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've had pain in my butt/rectal area since 1981. I can sit down, but it's constantly painful. I've tried acupuncture, hypnosis, chronic pain specialists...none being successful. I even tried using a TENS unit down there for the past few weeks..but that didn't help either. I'm going to yet another physical therapist on Monday to see if she can help. I'' let you know is she can ease the pain.

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@rstollery This is a long post: I basically had a bursitis / tendonitis in the glute and high hamstring region. It was stubborn. The Doctor did think I had bursitis and perhaps a tendonitis, too. He said, “I do think you had some kind of myofascial pain syndrome”. Along with that was all kinds of myofascial tension. My Chiropractor said my tension was myofascial (piriformis trigger points / tension in glutes). This caused mostly sitting pain at one time.

Later, I got very stiiff, too, when standing and with continued sitting pain. It was a crushing and burning pain. If I was moving, the pain diminished somewhat.
With chronic pain you can also get central pain sensitization - where you feel it more intensely. The supplements like turmeric help ease this somewhat. While speculative, I believe my main issue was from excessive fibrin (i.e. the protein involved in blood clotting) on the bursa / tendons & nerves and in blood vessels (sort of like a phlebitis in the glute region; I’d had that in legs, too). . I had nerve pain (nerve compression; some type of myofascial pain in the glutes, and all manner of sitting pain), tight IT bands, tightness down into lower left ankle. Tight quads. I could actually sense tension in various nerve plexes's in my abdomen, too, including into the diaphragm. It's much better now but I still have minor issues. While speculative, the fibrin might cause not only stiffness but promotes inflammation as it naturally recruits white blood cells (granulocytes) that promote a mild autoimmune inflammation of the tissues. This is a natural process for fibrin- essentially what happens in a cut or wound - but it may be more prevalent for that process to go haywire - especially as we age. The enzymes (nattokinase / serrapeptidase / lumbrokinase) can help reverse this - a small amount is actually absorbed somehow. I had only marginal help from myofascial release therapy until I found the right combination of enzymes and supplements (including several doses of Vitamin C and quercetin (<500 mg/day) and resveratrol and turmeric (500-1000 mg /day Youtheory Extra strength). Then it went away rapidly – especially when I added the enzyme regimen, below.

I also had a prior history of plantar fascitis and also lower leg phlebitis (and pain when pressing on lower leg veins). This is all consistent with tissue stiffening. As you may be aware, many people are eventually put on anti-coagulants by Western medicine due to forming clots / fibrin deposition - which may be more common with age and improper healing / tissue remodeling. The enzymes and Vitamin C and stretching & exercise took care of much of it for me - I only have a little residual sitting pain now. I believe what I had could have led to many different issues including amyloid polyneuropathy (eventually) and possibly other related disorders (other neuropathies) - had I not intervened with the alternative treatments (I was getting burning and tingling down in my left foot - that is now lessened; it might have been sciatica). NSAID's don't help this and that is what Western medicine tries. The stiffness and irritation can definitely cause nerve compression and nerve irritation leading to burning pains, spasms, etc., and sitting pain.

The enzymes are taken on an empty stomach (i.e. between meals). About 10% of the people get digestive issues. Most people have no problems with the enzymes, though. I've been on them seven months with no issues at all. I can actually feel the tingling of healing in different areas. You'll need to listen to your body. I've used: 2000 U nattokinase (Drs. Best in both am and pm) as well as a couple Serrapeptidase (Biomedix Laboratories brand; several different strengths are available in the am and pm, too) from Amazon. Also, recently I’ve been using Lumbrokinase, too ( stronger enzyme; Drs. Best brand). Start slow and ramp your way up. See how it goes. My doctor checked and if you have a bleeding disorder or are already on anti-coagulants they might be counter indicated. Otherwise, barring you have a clotting disorder or if you have an infection (discontinue during an active infection; as infections are often walled off by fibrin). Many people use these without issue and my doctor found little information - but not much for adverse effects, either. Most likely, these enzymes are safer than Warfarin and other anti-coagulants.

