Health Organization for Pudendal Education

Hello all. My name is Tony. I am a 59 year old man with a chronic and worsening pudendal neuralgia. It started about 3 years ago now and as impossible as it seems to me and my family, it continues to get worse. I am getting to the point that medications barely work and it looks like I am headed to permanent disability. My condition has been verified by 6 different neurologists. I have had a dozen MRIs of all sorts, back surgery, physical therapy, Botox injection and 6 assorted nerve blocks.

I have been to two doctors who do surgery for this who are mentioned in this forum. I have to say I am convinced they are suggesting surgical experiments on me with the primary goal beinbg them taking my money. Some of the forms they had me fill out state over and over again they don't promise any improvement and I may actually get worse. How can I get any worse?

I am otherwise in very good shape. I am not ready to give up living my life, although most of what I loved to do is no longer possible. Sitting is impossible. Plane rides are impossible. Taking long walks is impossible. Intercourse is impossible. And I am in excruciating pain every minute I am awake all over by pelvic area from front to back. This is no way to live!

I am ready for surgery but I am looking for a real reference from someone who has had successful surgery from a doctor they actually believe is trying to help them and not just take their money and run. Some of the doctors mentioned here are gynecologists and will not see male patients. I know, I have tried.

So can anyone who has has successful surgery give me a name and contact information for doctor that can help me? Please

Hello Tony,
I've posted over the last 5+ years under RJR, going the entire journey from conservative treatment to surgery and beyond. I am close to your age. To directly answer your question, I visited 2 surgeons, but settled on Dr. Hibner and Dr. Castellanos in Phoenix. Since they are employed by the hospital, they are not paid by the patient directly, nor are they paid by the number of surgeries. They will not promise you better results than what is commonly stated in this forum, but the chance of you getting worse is very small (IMHO). They will not rush you to surgery.

The more you meet the Nantes criteria, the more likely you might benefit from surgery. Also, if you can relate the origin of your pain to physical trauma or cause, the more likely surgery will help. In my case, bicycling over many years was the cause. So there was something for surgery to fix.

Not knowing the details of your diagnostic journey, I would recommend a MRI done by either Dr Potter (HSS in NYC) or Dr Jan Fritz at Johns Hopkins. Both know the pudendal well. Dr Fritz is also an interventional, and can place the block with the greatest precision.
Best,
Bob
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My suggestion to anyone is do not have surgery. Until much further research is done on this condition which probably will never happen it is not worth damaging your body more

Tony,

You mention you have had MRIs, do any of them show anything unusual? What kinds of PT have you had? You mention several surgeries, have any been in the pelvic area? Was there an event or activity that started your PN pain? I know how difficult and scary this pain is to have. I hope you can find a doctor who can help you sort this out. Surgery can only help if an entrapment of your nerve is what is causing your pain, which can be very difficult to determine. You surely want to explore all other options before considering going down that road.

Stephanies

Hi Tony,

I think it's important to consider your history. What would lead you to believe you have a nerve entrapment that would be helped by surgery? Why are these surgeons recommending surgery? If there isn't a clear indication of nerve entrapment you might want to consider other options. You might want to read konedog4's posts.

I guess I don't really have enough information to comment on whether surgery is something you should consider at this point. One consideration is whether it's possible you have a spinal radiculopathy rather than a peripheral nerve entrapment. You mentioned you had back surgery. What type of back surgery and was it successful? Is it related in any way to the pelvic pain? How did you respond to pudendal nerve blocks? What type of physical therapy did you try and how did you respond to it? Did Botox help temporarily? Sorry to ask so many questions but there are a lot of variables to weigh before even thinking about surgery.

BTW, last I heard Dr. Hibner wasn't seeing male patients anymore. Does anyone know if that has changed?

Violet

Hi Violet,
Unless something has changed since May '15, Drs. Hibner and Castellanos will see male patients.
Bob

Thank you all for your responses. I will try and answer the questions the best I can. My pain started immediately after a digital rectal exam by my primary care physician. That was the moment in time almost 3 years ago that it felt like there was a white hot poker inside me. I should also mention I am (was) an avid motorcyclist riding thousands of miles in some years. I always had two motorcycles in the garage ready for the next week's ride.

