e.g., steps) are probably not. I'm not sure if that is helpful, but since you can walk okay, you might try the standing desk a few more times just in case your pain the other day was triggered by something other than standing.

April

April wrote:Thanks, Violet. So, the ligament impinged on your nerve just like RJR?

Yes. I don't know if it was exactly the same as RJR's but Dr. Bautrant had to sever the sacrospinous ligament and shave off some of the sacrotuberous ligament at the falciform process.

Violet

Standing has got to be better than sitting all day but even standing for long periods of time isn't good.
I use one but mine is electric so I can lower it to seated if I want. It's also really good half way up when seated so you can rest your head on it and have a snooze. I'm not joking...

Standing is better than sitting for me, but I find that after a few hours, I start to ache down there. I have a standing chair that tilts you, that supports your lower back. With that and a theraseat cushion, I can last without too much pain.