Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
This is how it all started. My husband could not urinate 2009, went to an urologist to find out why. That doctor said he had an enlarged prostate, and then he removed the enlargement. That's when the pain in the penis only began, and would not go away. After about 6 months of more water and flowmax. He sent us to DR Antolak who did injection about 9 times. When those didn’t work he then did the decompression surgery. That did not work so far. after almost 10 months had 13 injections and 22 injections in the stomach.
My husband is on the current medication Gabapentin 900 mg per day. baclofin 30 mg per day, lorazepan 1 mg per day.oxycodone 5/325 every 4 hours for pain, Lisinopril 10 mg per day. None of these meds work along with 17 20-minute ketamine. He is in pain 24/7 and wants to walk out in front of a truck to kill himself.
Antolak also sent us to a new doctor at the MAPS pain center. They gave my husband and injection that now causes him to have urine leak out of the penis. Because of what my husband tells me, it is from pressure he is feeling in his head to the penis.
We need help and do not know where to go next.
If anyone has any ideas that I could tell this woman and her husband, they would be very welcomed. She's a bit computer challenged, so I told her I'd come here and post her email to me about her husband's problems. He is extremely suicidal and in pain all the time.
All suggestions are welcomed. Thank you.
Greg
Had surgery in Nantes, France in 2001 with Professor Robert. I advocate physical therapy with PTs who specialize in the pelvic floor. I also advocate injections to help diagnose PN and I am in favor of having PN surgery to release the nerve when the diagnoses points to an entrapped nerve.
As Dr Antolak does the TG surgery it may well be that the area of compression/entrapment is at a lower level than the TG surgery would allow access to. That would be any area distal to Alcocks canal. This would also be the area where the male prostate would be located too, just in front of the rectum. It does seem sensible to put the prostate op and pain together chronologically, well I think the lady has already done that.
GregT wrote:
That doctor said he had an enlarged prostate, and then he removed the enlargement. That's when the pain in the penis only began, and would not go away.
Because the perineum or scrotal area are not mentioned it could be the dorsal nerve division of the pudendal nerve that is accounting for the pain. Think the only Doctors addressing decompression in this area are Dr Dellon and Dr Aszaman.
Maybe get her to look at Dr Dellon's chapter 12 which explains this problem and surgical approach to see if makes sense of his symptoms.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
I am new and don't have much experience in what helps, but can share what my pain management does for pelvic pain. He believes doing sympathetic blocks are helpful and diagnostic. Then if any pain control is reached, even if just briefly, they can use a neurostimulator implant. Maybe such a device could help him? I hate this for them both, but hope something provides some relief soon.
Thank you two. Please keep the ideas coming if you don't mind.
Greg
Had surgery in Nantes, France in 2001 with Professor Robert. I advocate physical therapy with PTs who specialize in the pelvic floor. I also advocate injections to help diagnose PN and I am in favor of having PN surgery to release the nerve when the diagnoses points to an entrapped nerve.
This is another comment from the patient who I'm trying to find help for:
I FORGOT TO MENTION THAT WHEN MY HUSBAND TAKES A DRINK OF WATER JUST A DRINK IT
ADDS TO THE PRESSURE. FROM HIS HEAD DOWN TO THE GROIN AREA AND HE
URINATES IT OUT RIGHT AWAY. HE KEEPS TELLING THE DOCTORS THAT BUT THEY
ALL SAY IT IMPOSSIBLE TO URNATE THAT SIP OF WATER RIGHT WAY.
I THINK I BETTER LOOK FOR BETTER DOCTORS. WHAT DO YOU THINK?
Thanks.
Greg
Had surgery in Nantes, France in 2001 with Professor Robert. I advocate physical therapy with PTs who specialize in the pelvic floor. I also advocate injections to help diagnose PN and I am in favor of having PN surgery to release the nerve when the diagnoses points to an entrapped nerve.
Hi Greg. Thanks for your concern for these patients who sound like they are in dire circumstances.
There's a lot I don't know about them -- such as their history, what conservative measures they've tried, and what other possible illnesses have been ruled out already but I can brainstorm some of the available options. Obviously you couldn't try all of them at once and also, I have no idea what their financial situation is.
1. 900 mg of gabapentin is unlikely to give much pain relief so they might want to increase that to at least 1800 or more if the patient tolerates the medication well. Or they may want to switch to lyrica which works better for some people.
2. If they haven't had an evaluation by a PN physical therapist or manual therapist they may want to do that to see if there are any underlying musculoskeletal issues contributing to the problem.
3. If pelvic floor muscles are in spasm try Botox or valium rectal suppositories.
3. Have a Potter MRI to see if there are any obvious continued entrapments.
4. See Dr. Kirk Andrew for ESWT. Some people are reporting great results from this.
5. Make sure related problems such as tarlov cysts have been ruled out.
6. Neurostimulator -- retrograde type like Amanda's???
7. Pain pump -- possibly with prialt? Search for a pain doc who is willing to work with you until the proper placement is found.
8. Try a redo surgery from a different doctor. So far we aren't hearing of good results from the dorsal nerve surgery.
The one thing I would say to this patient is that he hasn't tried all of his options yet so it wouldn't make sense to end it all yet. I've known people who wanted to end it all but kept fighting through another treatment option and now are much better.
Regarding the patient who pees right after drinking water -- I agree that it's not physically possible for that to happen but it could be that it triggers something in his brain that makes him feel like he has to go and what he's urinating out is what was already retained in his bladder????
That's all I can think of right at the moment.
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.
Since the pudendal nerve blocks didn't work that suggests to me that another nerve is involved. And thus no surprise the surgery didn't work. The nerves most likely damaged during a prostatectomy are the cavernous nerves. See below for diagrams. This is another nerve to think about that could be the culprit.
Regarding the Ketamine. Twenty minutes is not long enough and can't get enough Ketamine in in that amount of time to really do any good. They need to find someone who really specializes in Ketamine treatment. They need to try a 10 day outpatient or 5 day inpatient protocol. The amount given 20 minutes is no where near enough.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
Thank you again, everyone. She seems to think that tarlov cysts fit her husband's symptoms very well. She is very thankful for your help.
Greg
Had surgery in Nantes, France in 2001 with Professor Robert. I advocate physical therapy with PTs who specialize in the pelvic floor. I also advocate injections to help diagnose PN and I am in favor of having PN surgery to release the nerve when the diagnoses points to an entrapped nerve.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
