Health Organization for Pudendal Education

Hi everyone, I'm having a bit of a dilemma about which surgery to do first - pudendal nerve release by Dr Bollens in Belgium (this is currently booked for August) or a hip arthroscopy to resolve a cam deformity (FAI) and labral tears.

The pudendal symptoms I have are loss of penile sensation (numbness, rubberiness), severe erectile dysfunction, slow urine stream, weak ejaculation and constipation. I can also feel a nerve-like sensation in the right buttock sometimes which I presume is the pudendal nerve being pinched. Occasionally that nerve feeling will change to a painful, pulsating ache, but generally my condition is a functional one rather than a painful one.

Over the years I've tried many physio-type techniques and nothing has worked. I heard about Dr Bollens earlier this year and wanted to give it a try, since I'm a single 30-something man and my life is miserable due to these issues, and I just want to do something (plus it feels very relevant in terms of the nerve, vein and artery being trapped). He even mentions Crossfit (which was the catalyst for my symptoms) and uneven pelvis (which I have) as risk factors for entrapment. That said, accounts I've read suggest that it can cause worsening of symptoms in the short-term and results may not be apparent for a long time after the surgery. The aftermath of the surgery is also painful and unpleasant.

After I'd booked the surgery with him I got a hip MRI which has revealed cam deformity (FAI) and labral tears. There are multiple references online (including on here) about this being relevant to pudendal symptoms, which makes sense as the surrounding muscles to the hip are compensating, which can include the pelvic floor.

I'm due to see a hip preservation specialist soon and will be asking about an arthroscopy.

It feels like the sensible thing to do is postpone the Bollens surgery, get the hip surgery first, see what difference it makes and then maybe look at the Bollens surgery next year instead. Getting the hip repaired first feels like getting the foundations of a house right before fixing other issues. But there's another part of me that wants to stick to the original plan and get the arthroscopy done later in the year, so that I'm attacking it from both angles.

Anyone have any thoughts on this?

I just had surgery for severe ED with bollens, I’m on month 6 as of now. My main symptoms were ED, weak urine stream, glans wouldn’t fill up, and no sexual sensation in penis. I was told I would be at 80% recovery at this point but that is definitely not the case. So far I think blood flow may be a bit better but it is hard to tell with having no sexual sensation. I also had random ache pains in my inner butt in my inner sit bone before surgery.

Yeah to be honest I'm not seeing many people who are 80% recovered from it, the reviews seem to be mixed though I have seen someone who's recovered 40% penile sensation from 0% after 6 months, which I would be delighted with.

Curious to know if you had reduced flaccid size prior to the surgery and if it made any difference to that at all? And have the aches and pains by the sit bone improved? Also any improvements in bowel movement frequency?

Koshu, To make an educated decision you need to know what the risks are with the hip surgery and how likely are you to end up with a bad outcome. Sorry, I don't know the answer to that. With PN surgery you always run the risk of having pain you didn't have before, so you have to decide if your quality of life is already so bad that you are willing to take that risk. I know it's a tough decision. I wish you the best with your decision.

Violet M wrote:Koshu, To make an educated decision you need to know what the risks are with the hip surgery and how likely are you to end up with a bad outcome. Sorry, I don't know the answer to that. With PN surgery you always run the risk of having pain you didn't have before, so you have to decide if your quality of life is already so bad that you are willing to take that risk. I know it's a tough decision. I wish you the best with your decision.

Thank you - the quality of life is so bad that the risk is worth it, I want both surgeries (hip and pudendal release), it's just a question of which comes first. Intuitively I think hip, but the pudendal surgery is already booked for 8 weeks' time and I don't want to cancel. Also, part of me thinks I just need to get that nerve untrapped ASAP, and the laparoscopic release would surely achieve that faster than the hip surgery, which is more indirect.

Maybe I'll have a chat with the pudendal surgeon and see what he thinks.

Hi Koshu,

Just wondering how it went for you and whether you decided to go ahead with the PN surgery.

Violet

Hi, yes, I’m having the pudendal release next week. I spoke to a hip surgeon who is aware of the procedure and is happy with the plan. I’ve told him I want the hip arthroscopy too and we’ll hopefully get that done later this year.

Wishing you a successful surgery and a speedy recovery, Koshu. Saying some prayers for you.

Violet

Good luck with the surgery, Koshu! Keep us posted on your progress.

Take care,
April

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.