Hi all, been dealing with tailbone pain for about 3 years now. Have been a plethora of doctors who have tried different things but nothing helps. Latest I had a ganglion impar shot that did nothing for the pain. This doctor said there's nothing more he can do and other doctors keep passing me around. I don't want my coccyx removed because recovery is brutal and the likelihood that I'll get relief is extremely poor.I asked about pain management and they all shy away from pills and say get a medical Marijuana card or do cbd. I've tried cbd and I have to take high amount of it which makes me feel sick.
I'm literally at my wits end. I have chronic pain daily and no one is willing to help me manage it. I don't understand why none wants to help me. Has anyone been in this position and found someone who helped? They all start out gun hoe and positive until I tell them what I've done then it's there's the door and I can't help. I don't know how much more of this I can take. Thanks.
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CAT1866
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Hi, I've only just seen your post . I don't know if what I had was the same as you, my gp called it coccyxidinia or inflamed coccyx. I tried painkillers, couldnt sit down without terrible pain. I was sent to physiotherapy and was seen 3 times by different physios who couldnt get rid of the pain. I was finally asked if I would accept invasive physio by a specialist physio and I said ofcourse, anything to get rid of pain. A week later I had it and was told how I could carry on doing it.. well it worked straight away. I went from being in agony for 3 months to pain free. I dont know if this will help you. If you want to know what it involved, please private message me.
I haven't heard of "invasive physio by a specialist physio". I'm suffering of PFD that is worse around coccyx for three years. Seen all doctors and had PFPT for over a year with some help, still can't sit.
Can you please tell about invasive physio and what kind of specialist is this specialist physio.
Thanks for your reply. I have the same thing but after xrys/mri they see my coxxyx is fused to my sacrum. Which lucky me is very rare. I do go to PT for internal work so not sure if it's the same thing you did. Will reach out to, thanks!
Sorry to hear you're in pain. I have quite the same situation.
Don't even think about having your coccyx removed. It's a horrible operation and most often only worsens things for the rest of your life.
Have you been to pelvic floor PT? I have taken pfpt for over a year and it has helped a little. Still not able to sit. When I just lie in bed the pain is somewhat tolerable.
What pain medication are you having? I have taken tramadol for three years, which naturally isn't healthy but it helps a little. I think you should find a pain specialist. In Europe, they are anesthesiologists who specialize in pain management. There are a lot of medicines to help chronic pain. Unfortunately they all come with more a less serious side effects, but a pain specialist should find something helpful.
If I was offered medical marijuana I would cladly accept is. CBD is like air to me, no use.
Hi, yes, been doing PT for the last couple of years. Have gone to so called pain specialists and no one wants to give me pain meds. I'm thinking of seeing another pain management doctor but a nurse at my last appt said after the Oxytocin mess doctors are hesitant now to prescribe anything. Other than that I take a compounded suppository at night which does help.
Maybe taking some Amytriptyline at bedtime along with using the suppository will help. What’s in your suppository?
Have you been offered a floroscopy guided pudendal nerve block into your sacrotuberus and sacrosphinous ligaments in your buttock? The doc needs to use both anesthesia and 30 mg steroid.
It could be pudendal neuralgia you are suffering from. Keep me posted. I feel for you.
Hi, had 2 lumbar injections, one Ganglion Impar block that didn't work but most likely because they couldn't get to the exact area they needed to because of my fused coccyx. On the books to try again in Jan but PT said another patient of hers is going to try a Hypogastric Plexus block as that also affects the tailbone. I have asked my doctor about that. I just find it hard to believe I'm suffering for years because of this. Many times I've cried because of the chronic pain. I feel like I'm at the end of my rope.
I totally understand how you feel. I felt that way for over 12 years being kept poly drugged and sedated and left mostly in bed lying down. I was 51 when my journey with neuralgia began.
We are led to believe that doctors can help us and it’s a fallacy. We know our bodies better than they do. I find more and more doctors are gas lighting people and they are leaving patients undiagnosed and in pain.
Don’t give up. I’d try the hypogastric plexus block if you can get one done properly. Then I’d try a guided pudendal nerve block.
Hi, have you tried Dr. Foye at Rutger's University? He wrote the book on tailbone pain, and does x-rays differently than other doctors. I got the ganglion impar shot also. It didn't help too much, but he was very helpful and responsive. It truly seemed like he wanted to help as much as possible, and I appreciated that...
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