Dr. Hibner in Pudendal Decompression Surgery

If you know anything about Pudendal Neuralgia (you don’t) it’s that one of the major names for my disorder is Dr. Michael Hibner who is out of Phoenix, Arizona. If you are talking about PN experts in the United States that is. In terms of studies, experience with procedures, years in practice, research, lecture ect. Sure there are others. Dr. Conway who is in New Hampshire, there is a dr in New Jersey I think. One in Seattle, One in Houston, a few in California. There are pelvic pain centers popping up here and there. Illinois has next to nothing unless you want to do blocks and botox which is definitely a good place to start and stay if you do get relief. I have known about this guy for years on end but I never figured in a million years that I would be serious enough to see him. Everyone on my pelvic pain groups has talked about him. Or at least know OF him. Most people understandably so… do not want to travel. They think that care for a disorder that most gynecologists and urogynos have only heard of very little in medical school (unless they specialize in pelvic pain)…. Much less have anywhere to advise people on treatments………. That help will be in their back door. Try again. It took me a good 6 years. 500 pages of medical/ physical therapy records faxed. Waited for 3 months playing phone tag. But on November 4th, I walked my happy ass on that plane.. By myself. To Phoenix.

I don’t ever happy cry. Except when I am alone on the plane and I am taking off. Because I truly feel like this is mine, and no one elses. To get away, to escape. Even flying back into Chicago I have both miserable and content feelings. This is the only something for me, that I feel complete freedom. This time I was not visiting anyone. And the pain was worstening. I attributed it to my botox injections wearing off and muscle spasms were prevalent (and still are) and apparently I have a left sided ovarian cyst. Which is a useless finding, because apparently they are very common. But I have been imaged many times and they never have ever appeared. And anything in that region that changes anything has the capability to fuck up my body.

I stayed in a hotel by myself. I ubered everywhere. The pain episodes are now urethral burning pain that is the most prevalent. It is worse after I pee if I have eaten a meal that day. If I starve myself I am less likely to feel anything. This type of pain isnt completely new for me. The first time I remember feeling pelvic pain, this is what it would feel like. The episodes were post voiding and then as I got older they got less intense. And they were episodic. Now, it could go on for hours or all day. Last time I had a cluster of these episodes are AROUND the time when my gallbladder came out. I forget if it was beforehand or after it came out. But I remember going to my dr that prescribed some strong bladder medication that would only coat the inside of my bladder. Helped a little but that is when I realized this was a mechanical issue with my urethral sphincter which is exactly part of what the PN innervates. So I was all alone in Arizona having these urethral episodes. I wasn’t sure if I was going to be able to even make it to the dr’s office. First I met with one of his other team members in the pelvic pain dept. Then I had a physical therapy session. Then I met the Dr. I have never seen a more beautiful view outside of a dr’s office in my life.

So it felt like 3 hours before I was able to see Dr. Hibner. I liked his PT. But she was basically like yes your pelvic floor is tight blah blah. Yeah everyone with PN has tight pelvic floor. My PT’s keep telling me I have okay tone. She was basically like the decision is yours. I have had people do botox more than once and had success the more they tried. But with the flare up I have been having.. Its worse than when a nerve block wears off. I had seen Dr. Hibner in the hallway and nearly fainted when they were checking me in. Idk hes basically like a celebrity to me. His partner talked about different medications I had already considered going on but didn’t feel like running all over to different doctors to try and obtain it. I can barely get the suppositories I have now. Briefly mentioned options for spinal cord stimulators that I can do down the road. But I am tired. Soo back to me waiting for Dr. Hibner. My urethra was on fire because I had just done PT. I probably waited like 30 mins for him but it seemed like 3 hours. I noticed some art on the wall that looked like it was signed by him. He came in and introduced himself. I got the encounter recorded, but I missed the first ten minutes of it. He says that whatever is comfortable for me stand, sit, lay, whatever. He says that he just wanted to let me know he got up early that morning because he remembered the timeline and write up of my symptoms and stuff I have done, and he wanted to re-read it. He says while he doesn’t suffer with this nerve issue he has met and treated and dedicated over half his career to treating, and speaking to so so many people from all over the world suffering from this and he has seen so much suffering and destruction. He doesn’t have PN but he was in a motorcycle accident and he insisted he get brought to this hospital. And the nerve pain he had in his back he described as horiffic. SO he can only imagine the type of pain this is. And in while reading my novel of a write up, he says he knows EVERY SINGLE physician I have seen in IL. And I have seen the best of the best people I possibly could see. He met one of my Dr’s and actually worked with one of them I used to have but moved to California. But he knows every single other name. And I did the best I could with where I am at. He also says he is in a relationship with a physician at University of Chicago medicine, which was the first facility I went to for this issue. (They incorrectly diagnosed me but they were close/ maybe got part of it). He goes back and forth to Chicago twice a month. He feels helpless because he hears about people in IL suffering but he can’t treat them.

IDK if he ALSO has education on public speaking and selling himself. But that was a pretty good speech. It had me in tears. So I know he wins the hearts of a lot of people, clearly. But putting my trust in one person let alone one doctor… is next to impossible for me. Especially when so so so many of them left me nothing or worse.

Then he goes on to talk about the MRI I had the previous day. Come to think about it I still cant believe I did all that alone. But Ive done things here alone. But the added urethral pain did make it very challenging. My MRI didn’t show anything when it comes to the pudendal nerve but he explained MRI’s don’t show nerves. The nerve is too small to image. I do understand that. He didn’t have much to say about my spinal birth defect but I did mention it. He then asked me at one point if I have had medical training because of how I was speaking to him. I said no but when your life slips out of your hands you spend hours in front of a computer screen reading and researching and you have seen over 20 specialists, that’s what happens. I sound educated I guess. He went to explain surgery to me which I understand because I have read almost every article he has written about how he performs the surgery. The recovery time is like 4 months to when people start to notice improvement. And aren’t fully recovered for 18. 60-70% of people notice at least a 20% improvement in their pain. Of those people at least feel 50% or more improved and 20-30% feel completely cured. Those are still not great status but not everyone qualifies for surgery.

I qualify for surgery based on the following criteria:
1) One sided pain
2) Pain worse after sitting & going to the bathroom
3) Positive nerve blocks

I asked him about botox. He said I could try it again but since I didnt get any relief from it even before it wore off and now I am worse, he wouldn’t personally try it again on me. Which is exactly what 2 other dr’s of mine said. IDK ive spoken with some people who have gotten turned down for surgery. I just read so many bad things about surgery. It’s really a shot in the dark. The stats arent good. I can’t recover in my house because of the stairs, the situation w my husband and my ex gf. It’s just not good here not sure if it ever will be. My boyfriend wants me to recover at his place. I get why but it seems like a nail in the coffin with me and B. I’m not sure if I care anymore. I don’t know what the right answer is. I am still on the fence. They want me to get a CT guided nerve block at their hospital first before I do surgery. I cant say I disagree. I am going to get my small intestines imaged on Dec 13th. I didn’t know that was possible, but apparently it is. It’s a 4 hour procedure. Something tells me there is still something missing. I know there is. Especially since now the pain is changing up and it seems to revolve around food. But I never had bad digestive issues until AFTER the nerve issue. I just don’t know. I feel like if this surgery doesn’t work that will be it for me, I will have to accept being bedridden. So I am prolonging that as long as I can.

Last updated March 21, 2020