Has anyone had this happen during recovery

[sightandsound]

I had bilateral pudendal nerve decompression about 10 weeks ago now.

Prior to surgery, my main symptoms were that sitting extensively, exercising, bending over/squatting a lot, or sexual activity would cause increasing flaring of burning pain in my perineum/penis along the urethra/midline, followed by premature ejaculation, painful ejaculation, frequent and painful urination and incomplete voiding, constipation, etc. during the flares. If I did nothing for a long while, it would settle down and I’d otherwise feel mostly ok. I share a lot of symptoms with hard flaccid it seems.

After 7-8 years of conservative treatment I finally went for surgery. The first few weeks were painful, but mostly just in a surgery/butt meat is sore kind of way. However about 2 weeks in I started to get a significant flare of the burning midline pain along my perineum to penis. Pressing along that corpus spongiosum/urethra line I can find sensitive areas that cause burning pain, though they move around and come and go. I can’t lay on my side or my legs compress this area and cause burning. Urination was constantly painful and would leave a lingering vague pelvic burn for hours. Almost anything would flare it- sitting for 15 minutes caused a week of high symptoms.

It’s been like that since - though the last few weeks, I’ve had more good days than bad, the good seems better and the bad slightly less bad, and I’m possibly starting to turn the corner. My pelvic floor PT insists the midline pain I’m feeling is the pudendal nerve flared, but I’m concerned it may be unrelated hard flaccid symptoms, made worse by the surgery. Just wondering if anyone had similar post surgical pain, how long it lasted, etc.

It currently is keeping me from even attempting to sit, or drive, go to work, do any exercise, etc. I know a lot of people say at 3 months is a common time to start seeing improvement, but that always seems framed as “improvement from pre surgery baseline” - I’m wondering if anyone was much worse for this long.

[Natedogg91]

Hi Sight,

I’m about 7 months post op and I was definitely almost worse pain wise with sitting for the first few months with significant improvements in nerve function. It really does take a while for the nerves to settle down and start developing in their new home if your nerves/vessels were transposed during surgery. My best advice is as your healing try to minimize sitting and start to do pelvic floor stretching if you can tolerate it.

I had very similar symptoms to you prior to my operation which unfortunately would not respond to conservative therapies because I truly had PNE on the left side. It truly is a waiting game and a game of patience. There are no guarantees that you will be pain free even at that 2-3 year mark but the hope is you’ll be a lot better off than you were and if the nerve is able to glide with good mobility all of those symptoms should improve significantly. I would say I have atleast a 50% reduction in pain, it does still burn but I can actually tolerate sitting for hours now instead of minutes and obvious other improvements like being able to have sex again is life changing in itself Good luck!

[sightandsound]

Hey Natedogg, thanks for the reply. Since our symptoms were similar, just wondering - was sitting always a pretty immediate trigger for pain? Or only when you were flared up?

I ask because if I wasn’t flared, I could sit on a cushion for hours and hours (sometimes) - like flights to Europe length - without causing too much pain, or even a flare. It was really the sexual activity that would normally get me (or sitting POST flares)

[Natedogg91]

Within 5-10 minutes I’d have pretty intense pain going down my perineum into the scrotum with sitting in general, the firmer or harder the chair base the worse it would be. Sexual activity would send my pelvic floor muscles into awful spasms and nerve flaring for quite sometime. Bowel movements as well. Symptoms can be somewhat variable from person to person depending on where the nerves are tethered/compressed and pinched and how long they have been as well so they don’t necessarily have to mirror mine. I hope you start to get some more relief over the next 6 months!

[Violet M]

It can be pretty scary when the pain gets worse after surgery. I had a significant increase in pain and I was scared that I had made a huge mistake. It's common to have increased pain at the 3-4 month period after surgery when the nerve is "waking up". I couldn't even start walking much until 5 months after surgery. But by 9 months post-op I was able to go off narcotics. Are you taking anything for pain to help get you through this difficult time?

I can’t lay on my side or my legs compress this area and cause burning. Urination was constantly painful and would leave a lingering vague pelvic burn for hours.

You could try sleeping with a pillow between your knees when you lie on your side. I found it very helpful.

Violet

[sightandsound]

It can be pretty scary when the pain gets worse after surgery. I had a significant increase in pain and I was scared that I had made a huge mistake. It's common to have increased pain at the 3-4 month period after surgery when the nerve is "waking up". I couldn't even start walking much until 5 months after surgery. But by 9 months post-op I was able to go off narcotics. Are you taking anything for pain to help get you through this difficult time?

I can’t lay on my side or my legs compress this area and cause burning. Urination was constantly painful and would leave a lingering vague pelvic burn for hours.

You could try sleeping with a pillow between your knees when you lie on your side. I found it very helpful.

Violet

I’m taking pregabalin and a rectal baclofen that has helped with pelvic floor tightness, but that’s all. I’ve cycled through many drugs with no relief up to this point, I’m not sure the pregabalin is even helping but it can’t hurt

I’ve used a pillow between my legs from time to time, I need it to make it through hour long trips to the PT in the back seat, but sleeping I try to avoid it because it still seems to irritate the nerve a little bit

[Violet M]

You are still pretty early out of surgery so hopefully your symptoms will calm down with a little more time. I couldn't even think about doing PT for almost a year after surgery - the thought was just too painful. If you are already doing PT you are way ahead of where I was! So please don't give up hope yet. There will likely be better days ahead.

Violet

[sightandsound]

I know that it’s early, but honestly - the fact I can do PT with no problems concerns me more.

All sorts of hard flaccid symptoms I either only had mildly or didn’t have at all before, have sprung up. The actual hard flaccid with reduced sexual sensitivity pretty much as soon as I stand up, visible veins, almost entire loss of erections - all of these directly post-surgery.

I don’t know the mechanism by which these could be triggered by this surgery - all I can hope for is the nerve is still flared and it causes these symptoms. But it seems more unlikely by the day.

[Violet M]

What surgical approach did you have done? Have you asked the surgeon the mechanism for how these symptoms could have gotten worse? I remember I had some reduced sensation after surgery - I guess you could call it numbness, but not as pronounced as what you are describing. It slowly improved over time though.

Violet

[sightandsound]

I had TG bilateral decompression. I havent talked to the surgeon yet as I’ve been waiting to see if it would go away.

It appears all the surgery has done is amplify my existing hard flaccid symptoms from a bad but livable level to a “can’t leave the house” level. Extremely pessimistic about these symptoms resolving themselves now. Tomorrow is 12 weeks out