Health Organization for Pudendal Education

Hello everyone,
I am asking for advice and opinions of the group. I was doing so well until the last few weeks. I am 11 months post-op and having some trouble and pain again. I seem to have regressed and need the advice of those who have been through this.
I was progressing and doing more things and having fewer flares and able to sit more and suffering less......then all of a sudden, the pain starting coming back and I am not sure why. I am in a flare right now, but I sat in a car yesterday on a trip and I am sure that is why. I am still suffering in the gluteal fold and the back of my leg. I am pretty sure my posterior femoral cutaneous nerve was irritated in the surgery, but I seem to be hurting all over right now. I am still walking and trying to get stronger, but it is hard to know what I can do at this point.

Would love to hear if anyone regressed after 11+ months and what I could have done to cause the pain.

Thanks
Barb

I just wanted to report that I am better. I didn't want people reading my last post to be discouraged from surgery if that is what they had decided. It truly is a roller coaster and even at almost a year, I can see that I have improved, but still have a long way to go. The flares are much better, but I still have them if I am not smart. Riding in cars for long distances is definitely a trigger. I have, however, had a few trips this summer where I was ok. Two to three hours seems to be the max that I can ride in the front seat before I have to go to the back and stretch out.......but I know that is much better than a lot of us and I am very grateful for that.

I am at a point in my recovery that I am wondering what I can do and what is not a good idea. I am still in PT and my therapist has been working on the opposite side from surgery because I have had a lot of piriformis pain that is causing a lot of problems. I am using the TENS and that seems to help. The main thing I am struggling with is the gluteal fold and thigh burning caused from the irritation of the PFCN during surgery. It is slowly getting better, but I do mean SLOWLY. The strength in my leg has really gone down and I need to build it back up, but don't want to cause a flare.

I also need advice on how to break up scar tissue around the incision. It is still very tender. Also is it ok at this point to do acupuncture on the surgery side? Any thoughts on this would be appreciated. Also exercises that are ok at this point.

I am determined to continue this fight. I still have those moments where I just want to lay on the couch and do nothing', but I know that will just make me weaker......so I try to walk regularly. Besides, we just got a puppy that is full of energy. I am not sure what we were thinking since we are grandparents, but he definitely keeps us moving. He is soooooo cute and fills that hole in our hearts that was left when our 16 year old Bichon died in April.

Hope everyone has a great day! Thanks!
Barb

Barb,
Interesting your question about scar tissues was with acupuncture because my acupuncturist put needles around the scar and broke up the scar tissue. PT was amazed! Hope you find someone that can help.it is definitely a roller coaster.
Janet

HI Barb,

janetm2 wrote:Interesting your question about scar tissues was with acupuncture because my acupuncturist put needles around the scar and broke up the scar tissue.

I had the same experience as Janet with acupuncture. I went twice a week, starting at five months post-op; so you should be OK if you decide to try this treatment.
It was very effective for me and hope it will be for you, too!

Kind regards,
Karyn

Thanks Janet and Karyn. That's great news that it helped you. I did acupuncture before surgery and it always made me feel better temporarily, but of course I didn't know the nerve was entrapped, so it was not a permanent fix. I will try again now.

My PT worked around the scar yesterday and around the greater trochanter area and I am really tender today. There are a lot of trigger points in the piriformis on BOTH sides, even though surgery was on my right side. I HOPE the PFCN on the surgery side will calm down soon. The skin in the gluteal fold and down the back of my leg is REALLY annoying because it feels like sunburn all the time. I can't seem to find anyone who had this after surgery, but it is slowly getting better......just hope it is temporary. I am in a bit of a flare this morning. I think I have been bending over way too much, but with a new puppy, it is really hard not to.

Thanks again
Barb

Barb wrote: The skin in the gluteal fold and down the back of my leg is REALLY annoying because it feels like sunburn all the time. I can't seem to find anyone who had this after surgery, but it is slowly getting better......just hope it is temporary.

Barb, I used a TENS unit for the burning down my leg after surgery. Mine was due to the obturator internus being in spasm and 2 hours a day of using the TENS unit really helped. http://www.pudendalhope.info/forum/view ... =36&t=5266

Some people say cold laser therapy helps the incisional pain and scar tissue. Can't say for sure because I haven't tried it but maybe something to add to your list of options.

Violet

Barb


When did you develop leg pain after surgery? Your sciatic nerve may be irritated because your surgery expose your sciatic nerve in addition to pudendal nerve.

Hopeman

Hi Violet,
Thanks. I have been using the TENS some, but when I put it on the gluteal fold and the back of my leg, I can't feel it. I have it turned up, but the feeling on the skin is not back yet. It is very hard to explain. I guess if the PFCN innervates the skin, that's why I can't feel anything. It does feel like sunburn, but it doesn't have the same sensation as the normal side. It is getting better, but wow....it is taking so long. The area around the incision is still tender, but it feels like normal skin. Did you use the TENS for 2 hours at one time or did you break up the time? I use for 30 minutes then I give myself a break.

I have been thinking about cold laser. I am going to give acupuncture a try for the scar tissue.



Hopeman,
I developed this sensation right after surgery. I have had sciatic nerve pain, and this is not that. It is just an irritation of the nerve that innervates the skin. Hopefully, it will go away soon.

Hi Violet,
Thanks. I have been using the TENS some, but when I put it on the gluteal fold and the back of my leg, I can't feel it. I have it turned up, but the feeling on the skin is not back yet. It is very hard to explain. I guess if the PFCN innervates the skin, that's why I can't feel anything. It does feel like sunburn, but it doesn't have the same sensation as the normal side. It is getting better, but wow....it is taking so long. The area around the incision is still tender, but it feels like normal skin. Did you use the TENS for 2 hours at one time or did you break up the time? I use for 30 minutes then I give myself a break.

I have been thinking about cold laser. I am going to give acupuncture a try for the scar tissue.



Hopeman,
I developed this sensation right after surgery. I have had sciatic nerve pain, and this is not that. It is just an irritation of the nerve that innervates the skin. Hopefully, it will go away soon.

Barb wrote: Did you use the TENS for 2 hours at one time or did you break up the time? I use for 30 minutes then I give myself a break.

I used it for 2 hours at a time to relieve pain from the obturator internus and piriformis muscles being overly tensed due to PNE. I guess if you can't feel it, you have to be careful about using it too long or turning it up too high.

Violet