Time for an update!

How am I doing?


A friend of mine wrote to me asking if I was still doing well with the pump, and if I would be willing to talk to another person who was suffering terribly with PNE and pelvic pain..

I immediately wrote back that, YES, I was still doing GREAT, and that of course I would talk to his friend. Helping others find relief is something I care deeply about. I will never forget the times I was literally shaking in pain, and the three years I spent in bed, unable to walk further than the bathroom.

I am happy to talk about my pump: how it works, what it feels like, etc. However, I don’t recommend the pump itself as an answer. There are many doctors surgically placing pumps for back pain, for example, but the average morphine pump for back pain does not work for us. I have friends who have undergone trials for pain pumps that failed terribly because the doctor was not familiar with our type of pain. Pelvic pain patients (specifically PNE and IC) are suffering from nerve pain, which requires different medications and sometimes, a bit of “out of the box” thinking.

The advice I give people is to consult my doctor, Dr. Joshua Prager, who is in Los Angeles – UCLA specifically. This is immediately discouraging to people who do not live within a few hours drive (I’m 3 hours away). But Dr. Prager still recommends that people who live far away call his office. And he does return calls! I believe he sincerely wants to help, plus he likes the challenge of fighting CRPS. He has contacts around the country, and has been able to refer people to competent pain management specialists in their area.
It’s not easy to find a doctor like Dr. Prager because the type of pain management he provides is not the usual thing…. CRPS (Chronic Regional Pain Syndrome) is his specialty. He explained how my brain and central nervous system were involved and that I have developed  centralized pain. That’s what he believes has happened to many pelvic pain patients, and with people with IC as well. There are videos on his website that explain CRPS.

The medication in my pump is 1/300 of the amount I would have to take orally for the same relief. Without the fuzziness. The main ingredient in my pump is bupivacaine, an anesthetic, which numbs my bladder and pudendal nerve area. It can’t get every bit of it, but it is effective. I am living life again!!!


After typing all this up for my friend, I thought it would make a good update to my blog!  So here it is. I’m still here, and doing GREAT!!!


2 responses to “Time for an update!

  1. Hi there, thanks for the great blog. Just found it today. I also had a failed PN surgery with Dr. Dellon. I was wondering if you could email me directly. Thanks,

  2. Julie, Yes I would be happy to email you directly. You can either give me your email here, or privately at http://www.pudendalhope.com. This is a supportive website for people suffering from pudendal nerve entrapment and similar pelvic pain problems. Once you have joined and are logged in to the site, you can send me a private message. My “handle” on the site is LottaNerve. If you send a private message to me there I will be able to give you my email!

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