Hi Jim,
I'm really sorry to hear about your problems. Such a long time to have these symptoms! I completely understand what you're saying about docs/specialists not being able to or willing to consider nerve conditions, and it doesn't look like they've been helpful to you. Is the incontinence your only symptom? Would it be possible for you to schedule an appointment with one of our listed PN doctors? Or go to Dr. Potter in NYC for an MRI of the PN and rectal branch?
Warm regards,
Karyn
Possible PN, Chronic Incontinence
Re: Possible PN, Chronic Incontinence
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: Possible PN, Chronic Incontinence
Hello JimPat,
I agree with Karyn that you should try to see a PN doctor if you can. Do you have any pain in the rectal area? Most of us do. I don't have any experience with the incontinence, though. Sorry I can't be much help.
I agree with Karyn that you should try to see a PN doctor if you can. Do you have any pain in the rectal area? Most of us do. I don't have any experience with the incontinence, though. Sorry I can't be much help.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Re: Possible PN, Chronic Incontinence
Hi Jim,
I'm posting this article abstract not to suggest you try neurostimulation but to point out that there are physicians who consider pudendal neuropathy to be one of the possible causes of fecal incontinence. Since a branch of the PN controls the anal sphincter it would only make sense.
http://www.ncbi.nlm.nih.gov/pubmed/20173472
Dis Colon Rectum. 2010 Mar;53(3):273-8.
Sacral nerve neuromodulation is effective treatment for fecal incontinence in the presence of a sphincter defect, pudendal neuropathy, or previous sphincter repair.
Brouwer R, Duthie G.
Academic Surgical Unit, University of Hull, Hull, United Kingdom.
Abstract
PURPOSE: To assess the effectiveness of sacral nerve neurostimulation in the setting of sphincter defects, previous sphincter repair, or pudendal neuropathy.
METHODS: A total of 55 patients underwent insertion of a sacral nerve neurostimulator for fecal incontinence. There were 52 female and 3 male patients, with a mean age of 51 (range, 25-65) years and a median follow-up of 37 (range, 15-41) months.
RESULTS: There was a significant improvement in the median Cleveland Clinic continence score for all of the patients, from a median of 15 (13-18) before insertion of the neurostimulator, to a median of between 4 and 7 during the follow-up period of up to 48 months. (P < .001-.008). Patients with a sphincter defect on endoanal ultrasound, a pudendal neuropathy, or a previous sphincter repair did not show any significant differences in continence scores during the follow-up period (P = .46, .25, and .81, respectively). The Fecal Incontinence Quality of Life score also showed a significant improvement on all 4 scales, Lifestyle (median 2.00 baseline to 3.00-3.70 P = .001-.008), Coping/Behavior (median 1.56 baseline to 2.89-3.22 P = .001-.007), Depression/Self-Perception (median 2.29 baseline to 2.93-3.71 P = .001-.005), and Embarrassment (median 1.50 baseline to 2.17-3.00 P = .001-.013) after insertion at all time intervals up to 36 months. The Fecal Incontinence Quality of Life score was higher than the baseline at 48 months but only statistically significant for Lifestyle (median 3.10, P = .04) and Coping/Behavior (median 2.63, P = .03) scores. There were 6 device-related complications.
CONCLUSIONS: Sacral nerve neuromodulation results in a significant improvement in fecal incontinence and Fecal Incontinence Quality of Life scores after medium-term follow-up, even when there is a sphincter defect or pudendal neuropathy.
PMID: 20173472 [PubMed - indexed for MEDLINE]
Constipation and IBS are common complaints of PN patients and some do have fecal incontinence. I've pretty much gotten rid of those problems post PNE surgery and by using magnesium citrate on a regular basis along with a diet high in fresh fruits and vegetables.
I don't know of any good docs in the area you are asking about but you could check out the list of PT's at this link http://pudendalhope.org/node/63#TX and maybe one of them could evaluate you for possible pudendal neuropathy and direct you to a PN-aware doctor in your area. I was diagnosed by a physical therapist -- the docs had no clue what was wrong with me.
