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[Dutch]

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[AliPasha1]

Hello Dan,
You definitely have some sort of neuropathy. I am not sure whether it's the dorsal nerve that has been compromised or it's the PN.Please have your MRI done with Dr. Potter and have all the Pn scanned in adiition to the rectal branch,Perenial branch as well as the dorsal nerve when it branches off the Pudendal nerve in the Alcock's Canal and it passes through the Pubic symphysis all the way to the bulb of the Penis.

You can use the following script which I developed with my Urologist.

MRI of the Pelvis with special attention to the Pudendal Nerve from the ischial Spine to the Alcock’s Canal including the grip of the Sacrotuberous Sacrospinous ligament as well the falciform process of the Sacrotuberous ligament.I would also like the Dorsal Nerve of the Penis after it branches out of the Alcock’s Canal all the way to the Pubic symphysis and the bulb of the Penis, the Perenial branch of the Pudendal Nerve as well as the Inferior Rectal branch of the Pudendal Nerve imaged. In addition, please also include the Genitofemoral, ilioinguinal, Cavernous,Posterior Cutaneous Nerve and Obturator nerve, suspensory ligament of the Penis as well as the whole Pubic Symphysis and if possible please also include the lumbar sacral plexus.


Regards,
Ali

[Philip]

Hi Dan,

Your symptoms are (obviously) typical to what falls under the symptom complex of pudendal neuralgia (which says nothing else that you have pain in the area of the pudendal nerve, which you have). If you have done your research you will have encountered a host of different definitions ranging from pelvic floor dysfunction, pudendal neuralgia, pudendal neuropathy, pudendal nerve entrapment and maybe/probably also chronic prostatitis, levator ani syndrome, myofascial syndrome, the list is sheer endless. This reflects the complexity of the diagnostic approach and the significant overlap.

A couple of things are key to understand. From what you write it sounds very unlikely any direct damage to the dorsal nerve of the penis has occured, most likely what you experience is radiation pain from a somehow irritated pudendal nerve more proximal. This is reflected by the association with sitting and BM. The relief after BM is related to the fact that when you have BM you relax the pelvic floor muscles, which are often in overdrive when you have an issue with the pudendal nerve. You say the pain is constant, is that also true when you lie down or when first getting up in AM?

Now, you need to find a doctor that can set up a diagnostic plan. You write that you already had physio, injections etc., was that at a centre that understands pelvic floor issues or "random" doctors? A visit to a colorectal surgeon might also help just to rule out anal fissures, hemorrhoids etc. which can sometimes mimick pudendal neuralgia, or aggravate it etc., but very rarely explain the whole thing

The key is to get a good doctor or pelvic floor centre that can look after you if you don't have one yet. They should be able to assess if you need an MRI with Potter or not and if you need to consult one of the notorious surgeons talked about in this forum.

Best regards,

Phil

[Kit]

Dan, sorry to hear about your pain. I have had penile pain for about 7 years. In late 2003 I started having a lot of pain sitting, with the pain at the right side sit bone area (ischial tuberosity). I had PNE surgery by Dr. Ansell in Houston in April 2004. After I recovered from surgery, the sit pain was still there, but no other changes. However starting on Dec. 2004 I started having penis pains in addition to the sit pain, and the two pains were connected, meaning that if I sat too long my butt hurt and my penis hurt. I tried all sorts of things over the next months and years, but nothing helped. The penis pains got so bad that I am not on a very high amunt of methadone (30MG 3 times per day) and without the methadone, I would be screaming and rolling on the floor.

Eventually in 2009 I found info about Dr. Filler's MRN (MRI for nerves) in LA. I had that MRN done and it showed massive scar tissues where Dr. Ansell had operated. Dr. Filer subsuquently did surgery in APril 2009 to remove all the scar tissue. The surgery was successful in that the scar tissue was removed, and maybe it helped a little bit. But there really was no improvement in the penis or sit pains. So I can only conclude that the penis pains were not from the scar tissue.

I am possible going to have the Dr. Potter MRI, and then if it shows high probability for improvement from another surgery, I would have Dr. Hibner do a 3rd surgery. But all of this is very tentative.

I am writing this just to let you know that you are not alone out there with penile pains from probably something to do with the pudendal nerve. I do hope you find some relief. Please let me know if I can help in any way. If you want to email me direcly I am at kit.mcdowall@q.com.

[PN-SufferVT]

Dan (and Kit)

So sorry to hear about your pain. I wanted to post to give a little inspiration. I too suffer primarily from penile pain, which started in June 2009. The level of pain went from very little to a lying in bed crying wanting to die level by fall of 2009. After I got a hold of myself I realized, one that I wasn't alone in this battle and two that I was going to some way beat this. I, like others did LOTS of research on forums such as this, but also have focused on thinking outside the box. First, thing that helped me is that I learned to RELAX. Second, I eliminated what flared me as much as I could. Furthermore, I started taking Namenda, which helps a lot at a 20mg dose (with low or no side effects). Yes the drug is not indicated for pain, but google namenda (memantine) and chronic pelvic pain (cpps) and check out findings. My daily pain levels are now between 1-4. Yeah not perfect, but I was at a 10 daily.

