An Introduction to PNE - Does PNE Mimic
IC and Other Urological Conditions?

Speaker: Dr. Ken Renney,
Houston Orthopaedics Sports Medicine Associates,
P.A. Houston, TX
Moderator: Jill Osborne, ICN Founder, Santa Rosa, CA
Date: August 19, 2003 - ICN Guest Lecture Series

INTRODUCTION - Wecome to the ICN Guest Lecture Series for August 19, 2003. Tonight, we welcome Dr. Ken Renney, who joins us from the Houston Orthopaedics Sports Medicine Associations of Houston Texas. His medical team is the only one in the United States trained in France to manage pudendal nerve problems. He is Board Certified in Family Practice, Emergency Medicine and Sports Medicine. His specialty is Sports Medicine. Welcome Dr. Renney:

Dr. Renney - Good evening and thanks for inviting me

Jill O. - Pudendal Nerve Entrapment has become a new topic in the pelvic pain community. Can you tell us how you first got involved?

Dr. Renney - I first became involved when I developed pelvic pain. No one could give me an answer to the problem and suggested that it was all in my head. (Some of those doctors still think I was crazy.) After self-directed research, I discovered I had PNE and eventually went to Nantes, France for surgery. Today, I am markedly improved, I can sit and I have my life back....

Jill O. - Why France???

Dr. Renney - Three years ago, the only surgeon with experience in PNE was in France, so I went to him. After I improved, I took an interested team of physicians to France to learn from the experts (Prof. Robert and his associates) and so that care would be available in the US. Our group follows their protocols. Hopefully we can publish data together in the future for the US medical community.

Jill O. - What are the most common symptoms of PNE?

Dr. Renney - The main symptom is pain with sitting. You feel great in the AM until you sit for coffee, or drive to work. You get better with lying down. The pain is in the distribution of the pudendal nerve....genitalia, perineal or rectal. It can be any combination of these areas depending on the part of the nerve entrapped.

Jill O. - How do patients describe the pain?? Burning?? Pressure?

Dr. Renney - The pain is burning, tingling, sharp, knife like. Sometimes they may have a sensation of a foreign object in the rectum. The pain is hard for people to describe due to the problem being neuropathic. Neuropathic pain is not the same as trauma pain or surgery pain.

Jill O. - Do men versus women have different symptoms?

Dr. Renney - 2/3 of PNE cases are women. We have not found any real difference in symptoms between men and women.

Jill O. - Many of the patients that I've worked with have described those symptoms which is one reason why we find this so confusing. Are there any specific known causes of PNE? In IC, for example, we've had patients develop symptoms after car accidents, having a baby, having some type of abdominal surgery, falling, breaking a leg, and, of course, during periods of very high stress. What types of correlations are you seeing for PNE, if any??

Dr. Renney - The original studies were done in cyclists. The other causes are similar to those you mentioned. You can add chronic constipation to that list.

Jill O. - What is PNE??

Dr. Renney - PNE is entrapment of the nerve either at the Ischial Spine, between the two ligaments or in Alcocks canal where it is covered by fascia. (Female Nerve Diagram & Male Nerve Diagram) A majority of the cases are at the spine. The nerve resembles the violin strings. It is stretched and does not lie flat. When you sit, tension is placed on the nerve and you have pain. This can also happen during a bowel movement. Some people have it with sexual relations.

Jill O. - It's possible then for nerves to be entrapped by muscle?

Dr. Renney - No, the fascia of the muscle at the Alcocks Canal can cause entrapment. The nerve develops "scar" tissue due to repeated trauma. To make it simple, it is stuck and won't move or it is smashed and/or stretched between the ligaments.

Jill O. - So, how is it first diagnosed???

Dr. Renney - The diagnosis is based on the history, the results of the injections and the Pudendal Nerve Motor Latency Test (PNMLT). You need at least two of these for us to feel comfortable with the diagnosis of PNE.

Jill O. - Once a diagnosis is made, what's the treatment option??

Dr. Renney - The treatment is: (1) 3 guided nerve blocks with corticosteroids, (2) use of medications such as neurotin, elavil etc., (3) protection from sitting (4) or the offending factor that causes pain. This can be something as simple as avoiding lifting of bags of groceries or a bike if that causes pain

Jill O. - At what point is surgery an option??

Dr. Renney - This is my opinion as a patient only. If you still have pain after the injections and the medications don't get you to a zero on the VAS (Visual Analog Scale for pain intensity) and you worry about the pain daily, I say have surgery and hope you get improvement because nothing else has helped.

Jill O. - One reason why we invited you to speak is because of a patient named Michael who had been diagnosed with IC. For three years, he tried every IC therapy to no avail. It was during a conversation with me that he actually said that his pain only occurred when sitting. He did wake up feeling fine but as soon as he sat in his car to commute to work he began a cycle of burning pain that lasted through the day. We now believe that he didn't have IC but that he had PNE. He was diagnosed and treated in France.

Dr. Renney - Unfortunately, this is a common story for many of our patients.

Jill O. - If a patient suspects that they have PNE and, like Michael, have doctors who really don't know about it, what would you suggest that they do to get some help??

Dr. Renney - First, you need to make sure that other possible problems are ruled out in the spine and the pelvis. You don't want to be led down the wrong path only thinking of PNE. It is important to have a complete workup in your area. Someone needs to try a guided block and if you get numb in the area of your pain, you have information for PN problems. In other words, the injection should numb up the PN and you should consider this as a possible diagnosis. Remember, PNE is not alone and you can have more than one problem.

