Health Organization for Pudendal Education

Thanks for the info, Violet. That area of numbness is still there, though it may be a bit smaller, but it doesn't bother me at all. I'd be okay if it never came back, I think. I am still doing well. The intensity of the burning is lower, and I never get the stabbing and knifing pain on the left that I used to sometimes get. And I can go without ice or heat (heating pad) until evening most days, so all of that is a big change over pre-surgery pain. But the pace of improvement has slowed, and the past two days were a bit worse than the previous days. But, I'm assuming that could be the nerve waking up (I remember reading posts from you saying there is an uptick in pain when the nerve starts to come back). I am even starting to very slowly tapper off of one of my medications (which could also explain the slight uptick in pain). So, I'm doing well and continue to feel hopeful about it all.

April

Hi April,

It sounds to me like you are doing amazingly well compared to my progress post-op at the same point! So I think you have very good reason to be hopeful but you do have to be careful not to overdo things too soon. The recovery will have many ups and downs so what you are experiencing is normal. Hang in there, April!

Violet

Thanks, Violet! The last two days were really good (almost no icing or heat during the day), so I feel like I'm past this last spell of increased pain---at least for now. I know that there could be lots of ups and downs ahead.

April

Wow, that is amazing to be doing that well already! I am so excited for you, April.

Violet

Hi April,

I have a quick question for you. After your surgery, were you able to do stairs? This is a big concern for me. I have surgery scheduled for 3/29/19 and I have a lot of stairs in my house.

Hi Hiking Spider,

I was given instructions on how to do stairs (good leg up first, bring bad leg up that same step, then good leg up, bring bad leg up to that same step). But, I did not have to do them at all for the full 8 weeks of recovery because our house is all on one floor. I don't think I would have had any problem with them, though, because I did get in and out of a car many times, and that was not a big deal. So, I wouldn't worry about it, especially if the surgery is just on one side. You are at a heightened risk of falling, though (something the nurses emphasized when I was in the hospital and when I was discharged). I had a walker (from CVS) for that recovery period, though, and that made it much easier to get around the hotel. (We brought it with us to Phoenix.) I did, in fact, tumble over once in the hotel when I wasn't using the walker.

Are you doing the surgery with Conway? Does he sound confident about being able to decompress the nerve?

April

Thanks for the info April:) Yes, I am having surgery with Dr. Conway. He fees confident, he said, a lot of time he finds a piece of suture left behind causing the problems from the the hysterectomy. Of course, he said there's no guarantees. My biggest fear is, he will find the nerve has been permanently damaged. Then all this will be for nothing.

Could you explain why there is a heightened risk of falling. Do your muscles give out? Is it because of the meds?

I think the heightened risk of falling was related to the pain pump, which made the area around the pudendal nerve numb. In some positions, I felt like I didn't fully control my left leg. I remember thinking that the couple of times I tumbled, so it must have been the numbness. The walker was great though. As long as I had that, I had no concerns about my stability.

Good luck with surgery! Keep us posted!

April

Hi Everyone,

I ordered my surgical records and thought that a few of the sentences from this detailed report might be of interest to those of you who are considering decompression surgery and aren’t sure what they do or what they could find:

“The left pudendal nerve seemed to be significantly flattened between the sacrotuberous and sacral spinous ligaments and also densely attached to the left sacral spinous ligament. Using sharp and blunt dissection the entire nerve from approximately 1 cm above the sacral spinous ligament to halfway into the Alcock’s canal was freed up. The rectal branch was also clearly identified and also cleared of any scar tissue.”

I’m also going to edit a few words in my first post to match this since that may be all some people read.

I’m still doing really well. I'm continuing to experience drops in pain, although the changes are slow. Ice is almost a thing of the past for me (!!), though I do still use a heating pad in the evenings (about half the time). That might change as I continue to taper off my medications, but I’m letting myself get hopeful!

April