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.

@pb50

Well remember it was done almost 40 yrs ago 😳. Im sure they do it and send you home 20 mins later with no restrictions now 🙂

For 5 days i had to decide in the morning whether i wanted to be upstairs or downstairs for the day. The bathrooms were both upstairs in the split level, so that was the answer. I had an armchair with an ottoman and an adjustable bed. My friends took turns filling a picnic basket with soup and sandwiches and brought it by in the morning. In the evening my husband took it to the next friend when he got home from work. It was a system!! 🙂 during the day I was to walk around the room and the hall - on level flooring only. I had some in the bed exercises - mostly moving my legs - and i was supposed to rotate being vertical, Flat on the bed, and In a sitting position. No sudden moves. Showers not baths.
No narcotics - I dont like them and didn't need them.

No riding in the car until i went back to the surgeon. No driving for three weeks as I recall

Hope that's helpful!

Good luck!

Ps… it was a total success. Once in a blue moon it feels achy or I get twinge down my leg. And I momentarily panic. I drop to the floor in front of the couch and do the 90/90 stretching. I do all the stretching exercises that physical therapy gave me then. They still
Help.

Jump to this post

Thanks so much that’s very encouraging and real.
I don’t believe this will fix my back at this age. The entire spine is stenotic. If that’s a word. I know I will have pain other than the L345 but I’m hoping the sciatica will be gone and the claudation in the butt and numbness down to the foot. Maybe I will be able to walk a bit further so I can fight the peripheral artery desease in the lower leg.
This is one of for procedures I need at 78.
Thanks again Tony

REPLY
@tony1946

Thanks so much that’s very encouraging and real.
I don’t believe this will fix my back at this age. The entire spine is stenotic. If that’s a word. I know I will have pain other than the L345 but I’m hoping the sciatica will be gone and the claudation in the butt and numbness down to the foot. Maybe I will be able to walk a bit further so I can fight the peripheral artery desease in the lower leg.
This is one of for procedures I need at 78.
Thanks again Tony

Jump to this post

I think age is less of an issue to the surgery than the spinal stenosis you apparently have. I wish you all the luck!!

REPLY

Fun times. I have had "butt pain" for years. I have learned to refine where the pain settles and have had a garden variety of tests. It is all very individual specific. In the past year I have had more specific diagnosis of different causes and potential treatments.

It is imperative as a patient to learn and understand how your body works. Doing so will aid in self-care and communication with your provider.

I am having surgery to correct one issue that is very specific and the provider (surgeon) has told me the expectations. I take it as my responsibility to become very engaged in the process moving forward. If I want to communicate with the surgeon, I take steps that will effectively do it.

Again, we all have different expectations and experiences. Management is the best way towards success.

REPLY
@heisenberg34

I am sorry that you have had to go through this. 8 months or 8 years, it’s still pain. What surgery were they proposing to do? Did an MRI reveal something? I have never had any report of something in the glutes, but I know there is something there. I can feel it.
BTW, I had decent pain relief for about three years. Meds: Tramadol, diclofenac potsssium, and a muscle relaxant. Also had a spinal cord stimulator. Made life not so bad until 2021.
Hope you find something to help you.

Jump to this post

@heisenberg34
Have you had a MRI of your hips/pelvis to help diagnose the source of your pain in your buttocks? I have cervical and lumbar stenosis and always thought the pain in my buttocks was from my lumbar spine but I think there is more to source of my pain. I had a hip MRI last week to see what they can see in soft tissues. My hip X-ray did not show an issue with the hip joint space. My pain is in front near hip flexors, sides, and lower back above tailbone. I also have pain near my right buttock where my upper hamstring attaches to the bottom of my pelvis (believe it is at the ischial tuberosity). The pain makes it hard to sit/stand, especially after walking my dog. I never had anyone suggest looking at my sacrum for sacroilitis as a source of pain since I worked in a desk job over 30 years sitting way too many years. Being overweight and having a pregnancy can also put extra pressure on hips/pelvis. My hip/buttock problems are now affecting my knees making it hard to stand up from a seated position and stand/walk for long. Not fun to be so restricted at 54 years old. Makes me wonder if I will be in a wheelchair in my 60s and beyond (certainly didn’t expect to be disabled at this age).

REPLY
@annshrader

Fun times. I have had "butt pain" for years. I have learned to refine where the pain settles and have had a garden variety of tests. It is all very individual specific. In the past year I have had more specific diagnosis of different causes and potential treatments.

It is imperative as a patient to learn and understand how your body works. Doing so will aid in self-care and communication with your provider.

I am having surgery to correct one issue that is very specific and the provider (surgeon) has told me the expectations. I take it as my responsibility to become very engaged in the process moving forward. If I want to communicate with the surgeon, I take steps that will effectively do it.

Again, we all have different expectations and experiences. Management is the best way towards success.

Jump to this post

I am an exercise physiologist and studying Healthcare Systems Engineering. Having this education and experience has been empowering. Best.

REPLY
@dlydailyhope

@heisenberg34
Have you had a MRI of your hips/pelvis to help diagnose the source of your pain in your buttocks? I have cervical and lumbar stenosis and always thought the pain in my buttocks was from my lumbar spine but I think there is more to source of my pain. I had a hip MRI last week to see what they can see in soft tissues. My hip X-ray did not show an issue with the hip joint space. My pain is in front near hip flexors, sides, and lower back above tailbone. I also have pain near my right buttock where my upper hamstring attaches to the bottom of my pelvis (believe it is at the ischial tuberosity). The pain makes it hard to sit/stand, especially after walking my dog. I never had anyone suggest looking at my sacrum for sacroilitis as a source of pain since I worked in a desk job over 30 years sitting way too many years. Being overweight and having a pregnancy can also put extra pressure on hips/pelvis. My hip/buttock problems are now affecting my knees making it hard to stand up from a seated position and stand/walk for long. Not fun to be so restricted at 54 years old. Makes me wonder if I will be in a wheelchair in my 60s and beyond (certainly didn’t expect to be disabled at this age).

