Health Organization for Pudendal Education

Hello, I am new to this forum, but glad I found it. I am a 43 yr old male and have been fairly active my whole life - sports, working out, etc.

I had Unilateral PN Decompression surgery - TG approach on March 27 with Dr. Antolak in Mpls. I have had 2 follow up appts with him - the last was on May 29, just over 2 months post surgery. My symptoms are worse than prior to surgery and he said that it is only temporary, but could not say how long before I see improvement. He said surgery went well, that it was compressed by ligaments, and the nerve was susccessfully released. The nerve had no visible signs of damage.

My main symptom prior to surgery was that I could not sit, drive a car,or be moderately active for any length of time due to pain on the inside of my left glute, next to my rectum, and into my perineum/groin area. This has been going on for about 16 months. I had all other conditions ruled out, and went thru all the standard tests. I have no doubt that it is a PN problem. I have had a series of 4 nerve blocks, which only provided temporary relief.

My question is...Have any of you had a temporary increase in pain/symptoms after surgery? And if so, how long did it take before you had some improvement? From reading prior posts, it looks like Violet had similar issues during her recovery. I was told it could be 9 - 24 months before I was pain free, but at this piont, I'm just looking for any sign of improvement. I also, understand that I may never be pain free, but just hoping for enough improvement that I can live a somewhat normal life.

Any input would be appreciated...Thank you.

Trying to think and look back but I would guess 3-6 months before turning the corner. I could not even imagine working until after 3 months and I only started with 2 hour days. By 6 months I was up to 6 hour days where prior to surgery I only worked 4 five-hour days with Weds off as a break. I just posted my 2 year post op under success stories that may match the "somewhat normal live", not pain free but ar least I am getting around better, dinners, working, etc with some limits. Just take it slow because it is a very slow recovery but there is definitely hope.
Janet

Hello C,

Burning pain was probably worse until about 9 months post-op but there were improvements in some other areas sooner than that. It's hard to put an exact date on things because some symptoms improve and some get worse temporarily. From reading the forums for years it seems that often PN patients who have had surgery report a worsening of symptoms, especially at the 3-4 month mark as the nerve wakes up and then a slow improvement by the 10 month - 1 year mark with more slow improvement after that. It is a bit of a roller coaster during the post-op period, wondering if you did the right thing --at least it was for me. I'm sorry you are having a bit of a rough time right now. Don't be afraid to take pain meds because it's important to try to keep the brain from developing the cycle of pain that is so hard to break. Actually, I did not entirely take my own advice in that regard after surgery. I did not want to develop a tolerance or dependence on narcotics so I did not take the timed release ones. I toughed it out in the AM and just took them in the late afternoon/evening to get me through the night. Are you sleeping OK at night?

Violet

Janet and Violet...thanks for the info.

Exactly...some days I do wonder if I made the right decision to have surgery. Actually, I am sleeping well at night...it seems that is the only time the pain does not bother me, laying flat on my bed. During the day, my groin/perineum pain is pretty bad...I did not have much pain in this area prior to surgery. Pain was mainly in the left side near rectum. I was thinking the new pain is not a good sign, but I guess time will tell.

I'm just looking for enough improvement so I can return to work. I feel like an idiot because after each 4 week follow-up appt, I keep telling work I need to push my return to work date out further. Starting to look like I will need to start back part time cause I won't be able to handle 8 hours/day.

Trying to be patient, but it's not easy (as you know)...thanks again.

Chris

Chris,
One thing that helped was to get up every 20-30 minutes once I was able to work for a break from sitting. I have a desk job but found even if I just got up and picked up a printout from the printer then sat down again it would help me work longer, even better was a little longer walk but just to not stay in place too long was key. I still do it but sit longer now. It is a balancing and pacing act to keep moving without doing too much but it seems to work. I got a vibrating timer for my pocket that just cycled every 20 minutes to remind me. I highly recommend part time if you can, although I always return to base after overdoing things I think in the long run it might be best to stay on gradual increases in activity. Recovery for this condition and sugery is much longer than most other things, hopefully your work can support you for this, I honestly could not imagine this even though I was told but having gone through it there really is no fast way.
Janet

Hi Cconlan,
I had the TIR surgery on Dec. 14 and am still suffering greatly so I hear you big time. If I start doing stuff and do too much I will have a pain flare that knocks me for six and am bedridden for a number of days. It's rough. Be kind to yourself. I do the hydrotherapy which is soothing and take medication and use ice 24/7. I am scheduled to go back to work for Sept., but I think I am going to try to extend my leave and stay off to see if this thing settles. I totally understand your frustration and also question whether I did the right thing. Let's hope we did...I guess with this , the expression "only time will tell," holds a lot of weight:) Hang in there.

Cconlan

It is comforting to see another male in almost the exact situation as myself. I'm a 37 year old male who was active up until this condition hit me almost 5 years ago. I've been through an cycle of conservative treatments including a series of injections by Dr Antolak. Just over a week ago I too had the same surgical procedure. Left side only. I'll be interested to follow your progress as you have a head start. Hanks for sharing. Good luck. We are definitely not alone in this.

sooners56,

After the 3 month mark I actually started to feel a little better. The pain has started to decrease...hopefully it keeps getting better. For awhile I was getting a little discouraged, but I hope this means I am turning the corner, I really need to get back to work - full time. I work in IT - software testing, and I have the ability to work remotely from home - thank God. I just started working half days on 7/2. I usually sit between 2 chairs and have multiple cushions that I use in various ways. It looks ridiculous but at least it helps a little. The pain wasn't too bad while I was working as long as I get up and move around a few times a day.

So how are you doing post surgery? Hope it's going well...

Chris

Grreat news Chris!
Good to hear you feeling better and able to work part time. Still take it easy and hope you continue to get better.
Janet

Chris,

Interesting I too work in IT so I understand the long sitting days. It's been just a month since the surgery and while the surgical pain is gone the lingering effects of nerve pain still exist (as expected). What happens to me is my entire left leg will become numb and it seems to get worse as the day progresses along. It does not seem to matter what my activity level is for that day. The only relief I get is when a take a muscle relaxant (currently Soma). I also take Lyrica but that is for another lingering nerve issue in my feet. My doctor and I have tried so many variations of meds to combat this and Soma is the only cure for me at the moment but I build up a tolerance to it quickly so that is short lived. Good luck with everything. Keep in touch.

Eric