I am convinced the enzymes and the other supplements I mentioned above helped "cure" me of my sitting pain which maps to the pudendal and other interconnected nerves, too. At least, that was my case. I am 100% convinced about my fibrin hypothesis - for me at least. Any manner of movement helps this by getting better blood flow. Myofascial massages (including myofascial by a Barnes trained person) did little until I was on the enzymes. I now mostly lift weights, do pilates, use a TRX suspension system (great for core strengthening) and use a vibration platform (that REALLY helps!) and do some stair climber. All these help loosen up my myofascial and nerve pain. I don't get much massage anymore. I'm finally feeling much better.

Two things really help my pain: I still need the set of supplements I’m on AS WELL AS the enzymes or I slip back into pain (minimally I have some type of sciatica pain / something like Cramping fasciculation syndrome with extreme stiffness anywhere below the lumbal region – and one of the other main symptoms is stiffness (which causes sitting pain and clamps on nerves causing burning / tingling pains down my legs). When I am on both regimens, I have virtually no pain. If you are able, perhaps try the regimen I detailed, above. Perhaps it might help you if this is the cause of your pain. In the meanwhile, you can try sitting on donut cushions like those used for hemorrhoids to ease ischial bursitis type pain. It will take time to reverse this, even if this is what ails you. Good luck, hope this helps.

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I have had terrible pain when sitting since I fractured my pelvis in numerous places (amd shattered my sacrum) in 2015. One fracture at the base of the left pelvic ring, near the ischial bursa, did not heal properly and I was left with nerve damage and a clump of excess bone callus in a virtually inoperable spot. Cortisone injections directly into that area and into the cluneal nerve sometimes helped a little for a short time. It’s been miserable. I sit on a heating pad or ice pack all the time. In the next few weeks I’m having a peripheral nerve stimulator (not a spinal cord stimulator) implanted that will block the pain from that area. I did a one-week trial with the device and it was miraculous. Can’t wait for the permanent implant. You might ask your doctor about peripheral nerve stimulators.

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Thank u I will ask him

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@schony1087

I had back surgery and ever since I have had severe pain in my buttocks, to the point of crying. It is a burning pain and I too have trouble sitting. Any suggestions would be helpful

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I have the same burning in my buttocks, sever burning in my torso. Seeing a neurologist, taking Naltrexone gradually increased from 1 mg to 5 mg. No change. I ice pack all the time. I think i could have Pudendal nerve compression. I have a lot of the symptoms. I am supposed to see a gyn who specialies i pelvic floor pain

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@wandasophia

I have the same burning in my buttocks, sever burning in my torso. Seeing a neurologist, taking Naltrexone gradually increased from 1 mg to 5 mg. No change. I ice pack all the time. I think i could have Pudendal nerve compression. I have a lot of the symptoms. I am supposed to see a gyn who specialies i pelvic floor pain

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@wandasophia Sounds familiar. Please see my comment above about the sitting pain and how I got rid of it (stretching/ exercise & dietary supplements). I am convinced I had some nerve compression / irritation issues that I minimized and hypertonic (tight) muscles galore. It’s much better now. Sometimes a deep ache or a crushing pain and other times burning Pain. It could be neuropathy or it can be myofascial pain too as the unmyelinated sensory fibers are common in the myofascial tissue, I think. PM me via e-mail if you want specifics on supplements. Either way, I think they help.

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@richman54660

@rstollery This is a long post: I basically had a bursitis / tendonitis in the glute and high hamstring region. It was stubborn. The Doctor did think I had bursitis and perhaps a tendonitis, too. He said, “I do think you had some kind of myofascial pain syndrome”. Along with that was all kinds of myofascial tension. My Chiropractor said my tension was myofascial (piriformis trigger points / tension in glutes). This caused mostly sitting pain at one time.

