Long Introduction
Posted: Wed Jun 25, 2014 11:25 pm
HI all,
I'm new to the forum (though not to pudendal neuralgia, unfortunately) and thought I'd introduce myself. My name is Laura, and I live in the SF bay area. I work as a software engineer at a big internet company you've all heard of. Or I work there when I'm not on medical leave, anyway. There's nothing else too interesting about me. I have a new house I'm still working on decorating, and I have four cats -- in danger of becoming a crazy cat lady. I used to enjoy jogging and cycling, but the pudendal nerve issues have ruled both of those out. In my time off from work I've been trying to learn to play the guitar, though I'm pretty bad at it so far.
I've been dealing with pudendal neuralgia, or something that mimics it, for about a year and a half. It started as pain in my groin that was mostly correlated with any sort of internal pressure -- gas or whatever -- and with sitting. It gradually built to the point where it was sometimes very difficult to sit. I ended up having to go on medical leave from work last summer. (Fortunately my employer has good disability insurance and my managers have been very supportive.) Now, 18 months later, I've been though a large collection of doctors and physical therapists and have gotten some relief, and I'm back to work a few hours a day. I'm still struggling with the pain and the emotional aspects of the whole thing, though.
In some ways I've been lucky. After reading lots of posts here, I don't think the pain is quite as bad for me as it is for some of you. And I have periods when it doesn't hurt much -- it's extremely variable, often for no apparent reason. I'm also blessed with a very high pain tolerance so it's a bit easier for me to cope with the whole thing sometimes. (That's not always a blessing, though; there have been a few incidents like the kidney one I describe below where I would have been better off panicking earlier instead of saying "It doesn't hurt that bad".)
I've finally ended up with a good doctor for this: Michael Hibner down in Phoenix. I saw him for the first time in early May (after waiting 3 months for the appointment), and he did some botox injections into my obturator internus and levator ani muscles three weeks ago. Right now I'm in limbo waiting to see if that will help. The frustration and uncertainty are worse than the pain sometimes. I just want it to be over with.
If anyone is interested in the whole story, and for the benefit of anyone who comes along later and has similar issues, here's the whole saga....
A couple of years ago I had two large kidney stones. I made the mistake of going to the urologist that the urgent care place recommended (part of the same medical group), and when he smashed the stones with shock wave lithotripsy he also smashed my kidney and caused a big subcapsular hematoma in my left kidney. Kidney pain is the absolute worst pain ever. I was looking around the ER for things I could use to kill myself at one point. They had to hospitalize me just for pain control, even with my high pain tolerance.
As the pain from that was going away, some groin / pelvic pain ramped up. The original urologist didn't take it seriously, and I'm pretty sure he thought I was just drug seeking. (I think he's basically an a*hole. Other doctors have even told me that, even though they're usually reluctant to bad-mouth each other.) I found another urologist a few months later when it got worse, and he discovered a couple more kidney stones. He took them out even though he said they probably weren't the cause of the pain, and when that didn't help he decided it was probably the pudendal nerve and sent me to a pelvic PT. I also started seeing a neurologist who I'd seen in the past for back pain. And I stopped working, since most of the time I was either in too much pain or too stoned on painkillers to get anything done.
That first PT didn't help much and eventually my first neurologist (who was trying to help even though he had to dig out his anatomy book to see where the pudendal nerve was) sent me to a local pelvic surgeon. That guy decided it was definitely the pudendal nerve and did an injection of marcaine, medrol, and alcohol to try to block and numb the nerve. It helped a bit, probably from the medrol (a steroid). In hindsight, I think he missed the actual nerve because he didn't use any sort of imaging guidance, so the steroids eventually seeped over to the nerve but the marcaine and alcohol didn't do much.
The one good thing that doctor did was send me to another PT practice that specializes in pelvic issues. (PHRC, the one run by Stephanie Pendergrast and a few others. I'm seeing Malinda, one of their newer PTs.) They've been working on me since December or so. My pelvic floor muscles, especially the obturator internus, are spasming and extremely tight. Our working theory is that the pain from the kidney hematoma caused the whole left side of my body to clench up, which caused the pudendal nerve to hurt, starting a vicious cycle that hasn't stopped yet.