My back surgery happened because I have always had lower back pain and an MRI to see what this new pain was showed very severe stenosis. So much so that the radiologist and doctor thought doing nothing could lead to permanent paralysis. The MRI showed a nerve bundle that was completely pinched off. The pathologist who read the MRI thought the there was a severe blood vessel blockage which turned out to be a nerve bugling. By the time I had the surgery the diagnosis of PN was already established. The surgery fixed my lower back problem almost 100% but the PN didn't change. The surgeon never said it would, but though it may help. It didn't.

I have had many other MRI's of my back and pelvis area with and without contrast. They even checked for clots and aneurysms. All of the MRI's show “nothing that would explain the patient's symptoms”. No muscle, tendon or tissue damage of any kind. Everything was listed as “unremarkable”.

I have had Pt from a very knowledgeable therapist on pelvic disorders. She came highly recommended and frankly knew more about PN than most of the doctors I have seen. She worked inside and out if you know what I mean. She finally told me after about 6 months that it was kind of pointless to return since the symptoms kept progressing. I tried acupuncture with no help either.

Botox did absolutely nothing. PN blocks helped for a couple of days at best. But I am convinced they are not getting the right spot.

My two main symptoms are, dagger in the rectum on the right when sitting and severe burning on the left buttock almost all the time. Very tender skin in the entire private are and pain when touching between my legs. There are other pains that are simply to embarrassing to mention. Nerve conductivity test seem to rule out sciatica for the burning, yet it persists non stop even when lying down. As I said before, the medications doesn't seem to help much any more and it just the involved areas just keep spreading.

As for the gynecologists, I was told they will see existing male patients, but they would not take any new ones.

Well, there you go. Let me know if there are any more questions that may help with this nightmare. Thank you!

Hi Tony,

Just curious why you think they are not hitting the right spot with the nerve blocks. I'm assuming they are doing image guided nerve blocks? So it sounds like you are not confident of the diagnosis of PN based on your response to the nerve blocks. Dr. Redmond in South Carolina believes nerve blocks using nerve testing are more accurate than blocks given using image guidance. http://www.pudendalhope.info/node/58#SC If you live on the East Coast you could consider seeing him. He is not a surgeon so would not be trying to talk you into surgery. He has an excellent reputation from everything I have heard.

It is so difficult to determine with 100% accuracy if a person has true pudendal nerve entrapment that might benefit from surgery. Bob mentioned the Nantes Criteria for nerve entrapment which you can find at the following link: http://www.pudendalhope.info/sites/defa ... iteria.pdf
You mentioned you have anal pain on one side. When your PT pressed on the pudendal nerve at the ischial spine via the rectum was that area really tender and did she give you any indication as to whether she thought you had pudendal neuralgia or pudendal nerve entrapment based on her experience?
Keep in mind the inferior rectal nerve can come off of the nerve trunk at different places in different people so a pudendal nerve block may not actually catch that branch of the nerve.

If you are on the West Coast you could consider Jasan Attaman who also is not a surgeon but is very experienced at nerve blocks. You may also be interested in reading the last question I asked him in an interview at this link:(scroll to the bottom for the question regarding spinal radiculopathy). http://www.pudendalhope.info/node/22

If you are interested in a PNE surgeon, the choices I know of in the US are listed in our list of physicians on the website which you have probably already seen. My understanding was that Dr. Ansell in Texas was no longer doing PNE surgery but then recently I heard from someone who was going to have surgery from him so I don't know if he is still an option. He is not on that list. But it sounds like you aren't really comfortable with pursuing surgery. If that is the case, you may want to read Ezer's posts on this forum about the mindbody approach if you are trying to avoid surgery. Other non-surgical options that you haven't tried yet would be electroshock wave therapy from Dr. Kirk Andrew, restorative exercise, http://www.freedomfrompelvicpain.com/re ... lvic-pain/, pain management options such as pulsed radio frequency ablation, cryoablation from Dr. Prologo, manual therapy ( Hesch method) to restore alignment if that is an issue, neuromodulation, or intrathecal pain pump. If you live in the mid US and are interested in neuromodulation you could consider Dr. Barolat in Denver. http://www.barolatinstitute.org/ or Dr. Ken Alo in Houston. http://www.spine-health.com/doctor/pain ... houston-tx
So you have options -- it's just a matter of deciding which you think is appropriate for you. I know it's a tough decision. Maybe someone else on the forum can give you other ideas.

All the Best,

Violet