Chronic Buttock Pain

Posted by paulkem @paulkem, May 11, 2023

I will do my best to keep this brief, but it is a long story. I have had pain in my buttocks, sometimes hips, groin, sacral area for 5 months, along with tingling in both legs and feet. The pain is most intense in the intergluteal cleft, the area where pressure is applied while sitting. My entire buttock region is sensitive to pressure. The pain in the sacral area comes and goes, and is best described as a burning pain. The majority of symptoms are on my left, but are also on the right side. The groin pain is most often "flashes" of burning.

My first diagnosis was hemorrhoids since the first symptom was burning bowel movements. The burning bowel movements stopped, but then the other buttock pain intensified. In mid January, I had x-rays of my pelvis taken.

"Mild osteophytosis and sclerosis of the SI joints suggesting mild osteoarthritis. There is mild to moderate multilevel degenerative disc disease and facet arthropathy of the lumbar spine most prominent from L4-S1."
The pain started to really focus on a specific spot on my left buttock. It even hurt to just gently rub my finger against.

When I would sit in a car, especially driving, my legs tingle quite severely and the burning pain in my sacrum intensifies. (this also happened when I lay on my back)

By Feb 17, I thought maybe it was ischial bursitis. My doctor prescribed me a short course of steroids, but no change. The next step was MRIs of my pelvis and lumbar region.

IMPRESSION: * At L5-S1, right central disc protrusion deforms the anterior thecal sac and may contact the traversing right S1 nerve root, but the nerve root is not displaced. * At L4-5, posterior annular tear and central disc protrusion are superimposed on circumferential disc bulge. Although this deforms the anterior thecal sac, there is no obvious neural impingement. * L3-4 posterior annular tear and circumferential disc bulge. No neural impingement.
The radiating nerve irritation is on the inside of my thigh, near where the inseam of a pant leg would be, but maybe a little farther on the back of the leg. Sometimes it will go beneath the knee. My ankles have been burning some as well. My feet are often cold.

It was getting to the point where the only position I could be comfortable is laying down. And the only time I could fully escape the pain was during sleep.

On Feb 27, my doctor (nurse practitioner) is stumped and started questioning whether the pain is mental. I ask if we can explore PT, and he refers me. He did note the disc degeneration in my MRI and said he could refer me to a pain management doctor for local injections. I have no idea how that process works and decide to proceed with the PT.

At this time, he had me try Cymbalta but I am pretty certain that it caused some severe insomnia so I stopped taking it after a few days. I was pretty stressed at this time due to an upcoming colonoscopy. The NP continued to question whether this was anxiety or psychosomatic. I had to start taking sleep aids.
PT started on Mar 8. I was excited to get in front of someone who knew more details of the nerves/muscles/spine, and someone who would listen to me. Upon evaluation for the severe pain in the spot in my left buttock, the PT determined that the connection of my hamstring to my pelvis had become frayed or damaged. Certain actions of my hamstring triggered intense pain.  We started exercises that focused on the hamstring. We talked about some of the tingling but didn't really address it much. He thought it may have been due to the lack of sleep.

The PT was definitely helping the intense pain spot. I do not recall the level of pain in the rest of the buttock area.

My colonoscopy was on Mar 14 and the results were fine. The few days after this was the only time since late December that I actually felt normal. Then, on Mar 18, I started having neck pain. My PT could not help me with the neck issue at this time since the order was for the buttock pain. Sleep is the only place I could fully escape, so I started sleeping A LOT.  At certain times of the day, after I have been upright for a time, I would just have this "sinking" feeling like my entire spine was collapsing. I tried heat, NSAIDs, Apsercreme, nothing really worked well. 
Mar 29 was the last day of PT for the specific spot on my buttock. PT performed the same actions as on day 1 and the pain in that spot was no longer triggered. I visited a doctor about my neck. He felt my neck and said that I felt tight (and was sore) on the left side. He said to try more naproxen or ibuprofen. I mentioned the seat and leg pain, and he said to try the gabapentin at night again. I told him my PT said he could help if I had a new order, but he would want x-rays since I told him I knew my neck as deformed (I have autofused vertebrae from birth).

