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?

@richman54660

@vklittle61 jelizabeth @bkruppa You'll need to talk to Drs. about your specific cases. However, a lot of people on this forum keep talking about surgery. Surgery in that area can be very dangerous and often is avoided by the surgeons. A lot of this – including levator ani syndrome – was described in the book "a headache in the pelvis" (and other books about pelvic pain). It often is the result of subtle compression on nerves (which can cause much and continuous pain) and can often be treated in other ways including stretching, relaxation techniques, exercise and trigger point release (internal and external). Please see my prior detailed posts and also read some of the books like that above and of the topic "healing pelvic pain". There is good chance this is a case of myofascial pain in the pelvis compressing nerves down there. Google how to treat myofascial pain. In the book it mentions many people have surgeries only to find out the original pain isn't fixed and they have new issues. If I'm right, It is likely you'll find the most help from physical therapists and other therapists of that nature and not as much help from most medical doctors as they are notoriously unaware about myofascial pain. You may want to keep trying to get an actual diagnosis from a medical doctor – but they're often guessing based on pain patterns (as discussed in the books, above, especially "a headache in the Pelvis" by Wise and Anderson). Tension in the tuberosities (like I have) is generally considered myofascial pain. How best to treat it and what is driving it – who knows? That being said, good luck.

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@richman54660 @vklittle61 @jelizabeth @bkruppa I posted a lot of information about myofascial release and what it can do in another discussion. It's cross listed under the Bone, Joint Muscle Group and Neuropathy. This is a way to treat tight tissue and nerve entrapment without surgery all over the body. Here's a link
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
I've also checked out the pelvic book you talk about and that looks like good information too. My physical therapist has talked abut all of this.

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@bkruppa

With as many doctors that we have been to ALL just want to prescribe meds to cover up the pain. When I ask or suggest possible causes like PNE, scar tissue entrapment, etc. they don't seem to know what I am talking about. As for surgery it appears that given that the pudendal nerve is so complex no doctor even wants to talk about this as a cure. I agree. In looking at photos of this nerve it is a multifunction nerve and while it goes to three specific places in the pelvic floor region there are offshoots that go all over the place so it is very complex. Surgery gone wrong could produce even more issues with the patient.

We have tried the massaging techniques in the above referenced books which helps some but nothing has been permanent. We've also gone to experts in this field and again while it has helped the pain eventually comes back. From what I've read it takes a very long time to permanently stretch a muscle so maybe we just haven't gone through these procedures long enough.

What is interesting is that there are times where my wife's pain is so low that she doesn't have to take any pain meds at all. Then the pain returns. We've tried to go back through the previous day/days to see what she did differently but can never come up with a reason for these low pain episodes. I would like to know if any of you have experienced the same variation of pain levels be it daily, weekly, monthly, etc.? I think this is a good clue for finding the source of the pain but we just haven't been able to tie it to anything she did or ate.

To those who have these issues the first thing I would recommend is to determine if the nerve is damaged or entrapped. If damaged research seems to say this is permanent and there is no known cure. I was told by a doctor at Mayo that if the pain intensity is constant all the time then the nerve is probably damaged. If the pain can vary either throughout the day or from day to day then the nerve probably is not damaged. In this case I would say the nerve is entrapped and then the above massaging techniques will be the path to follow for relief and/or cure. The other suspect area is at the pudendal nerve root which is at the spinal column. If there is inflammation at this point this could be the source of pain issues. One neuro doctor wanted to inject a steroid to reduce the inflammation. However, this would be an ongoing treatment and I would prefer to determine why there is inflammation there in the first place. This kind of treatment is somewhat common but as with any procedures on the spine it does have risks. We did not opt for this procedure.

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@bkruppa I mentioned this already. The single biggest thing that helped my pain and tension (I still have some sitting pain) was finding a therapist who does what is called "injury massage". He uses intense ultrasound while stretching you. He went up and down my legs, thighs and lower back. It took several 1 hour sessions and it's an expensive out of pocket deal. He thinks he's really "remodeling" the tissue. He also says if the pain varies and changes with time, it's not structural (i.e. not ligaments/bones, etc.). For me it's nerve compression from my myofascia/muscles (soft tissue) due to overuse/martial arts breakfalls ("scar tissue"), etc. He got rid of all the muscle knots in the lower legs. Regular massage won't change that – although as @jenniferhunter said myofascial release helped me (yes I had a John Barnes trained guy) but I had trigger points across whole regions – so the ultrasound really helped the most the quickest.

