Wife of a PN Husband Seeking Anything to Help
Posted: Fri Feb 02, 2018 12:17 am
Hi everybody! I'm Julie from Colorado, USA. I love that this message board exists. I'm sad I didn't find it sooner.
My husband of 5.5 years, a computer engineer, has suffered with pudendal nerve entrapment since he was about 20 (he's currently 35, I'm 33). He's not certain, but he thinks it developed because of the tiny little sports car he bought for himself around 19 which he used to commute to work (90 minutes round-trip) every day for years and years. He is a very large human being 6'6" 260lb with enormous size 16 feet (2 meters tall, 118kg, 18.6 stone, size 50 shoes). That sports car had him squished up almost into a ball when driving.
Here are the most significant aspects of his pain:
* Pressure anywhere from around his navel to halfway down his thighs causes pudendal pain. He has to buy pants that are a few sizes too big and just keep pulling them up. Suspenders with pants that are WAY too big would be the best for him, except that he's not comfortable with the way that looks.
* His feet are somehow connected to the pain as well. If his shoes aren't laced in an extremely particular fashion and tightness, the pain in his pudendal area increases.
* He brings Crocs with him everywhere he goes, even work, to change into because they offer a lot of comfort and relief, especially at a standing workstation.
* When sitting on a hard surface for more than 5 minutes at a time, he is in excruciating pain for 24 hours.
* When he's at the height of his pain, at least it can't get any worse, he says, so while sitting remains excruciatingly painful, at least it doesn't increase his highest pain felt.
* Pain scale: 1 - 2 normally without sitting, 3 after sitting, 6 at its very worst (We're very particular about accurately reporting pain scale numbers and not exaggerating. For instance, I even call my kidney stones a 9.5 because I just don't feel like it's possible for me to have ever experienced a 10 without just blacking out or going into shock or something.)
* Full bowels increase pain, pain is briefly relieved for about 20 minutes after he has a bowel movement.
* Booths (like in restaurants) are always preferable to hard wooden chairs. Even when using his pillows, hard chairs cause way more pain than a pillow on a booth seat.
Treatments we've tried:
* Narcotics - obviously these do nothing at all and, because of the constipation, actually make the pain worse
* Gabapentin - when the doctor asks, he says, "Well, it does a thing...but it definitely doesn't take away any pain. It's more like it just prevents me from thinking about it so much."
* Memory Foam Pillows - he sits on these wherever he goes. He has one for the car, one for work, and ones strategically placed throughout the house. We bring the one from the car with us if we ever go to a restaurant.
* Stretches & foot massage (he's able to massage his own feet in such a way that it relieves some of his pain - he has to use all his strength to press on certain areas.)
* Extremely hot, short baths and/or jacuzzi. It has to be so hot that his skin is beet red afterward.
* Pudendal nerve block - my God, this was a horrendous experience. The only relief he experienced was from the local anesthetic which wore off about 24 hours later. After that, he had WAAAAAAAY worse pain for months. He started to wonder if his pain would stay worse forever, but it finally went back to its normal level after a few months. During this time, he was so miserable that he'd come home from work and go straight to sleep just to escape the pain. I know they say the nerve block procedure can sometimes take a few times before it finally works, but I highly doubt he'd be able to endure that again.
* Sleeping. I remember when I first met him, I never met anybody who took so many naps. Now I know it's because sometimes, that was the only way he could escape the pain. Especially on days at work before he started sitting on a pillow.
I'm excited to read about some of your experiences and hopefully find a decent solution for his sitting problems. Specifically, we're seeking a foam pillow he can carry around with him that looks less like a pillow. Something with handles and maybe a removable outer casing that can be washed. Our biggest obstacle so far is finding one with foam that's high enough because he squishes everything he sits on because of his size and weight.
Thanks for existing! And I'm happy to hear ANY and ALL suggestions/personal stories you have, even if we've already tried them too. The more knowledge, the better! I wish I could have his pain instead, but since I can't, I'm desperate to find him the closest thing to a solution that I possibly can. I realize it'll probably be a neverending search, but I'm fine with making incremental progress. I love him so much that I'm ready to pull out all the stops and do mounds & mounds of research.