------------ AUDIENCE Q&A BEGINS -------------------

Jill O. - Our first question is about the recovery time for surgery. One member asks why it takes so long to recover from PNE surgery when other entrapment surgeries, such as carpal tunnel, don't take so long?

Dr. Renney - We cannot pinpoint any specific factor that will prolong recovery but, in my opinion, the problem of PNE has been present for a long time, much longer than carpal tunnel. The main point is the time to diagnosis. Since the medical community does not recognize or know about the problem, PNE can be present for years before diagnosis.

Jill O. - Another question... Do you still experience pain after you stand up?

Dr. Renney - The pain with standing usually deceases somewhat but may not completely resolve if the intensity level is significant.

Jill O. - Is there a connection between PNE and spinal disorders, such as scoliosis?

Dr. Renney - We have found no connection

Jill O. - How does PNE differ from sacralitis???

Dr. Renney - The main point is the history. You need to ask specific questions and you can discover the difference. We see many patients with this diagnosis that actually had PNE.

Jill O. - How successful are nerve blocks at curing this problem?

Dr. Renney - In France, they say they are able to help 68% of their patients with a nerve block (i.e. the pain decreases 80% on the VAS). So, you have to focus on improvement not cure! We have one patient with complete recovery from injections alone (0 on VAS).

Jill O. - Do you think that physical therapy can help PNE? If so, what type of PT???

Dr. Renney - Yes, because the muscles of the pelvis go into spasms due to the chronic pain. Physical therapy should be directed by someone with interest in the pelvic muscles, not just any physical therapist.

Jill O. - Do patients with PNE have flares and remissions??

Dr. Renney - A good example, a patient goes to Mayo clinic for a week, lays around in a hotel, has tests done, and feels great. The reason, he didn't sit, commute or work. So, yes, it depends on level of activity

Jill O. - Are spinal nerve root blocks the same blocks done to diagnose PNE?

Dr. Renney - CT guided pudendal nerve blocks are done at the level of the spine or canal in the buttocks area. They are not the same as nerve roots are done at the lower spine, a different area and different result.

Jill O. - What kind of doctor should a patient go to be tested??

Dr. Renney - You need to seek out a doctor who is open to suggestions that you have PNE. It could be internist orthopedist, urologist or gynecologist. In my case, it was a radiologist who made my diagnosis.

Jill O. - Can too many nerve blocks cause side effects or long term issues??

Dr. Renney - Yes, we try to avoid more than 4 injections due to the further irritation to the nerve, the addition of scar tissue or reaction to the steroids. Bone problems can result from steroid use but that is usually long term steroid by mouth such as for asthma patients or different medical problems.

Jill O. - Can weightlifting, exercise.. etc. exacerbate PNE?? If so, what should they avoid doing??

Dr. Renney - Yes, don't do anything if it hurts! The only way to diagnose the difference is at surgery.

Jill O. - Is there a precise way of differentiating between PNE and pudendal neuralgia.. and maybe, could you explain what neuralgia is for our audience?

Dr. Renney - You most likely have neuropathy.

Jill O. - One patient says that she has horrible pelvic muscle spasms and has been recommended to do some pelvic floor rehabilitation but she's afraid to do it and is concerned that it will exacerbate her symptoms. Any suggestions???

Dr. Renney - If you have pelvic spasms, whether its from IC or PNE, you need to have this evaluated by a person who knows how to deal with pelvic muscles. Remember, sometimes with PT you get worse before you get better due to the chronic spasms.

Jill O. - Can a severed rectal sphincter contribute to PNE or cause PNE??

Dr. Renney - If the rectal sphincter is injured during childbirth, you probably had a difficult delivery so the pudendal nerve could be stretched or injured. It is not a result of a rectal muscle tear with an episiotomy.

Jill O. - Thank you Dr. Renney for appearing tonight. You have been generous with your tonight and we thank you! Our gratitude to ICN Kathi for setting this lecture up!!!

------------------- Audience Question & Answer Session Ends -------------------

Related Links:
Dr. Ken Renney's Website - http://www.hosma.com/Renney/index.htm
PNE Frequently Asked Questions - http://pn.jcon.org/faq/PudendalFAQ.htm
Pudendal Neuropathy - http://pn.jcon.org

Dr. Renney's Contact Information:
Houston Orthopaedic/Sports Medicine Associates, P.A.
15400 Southwest Frwy, Suite 100
Sugar Land, TX 77478
Phone: 281-565-8800
Fax: 281-565-8808

The necessary disclaimer: Active and informed IC patients understand implicitly that no patient, or website or presentation on a web site should be considered medical advice. We strongly encourage you to discuss your medical care and treatments with a trusted medical care provider. Only your personal provider can and should give you medical advice. The opinions expressed by our speaker may not represent the opinions of the IC Network.

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Reprinted by Jack with permission from Jill O.

According to the home page of the ICN, "Interstitial Cystitis is a bladder and pelvic pain disorder effecting millions of men, women and children throughout the world. With symptoms of frequency, urgency, and/or pain, diagnosis can be elusive. Patients are often misdiagnosed with Urinary Tract Infection [and other conditions].The good news is that many new therapies and self-help strategies are now available."

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