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.

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Hi @paulkem…so far so good! Give your story another try. If posting it doesn’t work, let me know. Are you trying to include a link or attachment?

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@loribmt

Hi @paulkem…so far so good! Give your story another try. If posting it doesn’t work, let me know. Are you trying to include a link or attachment?

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I had originally typed the story in Gmail and after I passed it through an HTML to Plain Text converter, it went through. Previously it would just sit and spin after clicking submit.

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You find a good, experienced ortho doc. Don't settle for anything less. You've suffered enough!❤

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My situation is very similar. PT does seem to help. Yet trying to do more PT at home is ok as long as I don’t try to do to much. Right now I’m trying to balance my day with moving and resting. I am scheduled for an injection next week. I’m really hoping it helps. My case is complex as yours so could end up finding more reasons for pain. However I try to keep it in the back of my mind that I’m 78 years old. Maybe I should realize the body is just wearing out. Nothing lasts forever. Just keep pushing through my days and trying the best I can to make it. I’m not sure what happens next. 😊

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I 've had left buttock pain but mostly when sitting too long and/or sitting on a soft chair. I do better on a hard surface. As far as driving, I use a cushion that is attached to a very small compressor that inflates and deflates the cushion periodically. I always use this while driving. It was designed for pilost and truckers. This has been a lifesaver for me.

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This is EXACTLY how my Fibromyalgia started about 20 years ago. It started in my buttocks. Neck and shoulders were next. Then thighs. Extremely painful. I had a doctor that recognized the symptoms and we started working together. Unfortunately he passed away. Your chronic fatigue is another giveaway.
I have the same issues with my spine as well… but maybe did not 20 years ago. Find a doctor that can help you before starting injections. Mayo Clinic has a Fibromyalgia program that ma be helpful. I am making an apt. With a rheumatologist.

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@collageartist

This is EXACTLY how my Fibromyalgia started about 20 years ago. It started in my buttocks. Neck and shoulders were next. Then thighs. Extremely painful. I had a doctor that recognized the symptoms and we started working together. Unfortunately he passed away. Your chronic fatigue is another giveaway.
I have the same issues with my spine as well… but maybe did not 20 years ago. Find a doctor that can help you before starting injections. Mayo Clinic has a Fibromyalgia program that ma be helpful. I am making an apt. With a rheumatologist.

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Can you describe the buttock pain you experienced? I really don't feel terribly fatigued anymore, now that the neck issue has gone away. I really only escape to bed just to get away from the discomfort of sitting. I feel like I am fatigued from the stress of not being able to sit comfortably, more than just being fatigued, if that makes sense. Getting into a rheumatologist in my area is nearly impossible.

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It is a difficult pain to explain. But, I sat with a pillow and sat on one side. Whenever I have a flare my buttocks hurt first and then my thighs hurt. Then my body…ugh.
Cymbalta is helping me, but I can still flare. When my spine is bad I use hydrocodone.

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@collageartist

It is a difficult pain to explain. But, I sat with a pillow and sat on one side. Whenever I have a flare my buttocks hurt first and then my thighs hurt. Then my body…ugh.
Cymbalta is helping me, but I can still flare. When my spine is bad I use hydrocodone.

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Your problems sound so similar to mine, so sorry you’re going through this. I have pain in my neck as well as lumbar. Try to focus on the worst pain first and go from there.
I had a steroid injection and diagnostic numbing in my L5-S1 a few weeks ago, which stopped the pain for a few hours. This may be helpful for you, since you have problems in a few areas, like I do.
They’re recommending an ablation next. My neurosurgeon said he will do a minimally invasive fusion if that doesn’t work, which I’m leaning toward. I’m just so tired of hurting, and losing my quality of life. I wish you a resolution to your pain, don’t give up advocating for yourself. It’s not mental, I think they get that backwards. I get depressed because of the chronic pain.

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I suffered horribly for 4 years with pain in my right buttock. I kept thinking it had to be something in my hip causing the problem. I, like you, only found relief by laying down and I was actually able to sit som. As soon as I got up and tried to walk, I waould be in horrible pain. I was also exhausted and sometimes went to bed as early as 7:30 pm. I had had several MRIs because I have multiple sclerosis. My neurologist had mentioned to me that my lower lumbar area didn’t look quite right. I eventually saw an orthopedic doctor who said my pain problem was not due to my hip but was being caused by my lumbar area. I was referred to a neurosurgeon and surgery was done. Turns out I have severe degenerative disc disease and the disc between L5-S1 was basically nonexistent. Every time I would stand up the bones slipped forward and put pressure in my L5 nerve roots. You might want to consult with a neurosurgeon and see if he/she can see anything on your MRI that might indicate nerve involvement.

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