Health Organization for Pudendal Education

My surgery was a month ago. Is it too early to be looking for less pain.? BM are still very painful. Also, I break out in cold sweats from time to time.. Is this from the medication? my incisions are healing nicely . I still have increased pain by the end of the day. I know every one is different, but I would just like to have some sort of a clue as to maybe how long it will be before I notice some changes.... For the past two years I have walked our dog every day for an hour or so.... I have started to walk her in just 15 mintute incriments since surgery and it seems to be ok...Would love to hear from someone that has had surgery... Ellie

Hi Ellie,

Sorry to be the bearer of bad news but a month is too early to expect much improvement, in fact you may be worse for awhile yet. There are a few lucky people who get better that quickly but for most of us it's a long slow process. I didn't start walking again until 5 months post-op and then I just started with 5 minutes a day and slowly worked up. I'm sorry, I know it's very difficult waiting.

Hi Ellie,

It took me a very long time to notice a difference in pain levels. It was 3 months after surgery when I returned to work. Still in a lot of pain. (crying from the struggle and stress of it all.) But getting back to work for a few hours at a time helped distract me from pain. (I was fortunate that my employer allowed me to work a few hours whenever I wanted to.) Most times it was 3 days per week starting with one hour, then 2 then 3 hours. I am now past 3 years of PNE surgery and still only work 3 mornings per week, 7am - 12pm. I get home and rest for an hour or so before tackling any household chores. I now do so much more than I could before but I really avoid heavy lifting, shifting etc.

BM's for me were perfect from about a week after surgery but the PN pain was very high 9/10 for at least 6 months with internal physio. making it worse. I went to the hydrotherapy pool twice a week and walked ever so slowly on flat ground. No more than 15mins. I gradually got this up to 1/2 an hour. Do what your body tells you and no more. Improvise with household chores as much as possible. I used the pick-up tool for about 2 years after surgery. I didn't bend to pick up laundry the laundry basket and if I dropped anything my kids or husband would pick it up. This recovery will see you on a rollercoaster of pain up and down for the next few years. You'll do well one week only to go backwards the next. It's like that and that's a normal occurrence of post op. recovery. I wish you all the very best, take things easy, don't push yourself and try to fight the emotional turbulence in your life as you recover. It's not easy but it is possible to get to a tolerable pain level with little medication. It just takes a LONG TIME.

Catherine
Unfortunately it is going to be a very long, painful recovery but the key is never to give up hope. Keep yourself moving but don't overdo it. Early to bed and get a good sleep. Take whatever meds. you need to ensure a good rest overnight. It helps you cope with the next day.

Thank you both so much for your input...I know this is going to be long... Don't you hate it when people that know you had surgery and they say, are you feeling better now..I now have gotten used to sayinhg 3 to 36 months or longer... I am lucky in that I am able to lie down at will... one thing good about being older... I am going to try to look at every 3 months as a mile marker so to speak. Some one told me one time to take baby steps and look back at 3 months prior.... You both make my heart smile in that you are doing better... HOPE... hugs.. Ellie

Hi Ellie,

It took me about 3 months to start feeling better from surgery. To feel as good as I am now, I would say it had to be in that 9 month area. You are right. People have surgery and others think you should be well within a month. LOL. Just let them know you had nerve surgery, which takes much, much longer to heal. But, I do hope that you keep everyone posted on your progress and I do hope your recovery goes quickly!

Take care,
Wendy

Ellie I am at the 3 month mark and am doing better than I was pre-surgery. Things are different (different pains from muscle atrophy, compensation on the other side, etc.) but the pulling/stretching/stabbing/constant/death/fire of HELL feeling I had in my left Alcock's canal is not there anymore. Right now it just sends off lovely shocks about 20 times a day. I hear this is regeneration of the myelin sheath. So I praise God for each shock.

I hope that this upward "swing" continues for me. I don't want to post an official "report" on my progress until the 4 month mark, when Dr. Hibner says clearly on his paperwork to expect first signs of improvement.

Hang in there,

AM

Last evening when I got to bed, I remembered that for the past two nites I have not said to my self, this is the worst day I have ever had. And then would remember that I had said it the day before and the day before etc...It wasn't that sickening sharp burning fire that brings one to tears .. Maybe it is because I have been lying around a lot more since surgery, but I can only hope...It is still really painful just a tiny titch better.... I am sure I will have some more really bad days but just any little sign gives me hope.... I am going to wait for the Sharp electriclal pain that means the nerve is healing... Ellie

Hi Ellie!
I'm so very happy that things are beginning to feel at least a schmidge better for you! I hope you're as comfortable as can be. Have your gone for your post-op appointment yet? How's your incision pain?
Thinking of you and wishing you the best ....
Love,
Karyn

Post inscision is doing better each day... I got my surgical report this am...
On the right side the falciform
process was prominent and probably compressive int the alcock canal.. the major compression wa in the intrailgamentary space at the ischial spine and at that point and distal to that point the nerve was pale and yellow.
On the left side remarkabably similar findings were noted.On the right side there was a proominent nerve penetrating throughthe falciform process to go to teh anal areea.. possible a cocygeal nerve... there was a 2nd nerve that came from the medial but went laterally and may jave been an inferior cluneal nerve... I did not see those structures on the left .I did dissect what appears to be a separate branch or a clitoral nerve on the left side....
I will skip the procedure.. I do not understand the cluneal nerve.... I have to do some checking here so I better understand this..... Let me know if this makes sense to you... Hugs Ellie

Hello, dear Ellie!
I have to admit, I am having a hard time making sense of your post-op report.

river133 wrote:probably compressive int the alcock canal..

river133 wrote:possible a cocygeal nerve... there was a 2nd nerve that came from the medial but went laterally and may jave been an inferior cluneal nerve...

river133 wrote: did dissect what appears to be a separate branch or a clitoral nerve on the left side....

Is this your interpretation, hon? Or is this what your report actually says? If these are quotes from your actual report, I guess I'm uncomfortable with:
"probably"
"possible cocygeal nerve"
"may have been an inferior cluneal nerve"
"what appears to be a separate branch ..."
Uhm, maybe this is good news if he was able to dissect the dorsal nerve to the clitoris. (?)
So, it appears you had bilat TG surgery? Are you able to sit at all? I'm really glad the incision pain is getting better and hope the rest of you is feeling better real soon!
Hugs,
Karyn