Pain in the butt - Can't sit down
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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l@shaytsadik, Good afternoon. I think first you need a three breath hug. I am sending one your way...... You are so very young to have your life so filled with those very negative sensations we call pain. I am 77 and have had it all (13 orthopedic surgeries) and also tried it all.
My routine is quite simple now....Myofascial Release Therapy (MFR) and medical cannabis. Just those two things plus a loving and caring life partner. Throw in my swing at the river and the songs from birds overhead and I am content for a little while. There are such wonderful folks in the Mayo Connect volunteer mentors. Hang in there .....they will give you their best efforts. Chris
@ecalderman
Your situation sounds very much like mine. You probably don't have the same thing but it would be worth asking your doctor about. I can't sit on my right butt cheek and it's quickly spreading into my left side. It comes up from the bottom of both butt cheeks. I was told that it's part of the pudendal (sp?) nerve. Is that what you're experiencing? Have you ever had a pudendal nerve block? My diagnosis is Tarlov cysts (perinerual cysts). They come out of the spinal cord and are innervated so they cannot be removed. There is a surgery available for them though. They drain the CSF out of them and fill them with another substance. There are only a few doctors in the U.S. that specialize in these.
Tarlov cysts are considered an incidental finding on MRIs, CTs, etc. The radiologist may or may not even document them. It has taken me 16 years to find a doctor that questioned what was seen on my MRI. The cysts were present back in 2003 after my accident. I've found that most doctors won't even acknowledge them and say they don't cause any issues. When they grow bigger they DO cause issues. Most times they are in the sacral area and push on the nerves at the end of the spinal cord and cause cauda equina syndrome.Do you have any of the cauda equina symptoms? It would be a really good idea to request all of your images on discs and the reports that go with them. From now on when you go in for any kind of imaging ask for a disk and that a copy of the report be mailed to you. They will give you a disc before you leave. Read through all of your reports and ask about the things you aren't familiar with. Also, I've found that talking to the tech. that asks you all the questions before your scan helps. Tell them you want all incidental findings documented because they haven't been able to pinpoint exactly what is causing your issue. That's what I had to do anyway.
I hope you find out what the problem is. I absolutely understand the agony that comes with not being able to sit! Best of luck to you:)
@shaytsadik @qball2019 Chris mentioned myofascial release therapy, and I would also recommend it and it has helped me a lot. It is physical therapy and can help a lot of conditions where nerves are compressed by tight tissues, and it can help pundental nerve issues. We have a discussion with a lot of information and links to videos with John Barnes where he explains the process. The pelvis can twist out of shape and cause nerve compression and pain to the legs. Here are 2 links to explore. The other link is displayed below the video.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Lumbo Sacral Decompression video with John Barnes
https://trainingandrehabilitation.com/identify-treat-lumbar-plexus-compression-syndrome-lpcs/
Like Chris, I have found MFR to be a blessing regarding help in the PN in my feet and chins. With 2 sessions I had very little numbness, pins and needles etc. I’m on therapy number 6 and my therapist had found several areas where I had back surgery that she is working on, loosening the fascia to keep the pain at bay. It might take several treatments, but if you stick with it, and be constant on self treatment, hopefully this can make an improvement.
Good luck. Mitch
My pain started in the butt crack.It feels like hot pokers. A pain specialist. Injected cortisone in it. It made it totally intolerable. I'm currently taking Gabepentin 300 mg three times daily. It helps a lot but I'm still in pain. I get relief laying on my sides.
@russy it could be compression on a nerve is causing the pain. Does stretching, exercise (possibly including Kegels - especially while seated) or other supplements (like turmeric, hemp seed oil) cut the pain in addition to Gabapantin?
I haven't tried anything other than the medication. Per your suggestion I tried the kegals exercise and it makes it worse. Does the turmeric supplement come I various strengths? I may try that.
@russy there are various turmeric capsules available. I use youtheory brand extra strength available at Costco or on Amazon. You may want to seek out a physical therapist who does pelvic floor rehabilitation. They might have suggestions that help you.
Hello, wow so much info to read and understand. The awesome info you wrote does it apply to rectal pain? I have had this pain 24/7 365 for over 7 years and have doctors say its levator ani syndrome to bursitus. The pain is always on the left side. The latest doctor in charge of the pelvic dept said it was bursitus located behind a lot of nerves
She said it's not curable and not one surgeon would operate becsuse the procedue has a very high chance of creating incontinence. I'm still seeking answers. Do u have any advice. Thank you.
