Weird symptom never resolved

[Victoria1234]

Ok so I've had this issue as far back as I can recall. Used to happen quite often, once or twice per week. Now it's once or twice per month. Doctors never ever have a clue, and I've been to a bunch, including physical therapy for many months. So it's pain right on/in my tailbone. The kind of pain that makes me cry it hurts so much. I can sense it coming on, sort of like an aura, for several minutes. Then it's full blast pain. It will quite obviously wake me up. Happens whether or not I have gone to the bathroom successfully and any time of day. I have to either wait about 2 hours for it to go away on its own, Or sit on a heating pad and take 4 ibuprofen and have it go away in about 30 minutes. I had some pain meds left over from something else and they worked in about 15. I can stop myself from crying if I'm in public, like teaching, but it's hard. Anyway, seeing as we are such a diverse bunch here I was wondering if anyone had a clue. Thank you. Victoria 

[Victoria1234]

Sorry, can't recall if the frequency of it went down with going gluten-free. So many things in my life changed then!

[ironictruth]

Is this actually on your tailbone or radiating to it? I.e., do you feel it any lower? I ask because you make a point of referencing it is unchanged by bathroom habits so the location must have made you wonder. Is it always 2 hours or do you have shorter bouts (20 mins?)

[Victoria1234]

1 hour ago, ironictruth said:

Is this actually on your tailbone or radiating to it? I.e., do you feel it any lower? I ask because you make a point of referencing it is unchanged by bathroom habits so the location must have made you wonder. Is it always 2 hours or do you have shorter bouts (20 mins?)

It feels like it's directly on the bone. I think I usually control it with meds so I'm not sure if it could last, on its own without meds, for only twenty minutes. So curious as to what you are thinking!

[ironictruth]

I was thinking levator ani syndrome with pain in the coccygeal region. But even if this is the case, the  treatment would pretty much be what you're already doing.  

[Victoria1234]

48 minutes ago, ironictruth said:

I was thinking levator ani syndrome with pain in the coccygeal region. But even if this is the case, the  treatment would pretty much be what you're already doing.  

Thank you Ironic! This sounds exactly like what I have! Read up on it and says it can last longer in some cases, so it sounds like me. I already have chronic pelvic pain that came from nerve damage during my partial hysterectomy in 2008, so I'm surprised no doc related to that issued dx me. Thanks so very much. Victoria 

[ironictruth]

Yes, ask GI and OB about the possibility and see if they can offer any suggestions. 

Good luck! 

[Victoria1234]

3 hours ago, ironictruth said:

Yes, ask GI and OB about the possibility and see if they can offer any suggestions. 

Good luck! 

I shall, thanks again!