Jump to this post

So, you say that X-rays of hip showed nothing. Do you have MRI results yet?
I will be going for MRI later this month. I have multiple ones over the past 7 years. None have shown any issues with back or soft tissue. That’s assuming the radiologists we’re looking for those issues.
It’s hard to believe that nothing shows up. My recent pain has been gradually increasing over the past 5 or 6 months.

REPLY
@heisenberg34

So, you say that X-rays of hip showed nothing. Do you have MRI results yet?
I will be going for MRI later this month. I have multiple ones over the past 7 years. None have shown any issues with back or soft tissue. That’s assuming the radiologists we’re looking for those issues.
It’s hard to believe that nothing shows up. My recent pain has been gradually increasing over the past 5 or 6 months.

Jump to this post

@heisenberg34
I am supposed to get my hip/pelvis MRI results early this week and will share what they find. When I marked up the diagram of my hips to show where I have pain, I am hoping the radiologist focuses on them to see what may be the source of my pain in multiple locations in my hips/pelvis.

REPLY
@dlydailyhope

@heisenberg34
I am supposed to get my hip/pelvis MRI results early this week and will share what they find. When I marked up the diagram of my hips to show where I have pain, I am hoping the radiologist focuses on them to see what may be the source of my pain in multiple locations in my hips/pelvis.

Jump to this post

Ah, that's the rub, isn't it. I wonder sometimes if these radiologists really scrutinize your MRI, or just give it a cursory inspection due to the large load of scans to read. Or, if they are having a bad day and just want to get done quickly.. I had a two MRIs back in 2016 and 2017 which showed nothing remarkable. Then is August of 2017, an orthopedict surgeon orderd a closed MRI. He said it revealed spondylithesis at L5-S1. He recommentened fusion to get the two vertebrae lind up properly. Being fairly new at the game. I went ahead. Not one of the most pleasant experiences ever. I rehabed over the next month by waking every day. It healed up well, but did not offer any pain relief. So, I have to ask my self, "Self, who was correct? The two previous radiologists, or the one who supposedly saw spondylithesis? If your report does not reveal anything, get the disk and report. Have another radiologist check it over with explicit instructions to look for specific things.
I really hope that something turns up for your. 54 is way too young to be saddled with this kind of pain. My saving graces for three years were the meds and the spinal cord stimulator.
I'll be anxious to hear what the MRI reveals.

REPLY
@heisenberg34

So, you say that X-rays of hip showed nothing. Do you have MRI results yet?
I will be going for MRI later this month. I have multiple ones over the past 7 years. None have shown any issues with back or soft tissue. That’s assuming the radiologists we’re looking for those issues.
It’s hard to believe that nothing shows up. My recent pain has been gradually increasing over the past 5 or 6 months.

Jump to this post

@heisenberg34
I meant to mention that I have also had multiple MRIs since 2017 (brain, cervical,
thoracic, lumbar spine) and never had my hips/pelvis done until last week. My brain and thoracic MRIs did not show anything of concern but my cervical and lumbar spine showed spinal stenosis (severe in some places), degenerative disc disease, ligament thickening, facet joint arthritis, bone spurs, spinal cord flattening, disc bulges, etc. I was diagnosed with cervical spondylitic myelopathy spinal cord injury at C5C6 which affected my bladder control, walking, arm/hand weakness, and cause head/neck pain so I had ACDF surgery to stop the progression of spinal cord injury. I know my lumbar spine is the worst at L4-S1 but not sure if all of the pain in my hips/pelvis/buttocks can be tied to my lumbar spine. I have had things show up in my MRIs but had doctors ignore it despite telling them my symptoms. My experience working in and using the healthcare system has shown me what a mess it is. We spend a lot of time and money but get poor health outcomes and declining quality of life. It seems like many doctors don’t really know what they are doing and don’t admit anything. You are really lucky if you get a doctor who really cares about helping their patients feel better, prevent long term suffering, and improve their quality of life. Healthcare has become a for profit business which has negatively impacted patient care.

REPLY
@tony1946

Sorry for all your agonies.
Hoping to get a hemilamenotomy. This is minimally invasive decompression.
Even at 84 assuming you in ok shApe this is an hour procedure and minimal blood loss under general anesthesia .
Good luck . For extreme stenosis
Tony

Jump to this post

I'm just curious, is this being done by an orthopod, neurologist or pain dr?

A hemilaminectomy is what caused my lifetime (since I was 24) disability of CRPS, with spread, now from the hips down.

No such thjng as a simple back surgery. I'm not a big fan of SCS but also wanted to add a medical article I just found about trials, which only makes sense to me. Both produce scar tissue which is probably the cause of a lot of long term pain post op for people labeled "failed back surgery." The cure was to do it again. 4 times. Imagine my scar tissue now. Make sure you add future scar tissue into the mix before looking at sirgery. Esp if you heal keloid like I do?

Just adding that in.

"Spinal Cord Stimulation Trial Electrodes Rapidly Produce Epidural Scarring, Impeding Surgical Paddle Lead Placement"
Randall W Treffy et al. Neuromodulation. 2024.

REPLY
Please sign in or register to post a reply.