Pain in the butt - Can't sit down

Posted by ecalderman @ecalderman, Nov 21, 2012

I have had very intense pain at my sitz bones for over 7 months and am unable to sit down. when I sit, it feels like I am sitting on two hot pokers or rocks and it is really unbearable. So, I have been standing for seven months. I've been to a couple of spine and pain management doctors, an orthopedist, a chiropractor, a neurologist, an acupuncturist, and a massage therapist. The original diagnosis was ischial bursitis but that ha not appeared on any images. I don't have any issues with any of my lumbar disks. I'm in constant pain even when standing or lying down though those activities do not hurt as much as sitting. Has anyone heard of anything like this before?

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I have had chronic sitting pain for 10+ years, in the tailbone, sitz bone, sacroiliac joint, hip, sometimes leg, all on the left side only. I also have pudendal nerve entrapment on left side. After every treatment and test out there, it is thought to be from multilevel arthritis of the spine, the first dx my Internist gave me before any test. I can’t take any Nsaids or gabepentin due to allergic reactions. I can’t take opioids b/c they cause diarrhea/constipation and worse yet, involuntary loss of stool. I do take Lyrica and Cymbalta each of which help somewhat. I just had a spinal cord stimulator placed and am still in the phase where different settings are being tried out. My pain is generally less at the forefront of my attention and more background noise, but the stimulator is not going to be perfect, it appears. This is a very difficult condition and pain is a constant. But there are so many illnesses that are worse. I am 82 and count my lucky stars.

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@bunnybear

I have had chronic sitting pain for 10+ years, in the tailbone, sitz bone, sacroiliac joint, hip, sometimes leg, all on the left side only. I also have pudendal nerve entrapment on left side. After every treatment and test out there, it is thought to be from multilevel arthritis of the spine, the first dx my Internist gave me before any test. I can’t take any Nsaids or gabepentin due to allergic reactions. I can’t take opioids b/c they cause diarrhea/constipation and worse yet, involuntary loss of stool. I do take Lyrica and Cymbalta each of which help somewhat. I just had a spinal cord stimulator placed and am still in the phase where different settings are being tried out. My pain is generally less at the forefront of my attention and more background noise, but the stimulator is not going to be perfect, it appears. This is a very difficult condition and pain is a constant. But there are so many illnesses that are worse. I am 82 and count my lucky stars.

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You have lived 82 years more than most. Congratulations! I also have pudendal neuralgia, all the same symptoms you have described. I’ve had 2 stimulators and they just weren’t working out for me so I had to take them out and now going in for a pain pump trial. The opioids cymbalta lyric a work to some degree but I can’t seem to regulate them anymore because I don’t want them so I take less then the pain compounds double then I take them more often so I’m sick and tired of them I want my life back my family and friends want me back I m in bed most days for hours. So today’s the day for the pain pump trial I hope it works. I’m 61 years young but feeling like I’m pushing daisy’s. Lol. I hope they dial the stimulator in for you. Good luck 👍.

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@vinnie4646

You have lived 82 years more than most. Congratulations! I also have pudendal neuralgia, all the same symptoms you have described. I’ve had 2 stimulators and they just weren’t working out for me so I had to take them out and now going in for a pain pump trial. The opioids cymbalta lyric a work to some degree but I can’t seem to regulate them anymore because I don’t want them so I take less then the pain compounds double then I take them more often so I’m sick and tired of them I want my life back my family and friends want me back I m in bed most days for hours. So today’s the day for the pain pump trial I hope it works. I’m 61 years young but feeling like I’m pushing daisy’s. Lol. I hope they dial the stimulator in for you. Good luck 👍.

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I totally understand. I really hope this pain pump works for you. I want to read about it because I know nothing about it at all. I would really appreciate if you could let me know how it works out for you. Get up and move when you can. I hope you have people around you who care. If not, find something you can get out and do that’s fun. For me it’s going to Senior Game Day at our community center. It helps to just be around other people who enjoy a shared interest. Your comment about pushing up daises made me laugh out loud because I totally get it. Bedt of luck with your procedure!