Lastly, don't give up.... I am part of a clinical study (that I can't talk about) that has some very promising data.... There are some BRILLIANT docs outside the regularly spoken of physicians on this forum working towards a solution.

[AliPasha1]

Hi PN-VT,
I totally agree with you.We need to look outside the box and find a solution.Almost all of the PNE surgeons have failed to provide satisfactory results.

Hi Kit,
I am very sorry to hear that you became worse after your surgery with Dr. Ansell especially the Penile pain.I would strongly suggest that you have a 3 Tesla MRI with Dr. Potter and see to what extent the damage was done by Dr. Ansell''s surgery.I am curious to know whether your dorsal nerve,Perenial Nerve has been compromised or not.
Dr. Hibner sounds like a sound solution.However,it needs to be seen that how badly Dr. Ansell severd your ligaments and whether Dr. Hibner can reconstruct your ligament especially the Sacrotubeorus ligament.And secondly,we need to find the source of the Pain.That is the most important thing.It is quite possible that the pain is being referred from the Dorsal or Perenial Nerve branches of the Pudendal Nerve rather than the main trunk of the Pudendal Nerve itself.You don't need a third surgery and get the same result.
What was Dr. Ansell's response to why you developed Penile pain and your sitting pain never got better after the surgery?
Regards,
Ali

[ezer]

Kit,
I am sorry to hear about your continuing problems. If I remember correctly, Botox in the obturator internus helped you a lot after your first surgery. Is there a reason why you stopped doing those injections?
Did Dr.Filler only remove the scar tissue or did he check the previous decompression at the alcock's canal?

Dan,
Unfortunately your problems are not out of the ordinary and I share many of your complaints. I had a bad reaction to Botox but I understand that it is certainly worth a try.

[AliPasha1]

Gentleman,
If you want to have Botox Injection in your Obturator Internus muscle,the best option is Dr. Noor Gajraj in Plano,Texas.I had two sets of Botox injections.One with Dr. Bautrant before my Pudendal Nerve surgery with him and the other one after seven months after my surgery with Dr. Noot Gajraj.

It didn't help me at all.It is only good if you have Obturator muscle spasm.However,it could be a good idea if you can get a dorsal nerve block and see if it helps.It is quite possible that the pain is being referred from the dorsal Nerve to the Alcock's Canal.

Both procedures are safe procedures and are unlike the Pudendal Nerve blocks which can flare you for weeks,months or do permenant damage as in my case.

Regards,
Ali

Ezer,
Who administered your Botox injection in the Obturator Internous muscle?

[AliPasha1]

Phillip,
I don't disagree with you regarding the Pudendal Nerve.However,I would like to mention that I had a dorsal nerve block and my sitting Pain,burning in the Penis,Urinary burning all diminished completely for 5 hours.The most remarkable thing was that I could sit on any surface for that amount of time.

It was administered by Dr. Noor Gajraj and it was just a phenomenal feeling of relief.

Regards,
Ali

[Kit]

Thanks to everyone that responded to my post. First, no one should be constantly suffering from penile pain or any other pelvc pain. There are many pain control meds that will at a minimum just stop the pain. My preference for years now has been methadone. Who the heck cares if it is an opiate and probably addictive if it stops the unbearable penis pain. As I said earlier, I take 30MG 3 times a day, and if I keep my sitting and lifting/ walking/exercise, etc to a manageable level (almost none), I can lead a reasonable normal life. Of course there are about 90% of the things I would like to do that I can not do, but I can avoid almost all pain by popping a few pills and keeping within my limits.

Also, I do not know if my penis pains are due to something Dr. Ansell did or just due to the progression of the pudendal problem. My guess is that it is the pain progression. And someone asked what Dr. Ansell said about the development of penis pain. Evidently you have not dealt with Dr. Ansell. Once the surgery is done, he is just unreachable and does not give a rip what your status is.

I was very impressed by Dr. Filler. He had to dig through a huge mass of scar tissue on both sides. He also checked out my posterior femoral cutaneous nerve at my request and it was not compressed. He was super good at the surgery and to me was pleasant to talk to. I talk very net as does he. As I read the surgery report, I do not think he went past the entrance to the alcocks canal, but he was all around the ares and did not see anything other than the masive scar tissue. Both he and I expected that removal of the scar tissue would remove all pain, but it did not.

My belief is that both my original sitting pain and my oenis pain are caused by either some compression of the pudendal nerve that has not been found in the 2 surgeries, or else the pudendal nerve is just somehow broken/malfunctioning.

The really sad part is that I am in excellent health and if I could sit without pain, I would basically be full speed again. I may never find the source of the problem. It has been over 7 years now and I have seen many of the world's best doctors and PTs but here I am. I am OK if that is how it turns out. But I intend to get the Potter MRI and see what it shows. If it indicates high probability of success by a 3rd surgery, Dr. Hibner has said he will do the surgery. And he does take Medicare.

Here is my new wish for you all: May your butt not hurt and your sexual organs be only a source of pleasure.

Kit