Delayed pain?

[Barre]

Is it normal with PN that when seated it's mostly just discomfort and/or some minor pain but once I get up after thirty seconds or a minute I get intense burning pain and great discomfort in perineum/sitbone/groin?

Why not while actually seated?

And is it normal to just have pelvic pain and cramped piriformis but no noticable functional problems?

Erection normal, orgasm normal (maybe slightly less intense), very minor constipation but I do seem to have urinary urgency, but nothing too serious.

Pain, especially during a flare up can be 8/10 and discomfort 10/10 though .

Now I realize after three years with this that everyone experiences different symptoms but my symptoms always confuse me.

I'm pretty devastated at the moment because the past six months I had improved ALOT ! I would say about 80 % better, but after the holidays I sat alot and picked up hobbies again and now the symptoms are back and twice as bad as ever, just standing or walking causes burning pain in anus and groin, still intermittent though nut very worrying nonetheless.

[Violet M]

Is it normal with PN that when seated it's mostly just discomfort and/or some minor pain but once I get up after thirty seconds or a minute I get intense burning pain and great discomfort in perineum/sitbone/groin?

Why not while actually seated?

And is it normal to just have pelvic pain and cramped piriformis but no noticable functional problems?

I'm sorry to hear your symptoms have come back worse.

It might depend on where you are at in your progression of the disease as to how much pain you have with sitting. Early on, sitting was no problem for me. It became more of a problem later. I didn't have delayed pain with sitting, but I had delayed pain with other activities, such as stretching/exercise. Eventually, I had pain in every position. It's pretty common for people to report their symptoms changing.

Yes, you can have pain without major functional problems. One neurologist told me that what type of PN symptoms you have depends on which nerve fibers are affected. My piriformis muscle was eventually affected too.

Violet

[Barre]

Thank you,

I have been to Bollens twice and he offered surgery twice but each time I canceled or said no.

But I guess that the best long term solution is laparoscopic surgery, seems I have little choice left if I ever want to have some decent quality of life.

PT etc seems to work but temporary at best, one or two missteps and back to square one or worse. And it's expensive and time consuming. Not worth the effort in.my opinion.


I'm just worried about the risks, or that it's not pne but you can never gave 100% certainty.

And about the risks, Bollens just shrugged and said that he did over 600 surgeries and noone ended up worse or with permanent complications but it's still a matter of statistics. We take risks everyday, just walking out the door is a risk, getting struck by lightning is a risk but we don't think twice about it.

Just hoped to avoid it, and if I was alot more disciplined maybe I would have been and kept alot better , but such is life, I screwed up (again) ....

[Violet M]

Hi Barre,

It is a very difficult decision. I wish you the best with whatever decision you make.

Violet

[Barre]

Hi Barre,

It is a very difficult decision. I wish you the best with whatever decision you make.

Violet

After another visit to doctor Bollens I finally decided to go ahead with the surgery, everything is already planned for the 30th of April.

Based on my somewhat atypical symptoms he will try and cut the piriformis muscle using the laparoscopic approach. According to Bollens this should relief pressure on the sciatic and pudendal nerve, it's supposed to be minimal to no risk surgery because with this surgery he doesn't have to touch the actual nerve so recov should be much smoother and straightforward b.

There is still the risk that it won't give sufficient relief and some people are also entrapped/compressed deeper at alcocks cabal and I will need a second more classic surgery.

It was a difficult decision but it's made .

Will keep you updated.

[Violet M]

Hi Barre,

Seems like a reasonable decision, especially since it sounds like the risk is low. Praying it will be successful, and no more surgery will be needed. I would be interested to hear how it goes for you.

Violet

[April]

Thanks for the update, Barre. This is a hard decision, but your decision to try this less invasive procedure makes sense, given the low risk. Let us know how it goes.

Take care,
April