My husband of 5.5 years, a computer engineer, has suffered with pudendal nerve entrapment since he was about 20 (he's currently 35, I'm 33). He's not certain, but he thinks it developed because of the tiny little sports car he bought for himself around 19 which he used to commute to work (90 minutes round-trip) every day for years and years. He is a very large human being 6'6" 260lb with enormous size 16 feet (2 meters tall, 118kg, 18.6 stone, size 50 shoes). That sports car had him squished up almost into a ball when driving.
Here are the most significant aspects of his pain:
* Pressure anywhere from around his navel to halfway down his thighs causes pudendal pain. He has to buy pants that are a few sizes too big and just keep pulling them up. Suspenders with pants that are WAY too big would be the best for him, except that he's not comfortable with the way that looks.
* His feet are somehow connected to the pain as well. If his shoes aren't laced in an extremely particular fashion and tightness, the pain in his pudendal area increases.
* He brings Crocs with him everywhere he goes, even work, to change into because they offer a lot of comfort and relief, especially at a standing workstation.
* When sitting on a hard surface for more than 5 minutes at a time, he is in excruciating pain for 24 hours.
* When he's at the height of his pain, at least it can't get any worse, he says, so while sitting remains excruciatingly painful, at least it doesn't increase his highest pain felt.
* Pain scale: 1 - 2 normally without sitting, 3 after sitting, 6 at its very worst (We're very particular about accurately reporting pain scale numbers and not exaggerating. For instance, I even call my kidney stones a 9.5 because I just don't feel like it's possible for me to have ever experienced a 10 without just blacking out or going into shock or something.)
* Full bowels increase pain, pain is briefly relieved for about 20 minutes after he has a bowel movement.
* Booths (like in restaurants) are always preferable to hard wooden chairs. Even when using his pillows, hard chairs cause way more pain than a pillow on a booth seat.
Treatments we've tried:
* Narcotics - obviously these do nothing at all and, because of the constipation, actually make the pain worse
* Gabapentin - when the doctor asks, he says, "Well, it does a thing...but it definitely doesn't take away any pain. It's more like it just prevents me from thinking about it so much."
* Memory Foam Pillows - he sits on these wherever he goes. He has one for the car, one for work, and ones strategically placed throughout the house. We bring the one from the car with us if we ever go to a restaurant.
* Stretches & foot massage (he's able to massage his own feet in such a way that it relieves some of his pain - he has to use all his strength to press on certain areas.)
* Extremely hot, short baths and/or jacuzzi. It has to be so hot that his skin is beet red afterward.
* Pudendal nerve block - my God, this was a horrendous experience. The only relief he experienced was from the local anesthetic which wore off about 24 hours later. After that, he had WAAAAAAAY worse pain for months. He started to wonder if his pain would stay worse forever, but it finally went back to its normal level after a few months. During this time, he was so miserable that he'd come home from work and go straight to sleep just to escape the pain. I know they say the nerve block procedure can sometimes take a few times before it finally works, but I highly doubt he'd be able to endure that again.
* Sleeping. I remember when I first met him, I never met anybody who took so many naps. Now I know it's because sometimes, that was the only way he could escape the pain. Especially on days at work before he started sitting on a pillow.
I'm excited to read about some of your experiences and hopefully find a decent solution for his sitting problems. Specifically, we're seeking a foam pillow he can carry around with him that looks less like a pillow. Something with handles and maybe a removable outer casing that can be washed. Our biggest obstacle so far is finding one with foam that's high enough because he squishes everything he sits on because of his size and weight.
Thanks for existing! And I'm happy to hear ANY and ALL suggestions/personal stories you have, even if we've already tried them too. The more knowledge, the better! I wish I could have his pain instead, but since I can't, I'm desperate to find him the closest thing to a solution that I possibly can. I realize it'll probably be a neverending search, but I'm fine with making incremental progress. I love him so much that I'm ready to pull out all the stops and do mounds & mounds of research.
