Ronee, USA - firstname.lastname@example.org
My tailbone pain began just hours after a highly regarded physical therapist, to which I presented with low back pain, performed a gentle manipulation at a coccygeal joint, thinking this area was the cause of the back pain. This was mid January 2018. I told her that the evening following the adjustment, I experienced pain when sitting, something I'd never experienced before. When this pain continued, and worsened, she said she could no longer help me, that I had reported that I had this problem when I walked in! I came in with one problem and, to my horror, left with two.
My primary care doctor prescribed Celebrex to lower inflammation, to help allow it to heal. 30% relief for a short while. I was told this will heal itself in time.
My ability to sit, with the help of a wedge cushion, was uneven, as was my ability to drive. Most often my husband drove me while I lay down in the car in awkward positions.
Pain management specialist took 4 laying down x-rays and reported no problems with coccyx.
Diclofenac gel was prescribed for a couple of weeks to lower the inflammation to allow it to heal-- I was to rub it into the area vigorously and let it air dry for ten minutes four times per day. It helped a bit for a week or so. The doctor suggested that this pain was part of my low back problem.
Cortisone shot between two joints on March 2nd. The swelling diminished considerably within a week to ten days, and has remained that way; however, I immediately started feeling a different kind of pain, which is where I am now (although not now always to the degree). I felt the bone itself, considerable throbbing, extremely painful. The nurse suggested it is part of my back problem and prescribed Percocet.
I began working with another physical therapist for my low back, someone very qualified. She could not figure out what p/t #1 had done, but continues to try to work around this. I need to get my low back strong and aligned. I position myself into a pretzel to avoid pain in the coccyx, exacerbating my low back problems. The exercises I need to do increase the pain at the tail, but as I get stronger, this seems to be getting less stressful on the area..
On March 22nd I was given an epidural for the low back which reduced the inflammation as hoped, but created no change in the coccyx. April 6th MRI of the coccyx came back with normal results. 'It's just coccydnia, it goes away in time. This is all part of your low back problem'. they say.
I digress for one moment. Many post that cortisone does not get to the root of the problem, nor fix it. Yes, of course. However, in my case it seemed a useful tool in order for me to do what I could to get to the next step. And, my research (hadn't found this website yet) showed that one must approach this problem as quickly as possible to avoid it becoming chronic. And other thought: what if the problem cannot be fixed? What do we do then?
Experience of coccyx pain since mid March when I felt the bone throbbing, etc.
I was walking with legs spread to avoid creating friction. My husband mostly driving me as I lay in the back. Trying to drive myself, I use the strength of my legs to lift me while I navigate the road. But basically I am homebound with small outings, most to doctors, with small fun experiences-- how much pain am I willing to experience in exchange for some fun? I tried walking, swimming. Felt great for my back and glorious for my psyche, but my coccyx was in agony. I love to move, it is my joy.
I kept pondering the relationship of the muscles to the tailbone. Maybe they have tightened up and that exacerbates the issues. What about manual physical therapy? I myself try to massage externally, loosening around the coccyx with my hands; stretching the groin (lay on the floor on the back, butt against the wall, and let your legs spread apart and relax); stretching all muscle groups I feel are tight; using a tennis ball, or two in a sock with a knot at the end, to lay on until I felt a release.
I remember telling my husband one day that the pain at the tailbone feels like raw nerve pain. Over the top. Who would believe one could have so much pain from such a tiny place in the body?
Pain at perineum and coccyx treatment with Dr. Foye (see Doctors and specialists in the USA, New Jersey)
Around this time, late March, I was experiencing symptoms of which I was only vaguely aware. I did not know what to make of them but assumed they were related to the tailbone pain. I was feeling a burning sensation at the labia, which, as the day progressed, then extended to a sensation of rigidity in the vaginal canal, stretched open, as well as burning. Walking was a nightmare again, as the friction exacerbated the pain. (This was later suggested as a possible muscle spasm by Dr. Foye.) I wondered whether perhaps it was allergy to soap? But it was not.
The pain management doctor realized I needed a ganglion impar when I was finally successful in getting him to understand my symptoms, the over the top nerve pain at the tip and moving inward and forward, and a drawing sensation. He led me to Dr. Foye in Newark, NJ. It was a Friday, and I got an appt. with Dr. Foye for the next Tuesday, May 8th. Wow. How refreshing to not have to wait and wait…. And hope! Having an ally makes such a difference.
For those who do not know, Dr. Foye has a relationship with Rutgers Medical School whereby he can focus exclusively on this part of the anatomy and provide the time and mode of care outlined by many others who have reported here. He was the first doctor I experienced who answered my questions, as I had speculated on many. And his kindness, breadth of knowledge, and ability to spend time with a patient goes not without gratitude.
So on that day, May 8th, Dr. Foye diagnosed me with a bone spur at the tip from his assessment of the MRI. (What's a spur, I asked) He suggested that the spur had been there for probably decades, but that physical therapist #1 must have moved it to a place that aggravated a nerve, and which changed my life in, what, two minutes? Reason for spur unknown, as I'd never had trauma.
The lab did do sit down x-rays with the stand up ones, but it appeared (if I understood correctly) that the sit down ones were not that clear. I make a point of this because I have read that some people have posted here that you should bring something solid to sit on when you get this type of x-ray. I have reason to think this was the case with mine.
I told him of the symptoms at the vagina and he thought perhaps it was a muscle spasm in reaction to the pain, but that manual physical therapy would not be appropriate at that time because of the bone spur and the degree of pain. My physical therapist #2 agreed with this.
