Health Organization for Pudendal Education

I have days where I sit for a few hours only to have pain increase later in the day to the point that I have to lay down and use heating pads and/or ice.

If your pain is “delayed” meaning you can tolerate the activity at the time but suffer for it later… do you consider being able to do that activity “successful”.

I struggle with this. Yes, I sat for 3-4 hours but now I’m laying down regretting it!

The more I go about a “normal” day the worse I can feel. I always feel better when I have option to lay down when I need to for as long as I need to.

So I struggle with work and socializing cause if I have to sit, stand, walk for hours with no chance to lay down … I know it’s likely I am going to feel a flare.

Hi Barb, I had to lie down a lot before I had PNE surgery. I wouldn't consider an activity successful if it caused delayed pain.

Violet

Thank you, Violet for reading and responding to my post. Yes this is something I struggle with after my surgery.

My husband gets upset with me when by the end of the day I am laying down with heating pads and ice. He tells me I just did too much during the day and to stop trying to pretend to family and friends and coworkers that I can handle it because they don’t see how I am behind closed doors.

Truth is, I can handle it better than I used to before the surgery I had but better does not mean “good”.

I am always in low level pain when I sit. And I always feel like I’m sitting on something still.

I struggle and worry every time I sit because I’m so worried that all I’m doing is damaging the nerves again and that I’m risking Chancing my high-level pain coming back on a regular basis.

Violet M wrote: ↑Wed Jul 02, 2025 6:05 am Hi Barb, I had to lie down a lot before I had PNE surgery. I wouldn't consider an activity successful if it caused delayed pain.

Violet

That sounds really difficult when you want to live a normal life but you pay for it later. I can't really blame you for wanting to do stuff cause it's boring to lie around too much. Since activity seems to flare up your pain it makes you wonder if there is still some mechanical problem going on that is causing the nerve to be irritated, but eventually you get burned out on doctors and treatments. I wish there were some new miracle treatments out there but sadly, I am not aware of anything.

Violet

I think a lot of my existing pain is coming from scar tissue from the surgery. I had TG surgery and where my visible scars are is where I feel some of my pain. I also have an area in my labia that is easily irritated and causes the most distracting and hard to manage pain. That’s why sitting too long, walking etc still remains a challenge some days. I don’t know why my pain can be low some days and high other days when doing the same exact activities. It is because of this it’s hard to know what kind of day I will have. I can sit at a desk for some days for 3-4 hours and my pain stays low. Yet another day I’ll be in more pain within 1-2 hours.

Because of everything I have been through even after all these years, I find myself still in a depression and having trouble accepting a lot of things in my life. I have started counseling again. I saw my primary care doctor too and he thinks I should give Cymbalta a try for the depression and for the nerve pain. I think I remember trying Cymbalta very early on in all of this and it didn’t work, but maybe after surgery it’s worth giving a try. I don’t know. I can be anti-MEDICINE.

Violet M wrote: ↑Thu Jul 03, 2025 6:41 pm That sounds really difficult when you want to live a normal life but you pay for it later. I can't really blame you for wanting to do stuff cause it's boring to lie around too much. Since activity seems to flare up your pain it makes you wonder if there is still some mechanical problem going on that is causing the nerve to be irritated, but eventually you get burned out on doctors and treatments. I wish there were some new miracle treatments out there but sadly, I am not aware of anything.

Violet

I understand the comment about being anti-medicine. There can be so many side effects sometimes you just don't even want to try it.

That is curious why some days are bad and some days are better for no apparent reason. Some people say stress affects their pain levels -- I guess stress could cause a person to tense up their pelvic floor muscles more and that could potentially affect the nerve.

Violet