Health Organization for Pudendal Education

Thanks to all for taking an interest in my recovery. I have finished my third week of recovery. I had an emotional setback when my dog of 11 months was hit and killed by a car. With the snowstorm keeping me at my daughters three more days and having my dog die while I was gone was horrible. I'm trying to not let this incident keep me from relaxing enough to heal properly. I have not had any pain in the PN area and none of the symptoms I had prior to surgery. But then again, I am mostly resting and not sitting at all. I will be calling Dr. Conway around week 8 if all is still going well. I dont know if a follow-up visit is necessary or not. But i will call and find out when PT is advisable. I have a PT here who is trained in pelvic floor disorders and PN and follows all literature she can. She is looking for information on how to follow up with me. If anyone knows how she can get more info, let me know. I think the PTs from San Francisco are giving a conference out East that she will be attending. I go upstairs once a day and down once a day.


Unfortunately, I must have blocked a lot of what happened in NH because I don't remember some of the issues. However, one was having to crawl into a car and lay in an S in the back seat. I assumed I would get a medical transport to the hotel. Also, I should have asked for a ADA room. My blood pressure was extremely low and I had two incidences of almost passing out at breakfast, moving around too fast.

Anyone who has any info about how to determine when I should increase activities. Because I was done bi-lateral most of the guidelines I have read apply to those who've had only one side done.

I appreciate any and all thoughts, comments, etc.

Grace

Dr. Conway found the nerve on my left side twisting around a ligament. The other side had scar tissue and was rubbing against bone.

My sensation of numbness is gone, left last week.

Hi GraceAnn,
I'm so very sorry about your dog. OMG! Please accept my heartfelt condolences for the loss of your family member.
Glad to hear your PN pain has subsided a bit. It's normal to have ups and downs for the first few months. So please don't feel like you've had a set back, or that something's wrong if your pain increases again. I got the best post-op recovery advice from Dr. Conway - IF IT HURTS, DON'T DO IT. I know that doesn't sound very helpful, but it really is that simple. This isn't something you can push yourself through. Healing and recovery really should be measured in months, not days or weeks. Gradually try to increase your activity level and be aware of how each activity affects you. Everyone is different, so be aware of your limitations and use them to the best of your ability.
Hugs,
Karyn

Very sorry about your dog, that is so sad but you are right to try and keep positive and think about your recovery.
I do love your last sentence btw. I have tons of numb areas and although a lot of them don't effect me much, the worst is in my heels and back of right thigh. The pain builds under the numbness there and it's great to think that this can improve, so thanks
Actually one evening I was so uncomfortable I went to bed, trying all sorts of plumped and rolled pillows for comfort. . . . .to no avail so decided to lie on my front (as I always do; does nothing for a fresh morning face) with a small pilates ball tucked between my hip bones. I really got it tucked right in and moved about on it slightly. Suddenly I felt an audible give (not quite a snap) in my piriformis near where it hurts most and immediately a small square of feeling opened up in my heel. I do think this must have been a give in scar tissue slightly releasing the sciatic nerve, although I have to say, 2 years later I could not accurately identify the small square now as it seems to have melded into one numbness again.
I don't believe that means things are worse again just the slight difference isn't noticeable, there definitely was a difference. Your post has reminded me of this which I'm sure points to a good outcome from surgery for me too.
Thanks,
Helen

I have been put on increased amounts of what I call "head meds" by my therapist. I think due to the surgery and the added emotional stress of Maxx dying; I was in a downward spiral. I began having anxiety attacks during the day and a dread of going to bed. She has upped my Xanax and Lamictal to give me help maintaining my feelings. I was taking these meds prior to surgery for depression and anxiety.

I have begun to feel more tingling in my groin and under my " cheeks". I also have great difficulty with burning in my left thigh and under left buttock from laying on my side. I am using a pillow under my knees when on back to minimize low back pain.

Anyone have thoughts on walking at this point, or better thoughts for laying. Will try small pilates ball suggested. I have started my 4th week post-op, been walking in circles in house for 10 minutes twice a day. No pain.

Thanks to all,

Grace

Grace, I'm sorry about the loss of your beloved pet. You have been through a lot of stress lately but so far your surgery recovery sounds very promising. From what I've read, I think moving around frequently is important to prevent scar tissue formation around the nerve. Dr. Antolak (who taught Dr. Conway surgery) recommends gliding exercises to prevent scar tissue. The instructions are here: http://www.pudendalhope.info/node/46#GlidingExercises

Violet

Once your surgical scar area has healed, water walking sounds like a good plan, as advised by Dr Dellon. I know some wouldn't recommend him but this advise seems good to me as it helps with support while moving.

Hi everyone. Just wanted to say that I am having a lot of burning down the back side of my left thigh. I had been taking a larger dose of Zanax after my dog died early in my recovery. Now my doctor has been reducing that amount so I'm back to taking the same amount I took before the surgery. Xanax was previously prescribed for depression/ anxiety issues.

Could this be the reason behind the increased pain? Could the Zanax have been masking it? I'm icing groin area everyday. I do know that when I'm anxious I tense up and clench my teeth. Occasionally I take Celebrex on an as needed basis but Dr. Conway said that can mask things. I may be sitting too much but I'm trying to back off that. Laying on my back can also bring on burning sometimes in both legs.....

Any thoughts? I was thinking of seeing a neurologist but don't want to muddy up the waters if this is part of recovery.

Thanks,

Grace

Grace, maybe a physical therapist could help you sort out what is generating that pain. When certain pelvic floor muscles are in spasm there can be pain referred down your leg. It's possible the medication was helping to keep your pelvic floor relaxed and going off of it has caused increased muscle spasm.

Violet