Some chiropractors have a high frequency vibrator called an RRT (rapid release). These might work well if the tension is close to the surface. Many have lasers and some have electrical stimulation, too (and you can do some TENS/EMS, too, yourself as you can buy those on Amazon). I am concerned chiropractors like to do their "adjustments". I don't particularly need or want the adjustment – especially since two discs are desiccated and bulging. I just like their other tools. Chiropractors often have the stuff.
Last, try an inversion table (talk to your Dr. about that – if the spine is too deteriorated or if high blood pressure it's not good). You don't spend a lot of time doing it – just a little – perhaps twice per day. That can take the pressure off the spinal nerve. I'm pretty sure that is what is causing my pain and tension (when I had it) – a pinched spinal nerve due to lower lumbar DDD. A pinched nerve can affect everything below it. pain, Sciatic pain, sitting pain, excessive sweating, affects the bowels (IBS like symptoms), etc. (they mention that in the headache in the pelvis book, too). However, more aggressive stretching and other exercises, too, that I detailed before are doing the trick for me. Keep trying different types of massage. You may not fully cure this but you might make it better. Stretches, vigorous walking, if tolerated, any other good exercises that are tolerated (I like TRX suspension training core exercises and lower body – TRX is the best for core strengthing I have found (no back aches since Christmas when I started TRX)) and extremely deep inspirations (lumbar nerve plexus runs through there and can not only cause pain but tension in the diaphragm) , try anti-inflammatory supplements (resveratrol + quercetin + rutin + turmeric in modest doses). It should help.

One more good book to read is "life after pain" by Dr. Jonathan Kuttner. He mentions chronic pain as well as meditation / mindful techniques. Also, maybe it won't help your wife – but try the deep breathing – really deep inspirations when you need it. Almost to the point of hyperventilating. That really helped me – but I had chains of trigger points and tension up and down my body and it wreaked havok. Often, when we are in pain, we tense up our muscles and don't breathe right. I'm trying to avoid drugs and injections for as long as possible. If massage works, try and find therapists / chiropractors with different tools and try them out. Some are reasonably priced and / or might be covered by insurance.

Liked by Jennifer Hunter

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@richman54660 @bkruppa That's a lot of good information. My physical therapist has all the same "stuff" and she has used cold laser, ultrasound, and a Dolphin Neurostimulator (Blocks nerve pain impulses) on me. She also has an "Arc Barrel" which is a curved padded thing to stretch on; like as if you sliced a piece off the side of a cylinder and laid it on the ground. I had a few sessions where I laid across that and she also did her myofascial release at the same time. When you add your body's stretch, it's like having another pair of hands working on you. The key to remodeling the fascia is to be gentle enough so the body adapts, because aggressive work brings on the body's response to protect by adding more guarding and tension, and if stretched to the point where the fascia will tear, you've just created scar tissue that will add to the problem. My PT also has a "Power Plate" which is a vibrating platform that you can stand on, lay on, etc, and it comes with a cushion that matches the height, so you can have part of your body on the cushion, and part on the plate. That is good for when you want the vibrations on just the legs/arms, etc, and not on the entire body. This does get the fascia moving from vibration. If you stand on this, you'll feel the vibration up through your head an neck as well which I don't want to do, but prefer using it with the cushion. You can also stretch on it with normal muscle stretches and add the vibration into that to get the fascia moving sooner.

I agree that a chiropractic adjustment isn't a good idea if you have a bulging spinal disc. When you have damage to a disc, the fibrous outer layer develops small cracks. With aging, discs dry out and shrink a bit, which helps the cracks open up a bit, and it doesn't take much to cause the fissures to open and release the jelly like nucleus inside the disk. All I had to do was turn my head, and the cracks opened squeezing out the jelly. Then because of the uneven pressures on a disc that lost it's shock absorbing jelly, over a couple years, my spine attempted to stabilize itself by growing bone spurs. All of that was eventually pressing on my spinal cord and required surgery. Another problem can be spinal instability and having one vertebrae slip past another because the disc isn't preventing the abnormal movement. Keeping good muscle core strength will help stabilize the spine. These issues would also be the reason that imaging is important before anyone does any physical manipulation on your neck or spine. If a person has instability in the cervical spine near the skull, the potential for serious injury and paralysis exists. As patients, we should ask questions and require imaging and evaluations before any physical therapy or manipulation. Your provider should be taking these safeguards, but as the patient, the ultimate watch dog is us, and we need to speak up, and be ready to stop and re-evaluate our safety, and get other opinions, etc.