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@bunnybear

I totally understand. I really hope this pain pump works for you. I want to read about it because I know nothing about it at all. I would really appreciate if you could let me know how it works out for you. Get up and move when you can. I hope you have people around you who care. If not, find something you can get out and do that’s fun. For me it’s going to Senior Game Day at our community center. It helps to just be around other people who enjoy a shared interest. Your comment about pushing up daises made me laugh out loud because I totally get it. Bedt of luck with your procedure!

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Well I had the pain pump trial and I’m on the fence about an implant it only really helped me about 3-4 hours. Just as much as my pain meds so I am not looking forward to another surgery and have a follow up appointment in 7 days. I’m interested to hear anyone who has experienced the use of a pain pump for pudendal neuralgia? Did it help? Please share your experience if it works out? Thanks 🙏

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Hello!! I came across your post. I know it's old and we are not in 2023 but I'm going thru what you are out were. Please tell me if you ever found out what was wrong. I'm desperate.

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I am interested in your his too. I have sitting pain and also have a burning aching pain feeling in the penis along with other pelvic pains. I have had some success at times with physical therapy but I get worse again. I try not to sit which helps. I find if I am stressed it gets worse. It does not like tensing the sphincter muscles, the pain is less when I relax the pelvic floor. I am now going to pain management and possibly have a pudendal nerve block. I am looking for anyone who has had this and how it felt after the shot and weeks after. While I am able to get the pain down at times I am still trying to figure out how to drive distances to my grand kids without being put in bad pain and how to lower my stress to keep the pain down. I have frequent urination which impacts my sleep at night. Lack of sleep lowers my pain tolerance. What is strange the pain does not stop me from fall asleep while a much less minor pain will. I would like to know about people’s experiences with the nerve block, how was it when it was done, did you get immediate relief or relief over a period of time and any other experience. My number one goal is to enjoy my grandchildren and this pain is having a major impact on me of enjoying life. At times I just want to lye down and do nothing. The pain seems to be a magnification of senses, it does not stop me from doing physical things but hurts and makes me not want too. I wish everyone happiness.

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@pamperme

I am interested in your his too. I have sitting pain and also have a burning aching pain feeling in the penis along with other pelvic pains. I have had some success at times with physical therapy but I get worse again. I try not to sit which helps. I find if I am stressed it gets worse. It does not like tensing the sphincter muscles, the pain is less when I relax the pelvic floor. I am now going to pain management and possibly have a pudendal nerve block. I am looking for anyone who has had this and how it felt after the shot and weeks after. While I am able to get the pain down at times I am still trying to figure out how to drive distances to my grand kids without being put in bad pain and how to lower my stress to keep the pain down. I have frequent urination which impacts my sleep at night. Lack of sleep lowers my pain tolerance. What is strange the pain does not stop me from fall asleep while a much less minor pain will. I would like to know about people’s experiences with the nerve block, how was it when it was done, did you get immediate relief or relief over a period of time and any other experience. My number one goal is to enjoy my grandchildren and this pain is having a major impact on me of enjoying life. At times I just want to lye down and do nothing. The pain seems to be a magnification of senses, it does not stop me from doing physical things but hurts and makes me not want too. I wish everyone happiness.

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I feel your pain (pun intended). I feel while skiing back in '016. Landed hard on my lower back and buttocks. I have had all kinds if pain issues ever since,. I'll cut those out to save space. Ever since then, it has felt like I am sitting on something like a hockey puck in each buttock. No one has been able to diagnose or trat it. Believe me, I've been to more docs of every persuason... more than I can keep of track of. Spinal fusion. injections, nerve block, spinal cord stimulator (2). morphine pain pump, physical therapy, etc. Nothing has EVER touched this pain (I am feeling it right now, despite the pain pump and meds). I am seeing a new pain specialist who claims he can help me. I say "Ha!"! Talk is cheap. Show me results. Anyway, I hope your procedure helps you. Really.