I also started seeing a new local neurologist (after the first one had a stroke, which is very sad). He's tried me on various neuropathic pain drugs: gabapentin, trileptal, and cymbalta. None have helped, and the side effects from the first two were very annoying. I've stayed on the cymbalta because it seems to help with my depression a bit. I'd been depressed in the past but finally stopped the drugs and therapy a couple of years ago. But this whole nerve issue has made me depressed again due to all the frustration, pain, and uncertainty, and I was in pretty bad shape last winter before I started the cymbalta.
It's hard to tell whether the PT is helping. Probably a bit, because in April I decided things had improved enough to try going back to work part time. I'm working 15 hours a week, though I'm not getting a huge amount done because I'm still on painkillers a lot and it's hard to write computer code when my brain is fuzzy. One thing my PT has definitely helped with is referring me to the right doctor, finally. Way back in February I scheduled an appointment with Dr. Hibner, and I finally got to see him in May. He and his assistants decided it was probably my pudendal nerve, and we scheduled some botox injections. That happened a few weeks ago.
It's too soon to tell whether the botox is helping. Apparently if the pain is caused by pelvic floor spasms mimicing pudendal neuralgia, the botox is likely to help. If the pain is from the nerve itself, then the botox is less likely to help. And if it's caused by my obturator internus muscle squeezing the pudendal nerve, then it's somewhere in between. There have been a few days in the last week where I felt a bit better and needed fewer painkillers. But this past weekend was completely awful, with a big flare up for no apparent reason, so it's definitely not cured yet. Sigh. I hate being in limbo like this. Hopefully I'll know the answer soon and can figure out what the next step is. I just want this to be over with.
My PT also referred me to a good pain doctor locally, who is prescribing painkillers and did one nerve block to help out with the diagnosis. She's also planning to fly down to Phoenix to learn how to do the botox injections from Dr. Hibner. Hopefully if I need another round of injections I can get them done here.
Thanks for reading this far, if you did!
Laura
I'm new to the forum (though not to pudendal neuralgia, unfortunately) and thought I'd introduce myself. My name is Laura, and I live in the SF bay area. I work as a software engineer at a big internet company you've all heard of. Or I work there when I'm not on medical leave, anyway. There's nothing else too interesting about me. I have a new house I'm still working on decorating, and I have four cats -- in danger of becoming a crazy cat lady. I used to enjoy jogging and cycling, but the pudendal nerve issues have ruled both of those out. In my time off from work I've been trying to learn to play the guitar, though I'm pretty bad at it so far.
I've been dealing with pudendal neuralgia, or something that mimics it, for about a year and a half. It started as pain in my groin that was mostly correlated with any sort of internal pressure -- gas or whatever -- and with sitting. It gradually built to the point where it was sometimes very difficult to sit. I ended up having to go on medical leave from work last summer. (Fortunately my employer has good disability insurance and my managers have been very supportive.) Now, 18 months later, I've been though a large collection of doctors and physical therapists and have gotten some relief, and I'm back to work a few hours a day. I'm still struggling with the pain and the emotional aspects of the whole thing, though.
In some ways I've been lucky. After reading lots of posts here, I don't think the pain is quite as bad for me as it is for some of you. And I have periods when it doesn't hurt much -- it's extremely variable, often for no apparent reason. I'm also blessed with a very high pain tolerance so it's a bit easier for me to cope with the whole thing sometimes. (That's not always a blessing, though; there have been a few incidents like the kidney one I describe below where I would have been better off panicking earlier instead of saying "It doesn't hurt that bad".)
I've finally ended up with a good doctor for this: Michael Hibner down in Phoenix. I saw him for the first time in early May (after waiting 3 months for the appointment), and he did some botox injections into my obturator internus and levator ani muscles three weeks ago. Right now I'm in limbo waiting to see if that will help. The frustration and uncertainty are worse than the pain sometimes. I just want it to be over with.
If anyone is interested in the whole story, and for the benefit of anyone who comes along later and has similar issues, here's the whole saga....