Liked by Lisa Lucier

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@dailypain @vklittle61 Hello, I just came across this page via a google search for "sitting pain". I have the same problem and it has been going on for 9 years now (I'm 31 years old). It hurts to sit and it can be unbearable at times. The pain is bilateral and started at my sit bone and now radiates down my hamstrings. I've been to multiple doctors, tried physical therapy, etc. Recently I had an MRI of my hips and the doctor found a torn labrum on each of my hips along with bilateral femoro-acetabular impingement (FAI). I had surgery this month to fix the right labral tear. I'll try to keep you updated to let you know if this helps. To everyone else, thanks for the info. I need a few months to rehab from my surgery and hopefully the pain goes away. If it doesn't I will have to try some of the other things mentioned here.

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@vklittle61

I’ve had a pelvic mri

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Have you requested your records so you can read your radiology report? See if it says anything about any "incidental findings" of Tarlov cysts. They are also called perineural cysts. I've been a "chronic pain patient" for 15 years (since my accident) and am finally finding out that I've had these cysts the whole time. There seem to be a lot of "incidental findings"! Anyway, these cysts basically bulge from the nerve root sleeves that exit the vertebrae and cause a multitude of symptoms. Rarely does a doctor even acknowledge them because they are "incidental findings" and they weren't taught any more than that about Tarlov cysts in medical school. You will need to mention them to your doctor or even have him/her pull your pelvic MRI up to see if you have them. Radiologist may or may not even document them, I guess it's their choice.

I have the same "pain in the butt" that others have described on here. I know exactly the kind of pain you're talking about because I have it in both. I can't even put any pressure on my right butt cheek. It feels like there are hard balls of muscle/nerves in there and the pain is crazy. That nerve pain then spreads down my leg and into my feet. I now have peripheral neuropathy because of this. These cysts, when big enough, push on your sacral nerves causing cauda equina syndrome. For more info. look up Tarlov Cyst Foundation.

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@ecalderman

Sounds awful! My pain is right on my sitz bones – it’s very precise and the MRIs haven’t shown any breaks or disc issues. I think it might be nerves but can’t seem to find a way to identify it.

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I have spinal stenosis.Foot drop dead nerve L5. Can't sit, read standing. Have to travel by plane. How will I sit??

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@12251948

I have spinal stenosis.Foot drop dead nerve L5. Can't sit, read standing. Have to travel by plane. How will I sit??

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@12251948 you can buy a vive inflatable tailbone cushion on amazon if getting the tuberosities off the chair helps. You can conveniently carry it in a grocery store bag (I bought some black poly bags on amazon) so it looks like any carryon bag. The vive is adjustable since it is inflatable. I used to use that when my pain was worse. I had several posts above where I described what I did that helped me over time to get rid of /lessen my sit pain.

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@qball2019

Have you requested your records so you can read your radiology report? See if it says anything about any "incidental findings" of Tarlov cysts. They are also called perineural cysts. I've been a "chronic pain patient" for 15 years (since my accident) and am finally finding out that I've had these cysts the whole time. There seem to be a lot of "incidental findings"! Anyway, these cysts basically bulge from the nerve root sleeves that exit the vertebrae and cause a multitude of symptoms. Rarely does a doctor even acknowledge them because they are "incidental findings" and they weren't taught any more than that about Tarlov cysts in medical school. You will need to mention them to your doctor or even have him/her pull your pelvic MRI up to see if you have them. Radiologist may or may not even document them, I guess it's their choice.

I have the same "pain in the butt" that others have described on here. I know exactly the kind of pain you're talking about because I have it in both. I can't even put any pressure on my right butt cheek. It feels like there are hard balls of muscle/nerves in there and the pain is crazy. That nerve pain then spreads down my leg and into my feet. I now have peripheral neuropathy because of this. These cysts, when big enough, push on your sacral nerves causing cauda equina syndrome. For more info. look up Tarlov Cyst Foundation.

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@qball2019 yes. I had the exact same thing. I’m going to be highly speculative, below. Briefly, this sit pain is a weird intersection of nerve compression, aging metabolism and poor wound healing I think.