During this time, my neck was my biggest misery, with the other issues still present.
I messaged my doctor again and asked about the buttock and leg issues. He said he could refer me to pain management for injections in my back. I asked him if the assumption then was that this leg tingling is related to my back and he said "he feels that is most likely the cause". I then asked if it would make sense to talk to someone in ortho/neuro about my MRI and symptoms before pursuing the injections.I was referred to an Ortho. While making the appointment, I had to choose what area I wanted to treat.

At that time, my neck was most bothersome, so I started there. During the first visit, I did not see the doctor, but an NP. We looked at my imaging and talked about my neck, the autofused vertebrae, the disc degeneration. I asked some questions about my buttock issue. She suggested that maybe it was an SI joint issue and once again, it was suggested that I visit pain management for injections. She said we could try Celebrex to see if that helped any first. She tested my reflexes and since I was hyperreflexive, ordered a neck MRI and follow up. Two weeks later, I had the MRI and follow-up, this time with the doctor. The issue in my buttocks had intensified, and the neck pain was more intermittent. The doctor said I was not a candidate for surgery on my neck and was experiencing what millions of others are experiencing regarding disc degeneration. He asked what I had tried so far. I said just OTC NSAIDs. He said the next step is PT. As is typical, he was very rushed and I tried to ask questions about my buttock pain, but was not really allowed to get into as much depth as I would have liked. In the end, he added the "lumbar" issue to my PT order.

I started PT again last week. Even after just two sessions, my neck is quite a bit better. I had some very tight muscles in my shoulder region that he was able to loosen up, and has been doing some very light manual traction. He did some provocative tests on my SI, and while not conclusive, there were some results that pointed to an issue. He said that he has only treated SI joint issues a handful of times, and did not think that they often were accompanied with the leg nerve pain.  He gave me an SI belt yesterday and said that I should start noticing a difference by the end of the night. I have been wearing it since, and really have not noticed much change yet. It does seem to make me more stable while walking, but the buttock pain while sitting, and at least some level of tingling is still there. I am trying to give it time, even though he said the impact should be noticeable quickly. Honestly, he seems stumped. I trust him very much, and he seems dedicated to trying to help me, but he wants to go down the path of the source just being sitting too much, and I do not think that is the case. I have made an appointment with another PT in town that offers a free consultation to get his take. I have also made an appointment with a massage therapist. 
The Celebrex does not seem to be doing anything.

I have been trying to get some clarification from the ortho NP who talked to me the most about my buttocks, but the office is very slow to reply and I only get replies from the nurse assistant and don't even know if my questions are being seen by the NP.

As much as I hate needles, I am not opposed to injections, if we know what needs to be injected. But I would prefer to FIX the issue rather than cover it up.  I did get a referral to Pain Management but have not had an appointment set yet.

The last 5 months have been miserable. I am not performing to the level I should be at work or home. I am thankful that I work from home and have flexibility. It is still the worst while driving and I rarely go anywhere anymore. I have missed out on so much, including time with my family. I am wiped out by 5:00 pm and am often in bed by 7:00 or 8:00. Relief from the neck pain is helping, but I cannot escape the buttock pain.

Can anyone provide any insight? Does this sound like an issue with my SI joint? Could those protrusions mentioned on my MRI be the issue?  I am so desperate for answers I don't know where to go.

Interested in more discussions like this? Go to the Bones, Joints & Muscles Support Group.

@kforrest

thank you for sharing. looking at hip replacement down the road

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You're very welcome. I'm told hip replacement is much easier to recover from than knee and shoulder. Well, I'll soon find out.

