Surgery dilemma

[Violet M]

Thanks for the update, Koshu. It's a relief to get through surgery and hear that things went as planned. Take it easy and don't get discouraged if you go through different stages of recovery. Some people report increased pain as the nerve wakes up so just remember healing takes time.

Violet

[Jack_johnson]

I'm nearly a week post-surgery now so thought I'd share a quick update.

Everything went to plan, the surgeon said I was entrapped on both sides and more so on the right. He performed bilateral decompression, including of the anal-rectal branch (as constipation is one of my symptoms). I have 4 incision wounds around my abdomen, all very small. The gas pain from the laparoscopy was quite severe but has now subsided. I'm fully mobile but my abdomen is sore and I need to be careful making any movements that impact it. I'm still sleeping on my back currently, which isn't ideal.

Some initial observations are:
- I experienced complete sensation loss from the penis and anus initially, it is slowly returning. The sensation on the penis is currently of the cold, unpleasant kind, certainly nothing erogenous, but it's very early days.
- there was an initial improvement in flaccid length but this has now gone back to what it was pre-surgery.
- Immediately after surgery I was barely able to control my bowels and bladder but this has improved. I've been having bowel movements every day, albeit small ones currently.
- prior to surgery I was unable to empty my bladder of urine - there would always be some left which would sometimes come out after I'd left the bathroom, especially if I bent down. This seems to have completely resolved overnight and now my bladder always empties (fingers crossed it doesn't regress).
- the last two nights lying in bed I have had slight erections (say 60-70% firmness), it's really weird as I can't feel it properly until I touch it with my hand, due to the sensation loss. Prior to surgery, this wasn't something that happened.
- one of my symptoms was some sites of very itchy skin - one on the right side scrotum where it joins the leg, one on the inner-top of the right buttock and also pruritis ani (itchy anus, which I have had for 10+ years and need to use hydrocortisone cream for every 3-4 days). These all seem to have resolved overnight, though it's very early days and I'm taking nothing for granted (certainly not with the pruritis ani which may still be impacted by sensation loss).

As I say, very early days and I'm being careful not to read anything into what I've observed so far.

These were all similar to my experience. I’m about 8 months out and I still have ED but it was explained to me that since I still have penile numbness on the right side where compression was that the nerve is still regenerating. Prior to surgery I had a slight ache on the inner right buttock if I sat for to long or drive long distance, my glans could never fill, penis felt firm like water hose, post urine dribble after urination, muscle contractions when pooping which sometimes made it difficult to poop. All these symptoms have went away but I still have no erogenous sensation in penis but I suspect this will be the last to recover.

[April]

Thanks for the updates, Koshu. Glad to hear it went smoothly. As others have said, it can take a long time for the pain to subside. I think my pain continued to decline for about 1.5 years after my surgery.

April

[koshu]

These were all similar to my experience. I’m about 8 months out and I still have ED but it was explained to me that since I still have penile numbness on the right side where compression was that the nerve is still regenerating. Prior to surgery I had a slight ache on the inner right buttock if I sat for to long or drive long distance, my glans could never fill, penis felt firm like water hose, post urine dribble after urination, muscle contractions when pooping which sometimes made it difficult to poop. All these symptoms have went away but I still have no erogenous sensation in penis but I suspect this will be the last to recover.

Interesting that you also had the post urine dribble and that this went away. This is the most notable thing I've experienced so far, it's a small win but kind of great to be honest, I wasn't really expecting any immediate improvements at all. The amount of times I used to have urine dribble down my trouser leg minutes after leaving the toilet was crazy, hopefully the improvement stays.

In terms of your case, I guess 8 months is still early days as Bollens advises 6-24 months recovery (that's a small dot on the horizon for me at the moment!)

It will be interesting to see what happens with erogenous sensation, I was bilaterally compressed, there are areas of my penis that are sensitive (but not erogenous) and areas that are completely numb - more so than prior to surgery, which I was expecting. Despite this, flaccid hang and blood flow does seem to be improved compared to before surgery, night time erections are sporadically continuing, anywhere between 60-100%.

I am also now entering the nerve pain phase, this is generally manifesting in a dull yet sharp ache in the perineum/lower scrotal area. Just got to endure it.