One can’t know for sure but the sit pain is probably one of three things: 1. bursitis from tension. With bursitis comes intense pain that is 100% contact pain. Standing good. No pain. Sitting = excruciating pain. 2. It can also possibly be abnormal scar tissue /adhesions. Slow trigger point massage /myofascial release like @jenniferhunter mentions might help this. 3. There is also the possibility that bursa fluid has crystallized. I had the feeling like I had an ice pack under my skin. Again, slow trigger point massage (rolling on balls/Rollga , etc., Myofascial release) can help. The irony is that involves contact and pressure which can cause some pain. However, you might want to work the adjacent areas as they are referring the pain and tension to the ischeal tyberosities. Going back to #2, the hard tissue in those adhesions can be fibrin deposits (as in what is in you cloys). As we get old wounds don’t necessarily heal the same. I think citrus bioflavonoids with vitamin c especially and other plant supplements might help actually dissolve those fibrin deposits. Also , I take turmeric, rutin (low dose!) quercetin, resveratrol) and supplements that help mobilize fat rather than sugar (ie citrulline maleate and carnitine) might help (burn sugar = lactic acid buildup). To some extent the Myofascial tension might be a metabolic issue associated with aging, too.

My blood pressure went down and my triglycerides went from high to normal levels with those supplements and I think they mostly cut some of my nerve pain (except citrus bioflavonoids slightly increase my nerve pain but I think they help me heal the abnormal tissue). It has softened up considerably since I started them. It could take several months. Discontinue those when the scar tissue remodels. Keep the other supplements. Monitor blood pressure while taking supplements or natural pain supplements, too. Some raise it, most lower it.

Cure the root cause though which is the Myofascial tension. Stretching, rolling, exercise I mentioned in earlier posts and the supplements above really did it for me. I also use a wall hugger model of lazy boy. Easier on the back and bottom and you can get to zero gravity and sit comfortably.

My sit pain is almost all gone. I had chains of trigger points and tension all up and down my legs (quads, IT band, hamstrings and glutes) which can cause pain as well as bursitis. It took me two years of hard work and a lot of experimentation. Again, see my several prior posts in this thread.

I would guess those are not Tarkov cysts at you tuberosities. Either scar tissue or bursa. However, nerve compression causes the tension which may drive bursitis or scar tissue formation. For me it is DDD and tight Myofascial tissue near the sciatic nerve that drove the tension and pain I think. Get rid of the tension, the other issues should get better. Also, no one can count on therapists to do it all for you. You need to do whatever you can for yourself every day to get better. Good luck.

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Hamstrings which have been even slightly injured can cause a "pain in the butt". That is exactly how medical literature describes it. Not sure if your images were from x-Ray, which would not show ti, or from an mri, which would show it. These are quad muscles that insert high up in the back of your thighs, right by your butt. Hope this helps.

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I slipped and come crashing down on my sacrum/coccyx 5 months ago. no fracture but pain when I sit for any time is excruciating. Fine standing or lying. But sitting upright on a chair at church or concert, pain becomes excruciating, radiating out in all directions. So little improvement over 5 months. Only had an exray. Did I briuse my sacrum? Crushed some nerves? What could it be? what can be done ? What should I request be tested and how next?

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I have nerve pain in my butt. It is a burning sensation. I take Gabapentin 3 times a day.it helps but I can't seem to sit for very long, When it kicks in it hurts standing also.

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@jdiakiw

I slipped and come crashing down on my sacrum/coccyx 5 months ago. no fracture but pain when I sit for any time is excruciating. Fine standing or lying. But sitting upright on a chair at church or concert, pain becomes excruciating, radiating out in all directions. So little improvement over 5 months. Only had an exray. Did I briuse my sacrum? Crushed some nerves? What could it be? what can be done ? What should I request be tested and how next?

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@jdiakiw Welcome to connect we are,t Dr,s but help with what helps us As far as your cocyx or tailbone have you gone to your Dr? You probably need an X-ray to see if you chipped it or MRI, or if its just Is a bone bruise I would suggest you see your Dr One thing you can do is buy a special pillow it has a hole in it for your tailbone

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@russy

I have nerve pain in my butt. It is a burning sensation. I take Gabapentin 3 times a day.it helps but I can't seem to sit for very long, When it kicks in it hurts standing also.

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I have the same thing been going on for 14 months what have u done as far as tests , docs, etc

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Have you had ischial bursa injections? If the diagnosis is ischial bursitis, why not inject and see if it helps? I don't know if bursitis shows up on imaging. I've got pain in my tail bone. I go in for a caudal block tomorrow. Prior to that I had piriformis injections. That didn't help. They thought maybe it could be sciatica.

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@harleymama

Have you had ischial bursa injections? If the diagnosis is ischial bursitis, why not inject and see if it helps? I don't know if bursitis shows up on imaging. I've got pain in my tail bone. I go in for a caudal block tomorrow. Prior to that I had piriformis injections. That didn't help. They thought maybe it could be sciatica.

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I have not what kind of doc performs this

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