A couple of years ago I had two large kidney stones. I made the mistake of going to the urologist that the urgent care place recommended (part of the same medical group), and when he smashed the stones with shock wave lithotripsy he also smashed my kidney and caused a big subcapsular hematoma in my left kidney. Kidney pain is the absolute worst pain ever. I was looking around the ER for things I could use to kill myself at one point. They had to hospitalize me just for pain control, even with my high pain tolerance.
As the pain from that was going away, some groin / pelvic pain ramped up. The original urologist didn't take it seriously, and I'm pretty sure he thought I was just drug seeking. (I think he's basically an a*hole. Other doctors have even told me that, even though they're usually reluctant to bad-mouth each other.) I found another urologist a few months later when it got worse, and he discovered a couple more kidney stones. He took them out even though he said they probably weren't the cause of the pain, and when that didn't help he decided it was probably the pudendal nerve and sent me to a pelvic PT. I also started seeing a neurologist who I'd seen in the past for back pain. And I stopped working, since most of the time I was either in too much pain or too stoned on painkillers to get anything done.
That first PT didn't help much and eventually my first neurologist (who was trying to help even though he had to dig out his anatomy book to see where the pudendal nerve was) sent me to a local pelvic surgeon. That guy decided it was definitely the pudendal nerve and did an injection of marcaine, medrol, and alcohol to try to block and numb the nerve. It helped a bit, probably from the medrol (a steroid). In hindsight, I think he missed the actual nerve because he didn't use any sort of imaging guidance, so the steroids eventually seeped over to the nerve but the marcaine and alcohol didn't do much.
The one good thing that doctor did was send me to another PT practice that specializes in pelvic issues. (PHRC, the one run by Stephanie Pendergrast and a few others. I'm seeing Malinda, one of their newer PTs.) They've been working on me since December or so. My pelvic floor muscles, especially the obturator internus, are spasming and extremely tight. Our working theory is that the pain from the kidney hematoma caused the whole left side of my body to clench up, which caused the pudendal nerve to hurt, starting a vicious cycle that hasn't stopped yet.
I also started seeing a new local neurologist (after the first one had a stroke, which is very sad). He's tried me on various neuropathic pain drugs: gabapentin, trileptal, and cymbalta. None have helped, and the side effects from the first two were very annoying. I've stayed on the cymbalta because it seems to help with my depression a bit. I'd been depressed in the past but finally stopped the drugs and therapy a couple of years ago. But this whole nerve issue has made me depressed again due to all the frustration, pain, and uncertainty, and I was in pretty bad shape last winter before I started the cymbalta.
It's hard to tell whether the PT is helping. Probably a bit, because in April I decided things had improved enough to try going back to work part time. I'm working 15 hours a week, though I'm not getting a huge amount done because I'm still on painkillers a lot and it's hard to write computer code when my brain is fuzzy. One thing my PT has definitely helped with is referring me to the right doctor, finally. Way back in February I scheduled an appointment with Dr. Hibner, and I finally got to see him in May. He and his assistants decided it was probably my pudendal nerve, and we scheduled some botox injections. That happened a few weeks ago.
It's too soon to tell whether the botox is helping. Apparently if the pain is caused by pelvic floor spasms mimicing pudendal neuralgia, the botox is likely to help. If the pain is from the nerve itself, then the botox is less likely to help. And if it's caused by my obturator internus muscle squeezing the pudendal nerve, then it's somewhere in between. There have been a few days in the last week where I felt a bit better and needed fewer painkillers. But this past weekend was completely awful, with a big flare up for no apparent reason, so it's definitely not cured yet. Sigh. I hate being in limbo like this. Hopefully I'll know the answer soon and can figure out what the next step is. I just want this to be over with.
My PT also referred me to a good pain doctor locally, who is prescribing painkillers and did one nerve block to help out with the diagnosis. She's also planning to fly down to Phoenix to learn how to do the botox injections from Dr. Hibner. Hopefully if I need another round of injections I can get them done here.
Thanks for reading this far, if you did!
Laura