Thanks for the updates, Koshu. Glad to hear it went smoothly. As others have said, it can take a long time for the pain to subside. I think my pain continued to decline for about 1.5 years after my surgery.

April

Thank you - my case was slightly strange in that there was no pain to speak of really, it was purely functional issues.

[Jack_johnson]

These were all similar to my experience. I’m about 8 months out and I still have ED but it was explained to me that since I still have penile numbness on the right side where compression was that the nerve is still regenerating. Prior to surgery I had a slight ache on the inner right buttock if I sat for to long or drive long distance, my glans could never fill, penis felt firm like water hose, post urine dribble after urination, muscle contractions when pooping which sometimes made it difficult to poop. All these symptoms have went away but I still have no erogenous sensation in penis but I suspect this will be the last to recover.

Interesting that you also had the post urine dribble and that this went away. This is the most notable thing I've experienced so far, it's a small win but kind of great to be honest, I wasn't really expecting any immediate improvements at all. The amount of times I used to have urine dribble down my trouser leg minutes after leaving the toilet was crazy, hopefully the improvement stays.

In terms of your case, I guess 8 months is still early days as Bollens advises 6-24 months recovery (that's a small dot on the horizon for me at the moment!)

It will be interesting to see what happens with erogenous sensation, I was bilaterally compressed, there are areas of my penis that are sensitive (but not erogenous) and areas that are completely numb - more so than prior to surgery, which I was expecting. Despite this, flaccid hang and blood flow does seem to be improved compared to before surgery, night time erections are sporadically continuing, anywhere between 60-100%.

I am also now entering the nerve pain phase, this is generally manifesting in a dull yet sharp ache in the perineum/lower scrotal area. Just got to endure it.

Thanks for the updates, Koshu. Glad to hear it went smoothly. As others have said, it can take a long time for the pain to subside. I think my pain continued to decline for about 1.5 years after my surgery.

April

Thank you - my case was slightly strange in that there was no pain to speak of really, it was purely functional issues.

Was your numbness to all tactile sensations on penis or just sexual/ arousal sensation before surgery?

[koshu]

Was your numbness to all tactile sensations on penis or just sexual/ arousal sensation before surgery?

There was no erogenous sensation at all, overall I’d describe the sensation as being changed rather than numb, though I think there were areas of the shaft that were numb. The glans was sensitive in a kind of uncomfortable, almost painful way.

[Jack_johnson]

Was your numbness to all tactile sensations on penis or just sexual/ arousal sensation before surgery?

There was no erogenous sensation at all, overall I’d describe the sensation as being changed rather than numb, though I think there were areas of the shaft that were numb. The glans was sensitive in a kind of uncomfortable, almost painful way.

I had pretty much the same, if you want to exchange info for support and stay in contact through this process I’m willing to. It can be a rough process if done alone.

[koshu]

Was your numbness to all tactile sensations on penis or just sexual/ arousal sensation before surgery?

There was no erogenous sensation at all, overall I’d describe the sensation as being changed rather than numb, though I think there were areas of the shaft that were numb. The glans was sensitive in a kind of uncomfortable, almost painful way.

I had pretty much the same, if you want to exchange info for support and stay in contact through this process I’m willing to. It can be a rough process if done alone.

Sounds good, I'll PM you.

[koshu]

I'm now 2 months post-surgery and massively regretting the decision to get the surgery. The initial improvement in night-time/morning erections has now completely gone and I'm back in the position I was, only with 100% loss of sensation (who knows how long that will take to return) and a load of scars on my stomach. I'm also unable to reach orgasm even with viagra.

My conclusion is that I'm sure he was right that I was entrapped by the ligaments on both sides, but that this is probably relatively normal in a lot of people, and that the true entrapment is in the pelvic floor. I've concluded that the underlying cause of this and all my other issues is fascial restriction. I am going to start treatment for myofascial release via the John F Barnes approach. I wish I'd discovered this months ago, maybe then I wouldn't have been so desperate that I got the surgery. Looking on the bright side, I did at least have this realisation before getting the hip arthroscopy.

[zazzaleon]

Dear Koshu ,

I am sad to hear that you are not getting better .

You had the surgery done from Dr. Bollens ? you do not have any improvement at all ?