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I wrote this as a post on a forum for interstitial cystitis patients at!
Hi IC friends and PNE friends,
Just wanted to apologize for my lapse in blogging. My last entry was about having surgery on Halloween — but I ended up NOT having the surgery because my pre-op nerve blocks failed — which meant the surgery probably would not have helped, and so we cancelled.
It has taken me some time to come to terms with my situation and find my path again. I was SO hopeful that surgery would “fix” my damaged pelvic nerves and my body would heal (including my bladder) But it was not to be, possibly because so many years have gone by – 16 years – while my pain grew worse and worse. Now I am learning how pain itself can become a disease, and take over communications between the central nervous system and the brain. Even if the original cause of the pain is corrected, the “pain grooves” can be worn so deep that they are there to stay.

That’s what I have been trying to wrap my brain around — and to accept. Maybe I can’t be “fixed.” Maybe the next stage is more about treating the pain. My surgeon, Dr. D, suggested that I try neuromodulation of my sacral nerves. I asked him if he meant the “Interstim” which we all know is NOT for pain, my main problem. He was not familiar with it, so I knew i would have to do my own homework — I found out that there are stimulators OTHER than the Interstim that can be used off-label for pelvic pain. (Read Amanda’s story at ).I also found Dr. Joshua Prager, one of the world’s foremost authorities on chronic pain syndromes and treatments. And I have an appointment with him THIS Monday, Dec. 19. It wasn’t as easy as calling and making an appointment — I had to get a referral from my surgeon, along with some medical history and records for him to review. But I got in.Dr. Prager is director of the Center for Rehabilitation of Pain Syndromes (CRPS) at UCLA and also established California Pain Medicine Centers – at I have found many articles and videos of Dr. Prager, especially his work with CRPS, Complex Regional Pain Syndromes. He is president of the North American Neuromodulation Society, and has participated in numerous studies related to spinal cord stimulation. So that may be one of my options. Another option is a pain pump, implanted at the site of the pain, so that only a small amount of pain medication has to be used, compared to the amounts we have to take orally.

One possible option that I am very interested in, and curious about, is the use of ketamine for severe chronic pain. I just found out from one of my friends with pudendal nerve entrapment and bladder pain that she has been officially diagnosed with CRPS and will be undergoing ketamine transfusions. Without going into the pharmacology of ketamine, I will just describe in layman’s terms what it does: it can “reset” the brain and central nervous system back to a normal state — so that the pain is no longer there when the patient wakes up! Sounds like a miracle, doesn’t it? Well, there are many variables and a wide range of protocols — from a one-time trial infusion for a few hours to being put into a “ketamine coma” for 5 days for the most severe cases. (The comas are only done in Mexico and Germany at this time because of the risks involved.)

So — I have no idea whether I am a candidate for any of these treatments or some other treatment. i only know that SOMETHING has to change, as i’m bedridden, can only stand for 15-20 minutes at a time, cannot sit or walk. It feels like I am losing myself, piece by piece, while I’m being swallowed by pain.So as you can imagine, while I dread the pain of traveling and getting in a wheelchair, I’m very eager to meet Dr. Prager and finding out what he recommends.I will update as soon as I know more!




1995 – Original symptoms: urethral pain and knife-like pain to the left of vulva. Dx’d with “urethral syndrome” and treated with metal rods to enlarge urethra. (outdated, barbaric procedure!)
1997- Dx’d with IC (positive potassium test) by Dr. Lowell Parsons. Tried all “usual” IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations, no improvement.
2000- First hydrodistention by Dr. Daniel Curhan, Cottage Hospital, Santa Barbara, revealed classic IC glomerulations & mast cells.
2005 – 2nd hydrodistention by Dr. Christopher Payne at Stanford University; dx’d with “refractory” Interstitial Cystitis.
2006 – Dx’d with left-sided pudendal neuralgia by Dr. Jerome Weiss, had two unsuccessful nerve blocks (unguided).
2008 – Tried botox, nerve blocks (vaginally) and physical therapy with Dr. Felicia Lane and PT Julie Sarton of UCI Medical Center.
2010 – PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner of Phoenix, AZ.
2011- PNE surgery by Dr. A. Lee Dellon, frontal approach, to decompress pudendal nerve at front (anterior) of Alcock’s Canal. Perineal branches of nerve (which goes to urethra and base of bladder) had significant damage and were excised as needed.
My PNE surgeons believe my IC may have been caused by damage to the nerves that innervate the urethra and bladder, and we hoped that healing of the nerves would also heal the bladder. Unfortunately, neither of my surgeries helped my pain.

One response to “Back to the Blog

  1. Hi could you please e. mail me on I am so confused on what site I should go on . I have had ic for 14 years and I have now been diagnosed with PN. I live in houston Texas . I desperately want to meet people with the same condition . I just don’t know how to do this. Helen

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