One thing to note about hip replacement - the surgeon can make an anterior (frontal) incision or posterior incision. Anterior is preferred because muscles are pushed to the side rather than cut. In a posterior incision, muscles of the glutes are cut and then sewn back together. I'm told recovery is more painful, a bit slower, and severed and repaired muscles can never go back to their pre-surgery state.

The incision site is decided by the surgeon. I don't know what that involves, but anterior sounds like the best way to go. At any rate, recovery from hip replacement is usually very doable.

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@heyjoe415

You're very welcome. I'm told hip replacement is much easier to recover from than knee and shoulder. Well, I'll soon find out.

One thing to note about hip replacement - the surgeon can make an anterior (frontal) incision or posterior incision. Anterior is preferred because muscles are pushed to the side rather than cut. In a posterior incision, muscles of the glutes are cut and then sewn back together. I'm told recovery is more painful, a bit slower, and severed and repaired muscles can never go back to their pre-surgery state.

The incision site is decided by the surgeon. I don't know what that involves, but anterior sounds like the best way to go. At any rate, recovery from hip replacement is usually very doable.

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than you for that info!!

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You experienced what so many of us experience at the doctors office. A rushed visit, oten after waiting a while to get in. Lots of questions, but no time to ask them. Doc glances at your chart, then answers the easiest questions. "Doc, can you look into XYZ, or other possibilites?". "Oops, time is up. Let's set your next appointment. See you then.

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So sorry you are suffering without answers or treatment. Did you have a pelvic or sacrum MRI? Any chance you might have a tarlov cyst which can cause chronic buttock pain and tingling and numbness etc. Here is a Tarlov organization talking about it.

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This sounds similar to my situation. It’s been almost 2 years of back pain, left hip/buttock pain. I can’t sit at all. I stand majority of the day or lay on my right side. Started with tingling down both legs & arms. They put me on Cymbalta which did help. I had 7 MRI’s within 8 months. I do have some bulged discs but the Dr’s said no big deal, most people have them & they don’t cause this much pain. I do have scoliosis which I found out at my first urgent care visit from all of this. All the Dr’s say again that the scoliosis shouldn’t cause this pain.
Pain on left side of back & it feels very hard & sticks out more than my right side. The pain in hip started later. Lower back pain started first.
I’ve seen neurologists, rheumatologist, ortho, back surgeon, primary, PT, pain Dr, chiropractor & now doing decompression. I had a rhizotomy & steroid injection- neither worked. No meds they gave worked. I don’t want to be on pain meds. I was 52 when this all happened. Good shape, golfed, pickleball, worked out. Never felt like I hurt my back. One day it just started & never stopped. My life changed drastically & I was depressed & not sleeping. Dr & PA’s made me feel like it’s in my head & said I should talk to a therapist. I didn’t want to live anymore. The pain is constant everyday. I haven’t been able to do the things I love. I’m constantly researching myself because I know this is not in my head. The hip pain started more recently & sometimes I can hardly walk. I had muscle atrophy from not doing anything for a year. PT did help me to get some strength back. I’m still working on that but I’m slowly working out on machines & walking a few times a week (2.8 miles). I can barely walk up the stairs after.
I found the person that helped me the most was my chiropractor. I have more mobility now but pain is bad.
I worry I’m making things worse by the walking. How do Dr’s not know what is wrong? We’ve spent so much money on my health stuff & meds.
I can’t live the rest of my life like this but I don’t know where to go from here.
I hope you find answers for your pain!

