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Jan 7 07 1:13 AM

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I am currently going through the diagnostic phase of Pudendal Nerve Entrapment or PNE/PN for short. It's not fun and I am tried of being sick but they are trying to figure out why I am still feeling the old urethral area. They feel that this is a strong lead and may have been going on for the whole 9 years plus IC. I am currently being diagnosed here in the US to rule in or out PNE/PN. It is being done by an OBGYN and Chronic Pelvic Pain Specialsts. My Radiologist who is doing the CT Guided Nerve Blocks that they use to diagnose PNE/PN is also a Neurologist. Another OBGYN that is seeing me was the one to create the first comprehensive pudendal neuralgia treatment center in the country, offering conservative therapies, medication management, EMG studies, a surgical solution to treat pudendal nerve entrapment as well as comprehensive post-operative care.

My symtpoms are severe urethral urgency upon sitting. Laying down makes it feel a little better. I have not responded to hundreds of medications for conventional treatment for PNE/PN. It feels like there is a large cold metal foley catheter in there 24 hours a day, 7 days a week. I responded favorably to the first diagnostic Pudendal Nerve Block. I got 12 hours of relief and they said that this was a good sign. I have a 2nd Pudendal Nerve Block next week. Eventually I will be going to have the EMG test which gives a better indication if it is PNE/PN or something else. I will have a total in the end of 5 Diagnostic Nerve Blocks. There are not meant to offer long term pain relief, just to try and pin point a diagnosis.

If I do have PNE/PN and it is not related to muscles. Becaue I have already tried every medication that is availabe for this condition and these medications have failed. They will be doing TIR surgery on me eventually to release the nerve.

"Pudendal Neuralgia is a painful neuropathic condition that is caused by inflammation of the pudendal nerve. Triggers for the sensitivity include trauma secondary to childbirth, surgery, cycling, squatting exercises, bio-mechanical abnormalities (e.g., sacro-iliac joint dysfunction, pelvic floor dysfunction), chronic constipation, repetitive vaginal infections and direct falls on the tailbone. Pudendal neuralgia is known in some circles as ‘cyclist’s syndrome’, ‘pudendal canal syndrome’ or ‘Alcock’s syndrome.’

Primary symptoms of Pudendal Neuralgia include:

· Pelvic pain with sitting that may be less intense in the morning and increase throughout the day. Symptoms may decrease when standing or lying down. The pain can be perineal, rectal or in the clitoral / penile area; it can be unilateral or bilateral.

· Sexual dysfunction. In women, dysfunction manifests as pain or decreased sensation in the genitals, perineum or rectum. Pain may occur with or without touch. It may be difficult or impossible for the woman to achieve orgasm. In men, dysfunction presents as pain during erection, difficulty sustaining an erection or painful ejaculation.

· Difficulty with urination / defecation. Patients may experience urinary hesitancy, urgency and/or frequency. Post-void discomfort is not uncommon. Patients may feel that they have to ‘strain’ to have a bowel movement and the movement may be painful and/or result in pelvic pain after. Constipation is also common among patients with pudendal neuralgia. In severe cases, complete or partial urinary and/or fecal incontinence may result.

· Sensation of a foreign object being within the body. Some patients will feel as though there is a foreign object sitting inside the vagina or the rectum.

It is important to note PN is largely a “rule out” condition. In other words, because its symptoms can be indicative of another problem, extensive testing is required to ensure that your symptoms are not related to another condition. Common conditions that should be evaluated include coccygodynia, piriformis syndrome, interstitial cystitis, chronic or non-bacterial prostatitis, prostatodynia, vulvodynia, vestibulitis, chronic pelvic pain syndrome, proctalgia, anorectal neuralgia, pelvic contracture syndrome/pelvic congestion, proctalgia fugax or levator ani syndrome.

In addition to eliminating other diagnoses, it is important to determine if the pudendal neuralgia is caused by a true entrapment or other compression / tension dysfunctions. In almost all cases, pelvic floor dysfunction accompanies pudendal neuralgia. Electrodiagnostic studies will help the practitioner determine if the symptoms are caused by a true nerve entrapment or by muscular problems and neural irritation. It is crucial to a successful treatment outcome to acknowledge both dysfunctions and treat accordingly. In the event of a true entrapment, surgical decompression followed by post-operative physical therapy will be necessary to restore patient health. In cases of pudendal neuralgia, pudendal nerve blocks and physical therapy can alleviate the symptoms and resolve the original problem."

My team of Doctors wrote this article together.

Kara



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If you would like to see what my life is like after having a Urethrectomy and Bladder Reconstruction please click http://icnkaralynn.blogspot.com/photos included!


Here is a link to my First Bladder Removal Storyhttp://www.ic-network.com/patientstories/kara.html

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Jan 7 07 8:18 PM

Kara, ((((((((((hugs))))))))) Thank you for sharing what is going on with youu. I have been sooo worried about you. Are you gaining any weight?

Prayers with you, JOY

ICandme Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to see your doctor.


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Jan 8 07 5:18 PM

That is good to hear. I will send you as much as you want......REALLY no kidding. icandme/laugh emotion 5.jpg


JOY

ICandme Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to see your doctor.


THERE ARE NO IC SISSIES

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