Later, I got very stiiff, too, when standing and with continued sitting pain. It was a crushing and burning pain. If I was moving, the pain diminished somewhat.
With chronic pain you can also get central pain sensitization - where you feel it more intensely. The supplements like turmeric help ease this somewhat. While speculative, I believe my main issue was from excessive fibrin (i.e. the protein involved in blood clotting) on the bursa / tendons & nerves and in blood vessels (sort of like a phlebitis in the glute region; I’d had that in legs, too). . I had nerve pain (nerve compression; some type of myofascial pain in the glutes, and all manner of sitting pain), tight IT bands, tightness down into lower left ankle. Tight quads. I could actually sense tension in various nerve plexes's in my abdomen, too, including into the diaphragm. It's much better now but I still have minor issues. While speculative, the fibrin might cause not only stiffness but promotes inflammation as it naturally recruits white blood cells (granulocytes) that promote a mild autoimmune inflammation of the tissues. This is a natural process for fibrin- essentially what happens in a cut or wound - but it may be more prevalent for that process to go haywire - especially as we age. The enzymes (nattokinase / serrapeptidase / lumbrokinase) can help reverse this - a small amount is actually absorbed somehow. I had only marginal help from myofascial release therapy until I found the right combination of enzymes and supplements (including several doses of Vitamin C and quercetin (<500 mg/day) and resveratrol and turmeric (500-1000 mg /day Youtheory Extra strength). Then it went away rapidly – especially when I added the enzyme regimen, below.

I also had a prior history of plantar fascitis and also lower leg phlebitis (and pain when pressing on lower leg veins). This is all consistent with tissue stiffening. As you may be aware, many people are eventually put on anti-coagulants by Western medicine due to forming clots / fibrin deposition - which may be more common with age and improper healing / tissue remodeling. The enzymes and Vitamin C and stretching & exercise took care of much of it for me - I only have a little residual sitting pain now. I believe what I had could have led to many different issues including amyloid polyneuropathy (eventually) and possibly other related disorders (other neuropathies) - had I not intervened with the alternative treatments (I was getting burning and tingling down in my left foot - that is now lessened; it might have been sciatica). NSAID's don't help this and that is what Western medicine tries. The stiffness and irritation can definitely cause nerve compression and nerve irritation leading to burning pains, spasms, etc., and sitting pain.

The enzymes are taken on an empty stomach (i.e. between meals). About 10% of the people get digestive issues. Most people have no problems with the enzymes, though. I've been on them seven months with no issues at all. I can actually feel the tingling of healing in different areas. You'll need to listen to your body. I've used: 2000 U nattokinase (Drs. Best in both am and pm) as well as a couple Serrapeptidase (Biomedix Laboratories brand; several different strengths are available in the am and pm, too) from Amazon. Also, recently I’ve been using Lumbrokinase, too ( stronger enzyme; Drs. Best brand). Start slow and ramp your way up. See how it goes. My doctor checked and if you have a bleeding disorder or are already on anti-coagulants they might be counter indicated. Otherwise, barring you have a clotting disorder or if you have an infection (discontinue during an active infection; as infections are often walled off by fibrin). Many people use these without issue and my doctor found little information - but not much for adverse effects, either. Most likely, these enzymes are safer than Warfarin and other anti-coagulants.

I am convinced the enzymes and the other supplements I mentioned above helped "cure" me of my sitting pain which maps to the pudendal and other interconnected nerves, too. At least, that was my case. I am 100% convinced about my fibrin hypothesis - for me at least. Any manner of movement helps this by getting better blood flow. Myofascial massages (including myofascial by a Barnes trained person) did little until I was on the enzymes. I now mostly lift weights, do pilates, use a TRX suspension system (great for core strengthening) and use a vibration platform (that REALLY helps!) and do some stair climber. All these help loosen up my myofascial and nerve pain. I don't get much massage anymore. I'm finally feeling much better.

Two things really help my pain: I still need the set of supplements I’m on AS WELL AS the enzymes or I slip back into pain (minimally I have some type of sciatica pain / something like Cramping fasciculation syndrome with extreme stiffness anywhere below the lumbal region – and one of the other main symptoms is stiffness (which causes sitting pain and clamps on nerves causing burning / tingling pains down my legs). When I am on both regimens, I have virtually no pain. If you are able, perhaps try the regimen I detailed, above. Perhaps it might help you if this is the cause of your pain. In the meanwhile, you can try sitting on donut cushions like those used for hemorrhoids to ease ischial bursitis type pain. It will take time to reverse this, even if this is what ails you. Good luck, hope this helps.