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@tami007

This sounds similar to my situation. It’s been almost 2 years of back pain, left hip/buttock pain. I can’t sit at all. I stand majority of the day or lay on my right side. Started with tingling down both legs & arms. They put me on Cymbalta which did help. I had 7 MRI’s within 8 months. I do have some bulged discs but the Dr’s said no big deal, most people have them & they don’t cause this much pain. I do have scoliosis which I found out at my first urgent care visit from all of this. All the Dr’s say again that the scoliosis shouldn’t cause this pain.
Pain on left side of back & it feels very hard & sticks out more than my right side. The pain in hip started later. Lower back pain started first.
I’ve seen neurologists, rheumatologist, ortho, back surgeon, primary, PT, pain Dr, chiropractor & now doing decompression. I had a rhizotomy & steroid injection- neither worked. No meds they gave worked. I don’t want to be on pain meds. I was 52 when this all happened. Good shape, golfed, pickleball, worked out. Never felt like I hurt my back. One day it just started & never stopped. My life changed drastically & I was depressed & not sleeping. Dr & PA’s made me feel like it’s in my head & said I should talk to a therapist. I didn’t want to live anymore. The pain is constant everyday. I haven’t been able to do the things I love. I’m constantly researching myself because I know this is not in my head. The hip pain started more recently & sometimes I can hardly walk. I had muscle atrophy from not doing anything for a year. PT did help me to get some strength back. I’m still working on that but I’m slowly working out on machines & walking a few times a week (2.8 miles). I can barely walk up the stairs after.
I found the person that helped me the most was my chiropractor. I have more mobility now but pain is bad.
I worry I’m making things worse by the walking. How do Dr’s not know what is wrong? We’ve spent so much money on my health stuff & meds.
I can’t live the rest of my life like this but I don’t know where to go from here.
I hope you find answers for your pain!

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I also have terrible buttock and hip, back pain. Supposedly I was told it was a pinched nerve. Went and had that taken care of but still have the pain. I sit on ice pack then do what I have to do. It’s the only thing that helps. It is a good pain killer. I agree it is frustrating, but what choice do we have?

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@tami007

This sounds similar to my situation. It’s been almost 2 years of back pain, left hip/buttock pain. I can’t sit at all. I stand majority of the day or lay on my right side. Started with tingling down both legs & arms. They put me on Cymbalta which did help. I had 7 MRI’s within 8 months. I do have some bulged discs but the Dr’s said no big deal, most people have them & they don’t cause this much pain. I do have scoliosis which I found out at my first urgent care visit from all of this. All the Dr’s say again that the scoliosis shouldn’t cause this pain.
Pain on left side of back & it feels very hard & sticks out more than my right side. The pain in hip started later. Lower back pain started first.
I’ve seen neurologists, rheumatologist, ortho, back surgeon, primary, PT, pain Dr, chiropractor & now doing decompression. I had a rhizotomy & steroid injection- neither worked. No meds they gave worked. I don’t want to be on pain meds. I was 52 when this all happened. Good shape, golfed, pickleball, worked out. Never felt like I hurt my back. One day it just started & never stopped. My life changed drastically & I was depressed & not sleeping. Dr & PA’s made me feel like it’s in my head & said I should talk to a therapist. I didn’t want to live anymore. The pain is constant everyday. I haven’t been able to do the things I love. I’m constantly researching myself because I know this is not in my head. The hip pain started more recently & sometimes I can hardly walk. I had muscle atrophy from not doing anything for a year. PT did help me to get some strength back. I’m still working on that but I’m slowly working out on machines & walking a few times a week (2.8 miles). I can barely walk up the stairs after.
I found the person that helped me the most was my chiropractor. I have more mobility now but pain is bad.
I worry I’m making things worse by the walking. How do Dr’s not know what is wrong? We’ve spent so much money on my health stuff & meds.
I can’t live the rest of my life like this but I don’t know where to go from here.
I hope you find answers for your pain!

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Hello, I am sorry to hear of your debilitating pain. I was experiencing this 2 yrs ago and my pain management Dr. sent me to a Pelvic Floor specialist who expertly decided after some strange physical tests that I had a pinched nerve in my sacral area that no one but a pelvic floor specialist would recognize. For 12 weeks she did her very specialized treatment including, exercises, stretching, cupping, needling, ultrasound, etc and I got absolute relief and havent had any problems since. It was a very mild, gradual experience where I didnt think it was really helping until one day I suddenly realized I didnt hurt and I didnt realize exactly when it stopped. It was a lifesaver even though it was a bit tedious to go to PT 2x week for 12 weeks but it worked. Best of luck to you.

