icnmgrjill
07-07-2008, 01:43 PM
(Reprint from Jan 2003)
2002 was a busy year in the ICN offices with thousands of phone calls from patients who were struggling with symptoms. One patient in particular stands out. I'll call him Jeff. He's a young, vibrant professional in his 30's whose life was at a stand still due to pain. No matter what he tried, his symptoms were excruciating but they were also unusual. He didn't flare with diet at all. When he woke in the morning, he felt quite good but within 30 minutes of getting up, the pain and discomfort would continue.
Now Jeff is a dedicated patient. He tried nearly everything suggested by his doctors, who were very informed and up to date on IC. He scoured the internet for information and followed virtually every treatment pathway that he could find, from traditional therapies to alternatives. Nothing seemed to work.
Let me just remind you all. Try to go back to the beginning and keep a written record of your symptoms and treatments. It may be that one simple event might put it all together for you and your doctor. Keep a voiding diary and write down patterns that you might observe with your symptoms. Are they worse at night?? or during the day?? Do any specific activities make them worse???
In Jeff's case, his symptoms were the worst when he was sitting. In fact, they occurred only when he was sitting. That, together with the fact that his bladder didn't behave like an IC bladder (i.e. respond to acid or salty foods, alcohol) and that no therapies offered relief, opened the door to the possibility that he may have a Pudendal Nerve Entrapment (PNE) instead. Why? His symptoms are positional.. They are worse when he is sitting or driving. They disappear when he is laying down or standing. Jeff dove into the information and found that he had all the symptoms of PNE. His urologist now considers this a strong possibility. So, let's take a closer look at this condition which could, for some of you, be a source of your pain and discomfort.
Pudendal Nerve Entrapment (PNE) is a rare condition that causes pain for no apparent reason in the lower central pelvic areas, including the anus, perineum, scrotum and/or vulva. The classic symptom of PNE is pain upon sitting, that is relieved or less when standing or sitting on a donut cushion or toilet seat. Pain can be in just one area, several, or all. It can be one sided or on both sides. It has been described as stinging, burning, stabbing, aching, knife-like, irritation, cramping, spasm, tightness, crawling on the skin, twisting, pins and needles, numbness, and hyper sensitivity. It can also feel as if something is inside the rectum or vagina. Obviously it becomes difficult for patients to do activities which require sitting.
PNE is caused by entrapment (constriction, rubbing, stretching) of the pudendal nerve at various places along the nerve. The nerve then responds with irritation, inflammation, scarring, and/or thickening. Ultimately, the nerve may not function properly and cause a wide variety of problems including difficulty with urination, constipation and even sexual problems. PNE is usually precipitated by prolonged sitting or trauma to the sitting area, combined with a genetic and developmental susceptibility. PNE is so common in long distance bicyclists that it's nicknamed Cyclist's Syndrome. The prolonged sitting pressure, the continual nerve rubbing and stretching from pedal pumping, and the extremely high seat pressure form the ideal conditions for PNE.
PNE is diagnosed by presence of the classic symptoms and the exclusion of other factors like disease or injury. The final criteria is the use of nerve blocks, which are also effective at curing the condition in roughly two thirds of the patients with PNE. Unfortunately, the longer the pudendal nerve is irritated, the less likely steroid injections will cure the condition. Surgery can then be performed to release the nerve.
If you do feel that PNE can be a contributing factor for you, there are several resources, message boards & mailing lists available on the internet that will help you learn more about the condition and locate the few specialists available in the world. Most importantly, PNE sufferers recommend that you minimize your sitting time... and, when you do sit, use a cushion with a center cutout. You can also tilt your seat angle forward or lean forward which then puts more weight on your thighs and off your crotch.
2002 was a busy year in the ICN offices with thousands of phone calls from patients who were struggling with symptoms. One patient in particular stands out. I'll call him Jeff. He's a young, vibrant professional in his 30's whose life was at a stand still due to pain. No matter what he tried, his symptoms were excruciating but they were also unusual. He didn't flare with diet at all. When he woke in the morning, he felt quite good but within 30 minutes of getting up, the pain and discomfort would continue.
Now Jeff is a dedicated patient. He tried nearly everything suggested by his doctors, who were very informed and up to date on IC. He scoured the internet for information and followed virtually every treatment pathway that he could find, from traditional therapies to alternatives. Nothing seemed to work.
Let me just remind you all. Try to go back to the beginning and keep a written record of your symptoms and treatments. It may be that one simple event might put it all together for you and your doctor. Keep a voiding diary and write down patterns that you might observe with your symptoms. Are they worse at night?? or during the day?? Do any specific activities make them worse???
In Jeff's case, his symptoms were the worst when he was sitting. In fact, they occurred only when he was sitting. That, together with the fact that his bladder didn't behave like an IC bladder (i.e. respond to acid or salty foods, alcohol) and that no therapies offered relief, opened the door to the possibility that he may have a Pudendal Nerve Entrapment (PNE) instead. Why? His symptoms are positional.. They are worse when he is sitting or driving. They disappear when he is laying down or standing. Jeff dove into the information and found that he had all the symptoms of PNE. His urologist now considers this a strong possibility. So, let's take a closer look at this condition which could, for some of you, be a source of your pain and discomfort.
Pudendal Nerve Entrapment (PNE) is a rare condition that causes pain for no apparent reason in the lower central pelvic areas, including the anus, perineum, scrotum and/or vulva. The classic symptom of PNE is pain upon sitting, that is relieved or less when standing or sitting on a donut cushion or toilet seat. Pain can be in just one area, several, or all. It can be one sided or on both sides. It has been described as stinging, burning, stabbing, aching, knife-like, irritation, cramping, spasm, tightness, crawling on the skin, twisting, pins and needles, numbness, and hyper sensitivity. It can also feel as if something is inside the rectum or vagina. Obviously it becomes difficult for patients to do activities which require sitting.
PNE is caused by entrapment (constriction, rubbing, stretching) of the pudendal nerve at various places along the nerve. The nerve then responds with irritation, inflammation, scarring, and/or thickening. Ultimately, the nerve may not function properly and cause a wide variety of problems including difficulty with urination, constipation and even sexual problems. PNE is usually precipitated by prolonged sitting or trauma to the sitting area, combined with a genetic and developmental susceptibility. PNE is so common in long distance bicyclists that it's nicknamed Cyclist's Syndrome. The prolonged sitting pressure, the continual nerve rubbing and stretching from pedal pumping, and the extremely high seat pressure form the ideal conditions for PNE.
PNE is diagnosed by presence of the classic symptoms and the exclusion of other factors like disease or injury. The final criteria is the use of nerve blocks, which are also effective at curing the condition in roughly two thirds of the patients with PNE. Unfortunately, the longer the pudendal nerve is irritated, the less likely steroid injections will cure the condition. Surgery can then be performed to release the nerve.
If you do feel that PNE can be a contributing factor for you, there are several resources, message boards & mailing lists available on the internet that will help you learn more about the condition and locate the few specialists available in the world. Most importantly, PNE sufferers recommend that you minimize your sitting time... and, when you do sit, use a cushion with a center cutout. You can also tilt your seat angle forward or lean forward which then puts more weight on your thighs and off your crotch.