@tjp4 There is also a pudendal nerve entrapment post and I'm going to reproduce a post from that. I've had sitting pain and it got a lot better with the following. My doctor thought I had ischeal bursitis at first and after two years when a bunch of myofascial pain and stiffness mostly resolved he though it was some type of myofascial pain syndrome. The idea is, tight myofascial tissue may be compressing your nerves, creating pain - especially when sitting. Also, consider looking for a physical therapist who specializes in pelvic floor rehabilitation. In some cases, this my involve treating internal trigger points and this has been described in the book "a headache in the Pelvis" by Wise and Anderson. Did the doctors talk to you about trigger point therapy and since you've been diagnosed with Levator ani syndrome did they suggest seeing a pelvic floor specialist? They might be able to do something about your condition. If untreated, these things seem to be able to go on and on, I believe. With treatment, they can often be made better.
Here was a recent post from me from the Pudendal nerve entrapment post: There were many suggestions for coping with sitting pain in old threads, above (in pudendal nerve entrapment thread). Mine has gotten much better thanks to stretching, exercise, MFR and I found a therapist that used intense ultrasound while he does active release stretching. Recently, I've started taking some enzymes (serrapeptidase (biomedic labs) and Nattokinase (Doctor's best); both from Amazon) and these helped immensely. I believe these help the tissue remodel (compression from MFR isn't the only way to remodel the fascia – electrical (galvanic) stimulation, ultrasound, stretching, exercise can assist this process, too). However, I had a lot of stiffness and I do believe it is from deposits of fibrin in muscles, on nerves, on bursa, etc. My pain level (and stiffness) is way down after taking the enzymes I mentioned (on an empty stomach). If you are not on blood thinning medication already, it might be worth a try. That seems to be the contraindication. Also, for some reason 10-15% of Especially if you have stiffness, too. I believe that now I am mostly dealing with healing of tendons that attach to the ischeal tuberosities – hence I have some small sitting pain (which has been getting better over time). Here is a review I wrote for an enzyme product on Amazon:
Long story short I was having some myofascial pain (stiffness, sitting pain) in the legs, glutes, lower back. It’s been getting better thanks to various supplements (especailly Vitamin C with citrus bioflavinoids, quercetin / resveratrol, stretching and exercise). I also had plantar fasciitis in the feet in the past as well as some sciatica symptoms (which is due to some type of nerve compression / irritation somewhere along the nerve).
This helped along with taking nattokinase (2000 U) and I worked my way up to 2 tablets of the Serrapeptase 3 times daily (one dose with the Nattokinase) Eventually, I’ll cut back to a maintenance dose and maybe use just 1 of the 80,000 U serrapeptase and 2000 U nattokinase.
While speculative, deposits of fibrin may be the culprit in causing tissue stiffness and improper tissue remodeling as you age. This may accompany (or possibly cause) conditions like plantar fasciitis, phlebitis (and some leg swelling), stiffening of the tissue – all things I am encountering. I noticed a decrease in sitting pain (i.e. less glute stiffness) right away within about four days of starting serrapeptase. On higher doses, I occasionally felt tingling in my feet while walking – but not in a painful way. More like the itching a healing wound might have. I had some areas near the ischial tuberosities that had dense areas that possibly were scar tissue-like (many years of martial arts with kicks, plyometric moves, hard landings probably contributed with this as well as possibly abnormal amounts of fibrin that were deposited on top of that as I aged – that was suggested to me by an injury massage therapist who specializes in aging athletes). Over several weeks, these became smoother and less ropey feeling. Prior massages including aggressive trigger point massage could not remove this / smooth this out. I’ve done all kinds of stretching, exercise and massage. These enzymes have been one of the most effective treatments in healing what I’ve got. Once I started on these enzymes I could feel the difference within a couple weeks. I could see some more recent scars that I have that were raised up appear flatter and remodel.
I generally research what I take and also read all the reviews from people taking these products and also scholarly articles. Based on what I’ve read, (and this is speculative – I can not state any of this as a universal medical certainty) it is quite possible that Serrapeptase can assist tissue remodeling, help remove / minimize scars / adhesions / help break up cysts, etc., including those that may irritate nerves, too. For many people, poorer healing may accompany aging. I believe this enzyme helps healing. I had no gastric irritation from either the 80,000 U version of the 260,000 U version of the enzyme. I was not recompensed in any way for this review. At some point, I'll drop down to a lower maintenance dose with the 80,000 U tablets, I suppose. End of post.
These enzymes and the supplements I mentioned may be worth a try for anyone experiencing pain from nerve compression. The contraindications for the enzymes are if you are already on blood thinners or if they give you gastric irriation. I personally believe that, for me, these treatments needed to be done together. That is, upon using the enzymes suddenly the stretching and exercise really made a much more rapid breakthrough (although the vitamin C and other supplements were helping - but it was slow). Maybe you'll make a breakthrough. I just took a 12 hour flight and only used 1 extra thin cushion and was relatively comfortable. For me, that's way better than it had been.
Also, you can search online for terms involving levator ani and such as: "internal trigger point release for levator ani syndrome" or "Levator ani treatment", etc. A Pelvic floor specialist (a phyisical therapist) should be able to help you, I should think. Good luck.