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@tami007

This sounds similar to my situation. It’s been almost 2 years of back pain, left hip/buttock pain. I can’t sit at all. I stand majority of the day or lay on my right side. Started with tingling down both legs & arms. They put me on Cymbalta which did help. I had 7 MRI’s within 8 months. I do have some bulged discs but the Dr’s said no big deal, most people have them & they don’t cause this much pain. I do have scoliosis which I found out at my first urgent care visit from all of this. All the Dr’s say again that the scoliosis shouldn’t cause this pain.
Pain on left side of back & it feels very hard & sticks out more than my right side. The pain in hip started later. Lower back pain started first.
I’ve seen neurologists, rheumatologist, ortho, back surgeon, primary, PT, pain Dr, chiropractor & now doing decompression. I had a rhizotomy & steroid injection- neither worked. No meds they gave worked. I don’t want to be on pain meds. I was 52 when this all happened. Good shape, golfed, pickleball, worked out. Never felt like I hurt my back. One day it just started & never stopped. My life changed drastically & I was depressed & not sleeping. Dr & PA’s made me feel like it’s in my head & said I should talk to a therapist. I didn’t want to live anymore. The pain is constant everyday. I haven’t been able to do the things I love. I’m constantly researching myself because I know this is not in my head. The hip pain started more recently & sometimes I can hardly walk. I had muscle atrophy from not doing anything for a year. PT did help me to get some strength back. I’m still working on that but I’m slowly working out on machines & walking a few times a week (2.8 miles). I can barely walk up the stairs after.
I found the person that helped me the most was my chiropractor. I have more mobility now but pain is bad.
I worry I’m making things worse by the walking. How do Dr’s not know what is wrong? We’ve spent so much money on my health stuff & meds.
I can’t live the rest of my life like this but I don’t know where to go from here.
I hope you find answers for your pain!

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I don't know if I am replying to just one person or this whole group but if you have MRI's of your sacrum and/or pelvic MRI look at the written reports and then at the actual images and see if you have Tarlov Cysts (also called perineural cysts or sacral nerve root cysts). They can appear anywhere along the spine but mostly in the sacrum. They are under-reported, ignored and misdiagnosed for many people. They can cause pain when sitting, standing too long and when laying flat on your back, buttock pain, tingling and numbness in legs and feet even headaches. They can cause a lot of female issues and problems with urinating and bowel issues. FIRST you need to see if you have them.

If so, here is a Facebook site with thousands of patients talking about their experiences with them and their surgery etc It's a private group so you have to join to read posts:
https://www.facebook.com/groups/cystersandmysters/
Very few surgeons will operate on them because they are the ballooning of a nerve root so they cannot simply be removed.

Here are two top rated surgeons who do operate on them:

Dr. Rudolph Schrot from CA


Dr. Frank Feigenbaum from TX
https://www.frankfeigenbaum.com/

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Another possibility is Neurological Lyme Disease. Have you looked into that? So many neurological symptoms can be caused by tick borne infections.

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@barbj7

I also have terrible buttock and hip, back pain. Supposedly I was told it was a pinched nerve. Went and had that taken care of but still have the pain. I sit on ice pack then do what I have to do. It’s the only thing that helps. It is a good pain killer. I agree it is frustrating, but what choice do we have?

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I have what sounds similar. I have been to a neurologist, who sent me to a PT for McKenzie Method PT, no help. Went to an orthopedic clinic...who gave me a localized injection (No relief). So I use lidocaine/menthol patches at night and when it gets really bad, I use a TENS machine. I have suggested that maybe it is a nerve problem under the piriformis, but I can not get someone to order a scan. I also have Tramadol, which I can use when I don't use the other med, but it is very limited because of fear of addiction. Let me know if you have tried any of these things. I hope you have relief soon...try the patches?

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