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
Questions on post-op journey
Questions on post-op journey
12/10- Vaginal prolapse surgery. Surgeon used mesh. Had incredible complications.
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
Re: Questions on post-op journey
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
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
12/10- Vaginal prolapse surgery. Surgeon used mesh. Had incredible complications.
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
Re: Questions on post-op journey
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
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
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: Questions on post-op journey
HI Barb,
It was very effective for me and hope it will be for you, too!
Kind regards,
Karyn
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.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.
It was very effective for me and hope it will be for you, too!
Kind regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: Questions on post-op journey
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
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
12/10- Vaginal prolapse surgery. Surgeon used mesh. Had incredible complications.
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
Re: Questions on post-op journey
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=5266Barb 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.
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
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Questions on post-op journey
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
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
Re: Questions on post-op journey
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.
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.
12/10- Vaginal prolapse surgery. Surgeon used mesh. Had incredible complications.
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
Re: Questions on post-op journey
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.
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.
12/10- Vaginal prolapse surgery. Surgeon used mesh. Had incredible complications.
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
11/11- mesh removed at UCLA.
PT diagnosed hypermobile SI joint
5/13- Potter MRI.... pelvic floor scarring causing entrapment of the inferior perineal branches and the dorsal nerves to the clitoris.
9/13- Prof Aszmann discovered entrapment at ST/SS ligament causing more pain than dorsal nerve....he opted for TG surgery. Also had injection to calm down inflammation at ischial tuberosity. Still healing
Re: Questions on post-op journey
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.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.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.