I'm posting this article abstract not to suggest you try neurostimulation but to point out that there are physicians who consider pudendal neuropathy to be one of the possible causes of fecal incontinence. Since a branch of the PN controls the anal sphincter it would only make sense.
http://www.ncbi.nlm.nih.gov/pubmed/20173472
Dis Colon Rectum. 2010 Mar;53(3):273-8.
Sacral nerve neuromodulation is effective treatment for fecal incontinence in the presence of a sphincter defect, pudendal neuropathy, or previous sphincter repair.
Brouwer R, Duthie G.
Academic Surgical Unit, University of Hull, Hull, United Kingdom.
Abstract
PURPOSE: To assess the effectiveness of sacral nerve neurostimulation in the setting of sphincter defects, previous sphincter repair, or pudendal neuropathy.
METHODS: A total of 55 patients underwent insertion of a sacral nerve neurostimulator for fecal incontinence. There were 52 female and 3 male patients, with a mean age of 51 (range, 25-65) years and a median follow-up of 37 (range, 15-41) months.
RESULTS: There was a significant improvement in the median Cleveland Clinic continence score for all of the patients, from a median of 15 (13-18) before insertion of the neurostimulator, to a median of between 4 and 7 during the follow-up period of up to 48 months. (P < .001-.008). Patients with a sphincter defect on endoanal ultrasound, a pudendal neuropathy, or a previous sphincter repair did not show any significant differences in continence scores during the follow-up period (P = .46, .25, and .81, respectively). The Fecal Incontinence Quality of Life score also showed a significant improvement on all 4 scales, Lifestyle (median 2.00 baseline to 3.00-3.70 P = .001-.008), Coping/Behavior (median 1.56 baseline to 2.89-3.22 P = .001-.007), Depression/Self-Perception (median 2.29 baseline to 2.93-3.71 P = .001-.005), and Embarrassment (median 1.50 baseline to 2.17-3.00 P = .001-.013) after insertion at all time intervals up to 36 months. The Fecal Incontinence Quality of Life score was higher than the baseline at 48 months but only statistically significant for Lifestyle (median 3.10, P = .04) and Coping/Behavior (median 2.63, P = .03) scores. There were 6 device-related complications.
CONCLUSIONS: Sacral nerve neuromodulation results in a significant improvement in fecal incontinence and Fecal Incontinence Quality of Life scores after medium-term follow-up, even when there is a sphincter defect or pudendal neuropathy.
PMID: 20173472 [PubMed - indexed for MEDLINE]
Constipation and IBS are common complaints of PN patients and some do have fecal incontinence. I've pretty much gotten rid of those problems post PNE surgery and by using magnesium citrate on a regular basis along with a diet high in fresh fruits and vegetables.
I don't know of any good docs in the area you are asking about but you could check out the list of PT's at this link http://pudendalhope.org/node/63#TX and maybe one of them could evaluate you for possible pudendal neuropathy and direct you to a PN-aware doctor in your area. I was diagnosed by a physical therapist -- the docs had no clue what was wrong with me.
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.
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desperatehousewife
- Posts: 7
- Joined: Sun Jul 03, 2011 7:03 am
Re: Possible PN, Chronic Incontinence
Jim, I also suffer from very mild incontinence after bowel movements ever since I had rectal surgeries. If I drink Metamucil once or twice a day I don't have a problem at all as it bulks/gels the stool. If that is your problem then this will surely help. Please note that it has to be metamucil, not benefibre/mirilax, etc. as you need the selium fibre to gel your stool. If you have a problem with holding it in, then I suggest pt and possible electrogalvanic stimulation. Your pt should also help instruct you how to do kegals appropriately which would help tone and strengthen your rectal muscles. There is also a procedure called sphincteroplasty done by a colorectal surgeon, but I would do that as my absolute last resort as it is supposed to be quite painful and needs to be redone usually over time.
Re: Possible PN, Chronic Incontinence
Just a quick note to mention that for people with PN, doing Kegels exercises usually tend to make symptoms worse not better. So please be very careful if you do this exercise, most of us avoid it like the plague.desperatehousewife wrote:..... pt should also help instruct you how to do kegals appropriately which would help tone and strengthen your rectal muscles.....