Jump to this post

Thanks @richman54660 for including all this information. I have a similar situation, burning pain when I sit and some pain in my left foot after laying down. An ultrasound showed tendonitis on upper hamstrings and some calcification of the tendons as well as thickening of the bursa sacs. This was after months of myofascial therapy from a pelvic floor specialist that didn't help. I recently had cortisone shots around both ischial tuberosity joints and I'm going to a new PT who is doing some "scraping" around the upper hamstring and stretching/strengthening exercises. My concerns about the enzymes and supplements are because I've been on warafin for over 10 years due to several blood clots in my left leg. I'll check with my PCP about using the enzymes as my current PT doesn't seem to be helping and I haven't noticed any difference after the shots. Turmeric is definitely a no-go with blood thinners but I also know that my dosage might be able to be changed. Any other suggestions are appreciated! Thanks again.

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I have had terrible pain in my pelvis since I suffered nerve damage from widespread fractures in 2015. Sitting has been impossible without a heating pad under me. My pain doctor tried everything but nothing worked. I now have a Stimwave peripheral nerve stimulator (PNS) that blocks the pain. It has saved my sanity. Other PNS devices are also available and covered by insurance for intractable pain that has not responded to other treatment. PNS devices are much less expensive than spinal cord stimulators and do NOT go into your spine. The wires are inserted along the nerves that serve the area where your pain is, and the stimulation blocks the pain signal. The battery is external and you can take it on and off. Look into it, discuss it with your doctor, and see if this might be a solution for you. It has made my life bearable again.

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@rstollery

I've had pain in my butt/rectal area since 1981. I can sit down, but it's constantly painful. I've tried acupuncture, hypnosis, chronic pain specialists...none being successful. I even tried using a TENS unit down there for the past few weeks..but that didn't help either. I'm going to yet another physical therapist on Monday to see if she can help. I'' let you know is she can ease the pain.

Jump to this post

I too have suffered with PNE. All the injections, nerve stim..didn't work and migrated one lead wire that embedded into my sacrum. Had the stim removed.
My most effective treatment was cryoablation with Dr. J. David Prologo, Emory Hospital Atlanta Georgia. You can Google, YouTube and research NIH.com.
But recently went on Lyrica. This calmed the buttock muscle spasms and hand tremors.
My new Neurogist explained it this way.
It's neuropathy! With all the issues that come with this and since Lyrica did help...it's neuropathy.
Maybe I had a mild case of shingles and it settled in my pelvis. Road a bike in 2009 and the pelvic floor pain was horrific. My Gyn did a hysterectomy...worse thing to have done to a PNE patient. Now I know☹️
I'm 67 now and manage as well as I can. Determined not to let this disrupt my life, is my daily prayer.

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@dayletriay53

I too have suffered with PNE. All the injections, nerve stim..didn't work and migrated one lead wire that embedded into my sacrum. Had the stim removed.
My most effective treatment was cryoablation with Dr. J. David Prologo, Emory Hospital Atlanta Georgia. You can Google, YouTube and research NIH.com.
But recently went on Lyrica. This calmed the buttock muscle spasms and hand tremors.
My new Neurogist explained it this way.
It's neuropathy! With all the issues that come with this and since Lyrica did help...it's neuropathy.
Maybe I had a mild case of shingles and it settled in my pelvis. Road a bike in 2009 and the pelvic floor pain was horrific. My Gyn did a hysterectomy...worse thing to have done to a PNE patient. Now I know☹️
I'm 67 now and manage as well as I can. Determined not to let this disrupt my life, is my daily prayer.

Jump to this post

Hi dear..I got PNN about 8 weeks ago. Everyone's post are very discouraging, but I take one day at a time? This week I had a Pudendal Nerve Block under CT guidance, but did not help. Also had Ganglion APA or such nerve blocks..did not help.
Since your cryoablation...pls tell me what it has helped & I pray u r much better ! Thinking I MAY have a pinched off nerve from my horrible spine or from scar tissue. I have had 5 back surgeries & L1- 2 is horrible. It's nerves do go to the rectal area.
Prayers for us ALL. Stay strong. God is on our side, gang !!

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