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@vinnie4646

Well I had the pain pump trial and I’m on the fence about an implant it only really helped me about 3-4 hours. Just as much as my pain meds so I am not looking forward to another surgery and have a follow up appointment in 7 days. I’m interested to hear anyone who has experienced the use of a pain pump for pudendal neuralgia? Did it help? Please share your experience if it works out? Thanks 🙏

Jump to this post

I had the pump implanted back in April. After getting it readjusted upward to a higher level, I had significant pain relief (down to a 2 from a 7-8). It was wonderful. I had a new zip in my step... for about a week. And then all the pain returned. Subsequent adjustments have done nothing. I just have this lump in the front of my abdomen, apparently doing nothing. New pain doc has me going in to get the pump checked out to make sure everything is working OK. He seems to think that adding new meds to the pump may help. I am not very confident. I am not saying don't get the pump. The trial went quite well. Apparently no guarantee that the actual pump will help. Just saying.

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@bunnybear

I have had chronic sitting pain for 10+ years, in the tailbone, sitz bone, sacroiliac joint, hip, sometimes leg, all on the left side only. I also have pudendal nerve entrapment on left side. After every treatment and test out there, it is thought to be from multilevel arthritis of the spine, the first dx my Internist gave me before any test. I can’t take any Nsaids or gabepentin due to allergic reactions. I can’t take opioids b/c they cause diarrhea/constipation and worse yet, involuntary loss of stool. I do take Lyrica and Cymbalta each of which help somewhat. I just had a spinal cord stimulator placed and am still in the phase where different settings are being tried out. My pain is generally less at the forefront of my attention and more background noise, but the stimulator is not going to be perfect, it appears. This is a very difficult condition and pain is a constant. But there are so many illnesses that are worse. I am 82 and count my lucky stars.

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So sorry for all your pain. I, too, have pain when I'm sitting.
The bone of the left side of my butt protrudes and when I was taking baths I had to shift to my right side. Weirdly the right bone doesn't protrude or hurt. The left hurts as I sit in my soft comfy chair. I've lost 50 pounds and I don't remember this pain before that but I still don't know why the bone protrudes.

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@heisenberg34

I feel your pain (pun intended). I feel while skiing back in '016. Landed hard on my lower back and buttocks. I have had all kinds if pain issues ever since,. I'll cut those out to save space. Ever since then, it has felt like I am sitting on something like a hockey puck in each buttock. No one has been able to diagnose or trat it. Believe me, I've been to more docs of every persuason... more than I can keep of track of. Spinal fusion. injections, nerve block, spinal cord stimulator (2). morphine pain pump, physical therapy, etc. Nothing has EVER touched this pain (I am feeling it right now, despite the pain pump and meds). I am seeing a new pain specialist who claims he can help me. I say "Ha!"! Talk is cheap. Show me results. Anyway, I hope your procedure helps you. Really.

Jump to this post

I have fallen that way skiing. I do not know what started this nerve pain I the pelvic area but I had surgery for an enlarged prostate which causes retrograde ejaculation and later started having pain in the perinium area. The perinium pain became worse after ejaculating. They treated me for prostatasis and did surgery to remove some blockage which did not work. I learned to live with the pain and got burning in the penis area and spikes in the rectum area along with the perinium area pain for ten years. When I found out I might have prostate cancer I became extremely stressed because I had ignored these pains and frequency urinary issues which was severely affecting my sleep. The pain also increased and I started to have burning in the rectum area also and the perinium pain became bad and would not go away. Before surgery my whole pelvic was inflamed in pain and my urologist said it was not an infection and it was nerve pain. It disappeared after a day of absolute misery When they removed my prostate for cancer the perinium pain disappeared and I had catheter in and woke up feeling fantastic. The whole week was wonderful sleeping through the night. I had a little rectum pain and some penis pain.
The catheter was removed and I started to get the horrendous sitting pain and penis pain I have been battling this pelvic pain now over a year after surgery along with incontinence. I am at a point now where I need the pain to be lowered and need sleep. I get in so much pelvic pain at times that it feels like it is coming from the whole pelvic area. I need to be able to manage the pain to a tolerable level. I know I am depressed even with my grandchildren being around me almost all the time. Without them as a distraction I do not know what I would do. I need the positives and lucky I have them. Wishing everyone happiness

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