Dr Foye gave me a ganglion impar with cortisone. The idea of the lidocaine numbing all of the nerves emanating from the coccyx (tip?) to raise the threshold to pain did not work for me as much as expected. A week later I felt much worse, but he indicated that this sometimes happens. I felt so bad that I was afraid to walk up and down the stairs. In addition to the 'exquisite' nerve and throbbing pain at the tailbone, and the other equally but different exquisite burning pain now starting upon awakening at the anus and into the rectum, then, as the day progressed, further forward along the perineum, the labia and into the vagina, and into the all the way to the urethra, felt like my pelvis was coming apart. Any friction was excruciating. Any contact with anything down there was pure hell. Dr. Foye told me to wait up to a month before we know what is what. I have to say I did not know whether and how to survive, it was crippling; would I faint, become unconscious, lose my mind, or should I consider other options?
I digress for another moment. Dr. Foye describes his particular sequence of pain treatment and why. Ganglion impar to raise the pain threshold; that plus cortisone for inflammation which might give a person relief for months; nerve ablation to kill the nerves; then possible referral for surgery. However, he is very cognizant of other treatments as a physiatrist, including recommendations for manual physical therapy. And he is keeping updates as I travel my particular path following his advice, which I will continue to describe further on. By the by, he mentions that there has just been an International Coccyx Pain Symposium in Holland, which I assume is already covered on this website.
June 7th I returned to see Dr. Foye and because of 1-the lack of much response to the lidocaine on May 8th (nerve numbing all the nerves), and 2-all the burning at the perineum, and 3-the fact that I could not walk, swim, otherwise play without pain, (he says people with coccyx pain are able to walk, etc. Is this true?) were all indications that there might be other factors involved. He gave me another ganglion impar with cortisone, just to rule out this treatment option, and suggested I seek further advice, especially gynecological.
Urogynocologist with specialty in pelvic floor
I was able to get an appt. on June 15th, with an urogynlocologist with a pelvic floor specialty, and he thinks that this is a nerve related problem, probably developed from now long term pain in the coccyx, and that probably everything is exacerbating everything else being that all the nerves are related.
Even though it is common for some vaginal atrophy at my age, he thinks this should be addressed to alleviate nerve pain, so I take estradiol 10 mcg. inserted into vagina 3x per week for 3 months. Also, for two weeks I took flexeril 10 mg. 2x per day for what he diagnosed as vulvydnia (oh, no, another difficult to treat syndrome) and also the fact that the vagina might be in muscle spasm (but felt a general muscle relaxant would be the better choice than vaginal suppository) and that all of these options are the least intrusive actions to take.
Still homebound, still in pretzel positions to keep all the area spread apart as much as possible, when home wearing loose skirt with no underwear,
Two weeks later I made another appt. with this doctor as I had more questions. Jon had suggested I investigate pudendal neuralgia. I believe the doctor did not think this was relevant in my case. I also suggested that the flexeril seemed to give only minimal if no help and felt that I need a nerve calmer for the neuralgia. I had never been so willing to take so many drugs, but desperation leads to submission to almost anything I guess. I was deeply appreciative of his respect for all that I am going through and his desire to help. I asked for gabapentin.
Sometime, last week sometime, end of June, the nerve pain subsided! I believe it is due to the estradiol. After two weeks it is supposed to begin doing its thing, and this coincided exactly. However, the next day I slowly walked up the drive to the mailbox and back, about 7 minutes, and the perineum did not like this. So, I am taking this very slowly. As I move around more, sitting in more comfortable positions which avoid the coccyx but do put pressure on the perineum, I am beginning to have some nerve pain. I am more aware of the pain at the coccyx, which has still to be addressed.
It had been a day since that nerve pain had diminished, but I decided to see my primary care doctor who was not terribly glad to see me, I will say. He knew what happened initially and felt quite helpless as time went on and symptoms worsened. When I described this secondary excruciating nerve pain in the perenial area, he also said gabapentin seemed the ticket, and thankfully now wants to keep on top of things. It makes a big difference to my mood to have an ally. So I have been on the starting dose of this drug since the 30th of June and am to see him two weeks later.
I apologize for this long post, but also hope it might give some ideas for people with similar problems. Hopefully the nerve pain will subside and the resulting coccyx pain can be addressed properly. I have yet to find out whether the bone spur is indeed hindering my ability to walk, swim, etc.
Oh, I have tried some alternate ways of sitting. Adulterating the concept of split seat, I have two stools that reach approximately to my hip bone that I sit at edge of each on sitz bone, with space as comfortable apart. And there is a glass table that is the correct height to set my computer to work. Or sit on sitz bone on side edge of one seat and bent foot on the other. But best to keep changing positions every 10 or 20 minutes to try to avoid body pain.
Most important, to my mind, is the need to keep one's body in alignment. We have to sit so oddly. Someone suggested Pete Egoscue's book Pain Free, and there are practitioners trained in this that one can try to find. Also, I think the book Walk Tall by Sara Meeks might be good. It is geared towards people with aging bones, but also alignment and posture in general, even advice on how to stand. She has a website and appears to be a significant forerunner in the field of p/t. The book is cheaper online at other websites. On her website is one download that is good called The Re-Alignment Routine.
Standing of course will be a biggy from now on, and I want to get my body in shape for that. Having been homebound for almost seven months now, I am spending a lot of time trying to keep fit with p/t exercise and other things I have learned.
Also, deep relaxation is big, in my opinion. I have found a CD 'You Are Not Your Pain', borrowed it from the library, by Vidyamala Burch and Danny Penman. I like her voice very much.
Please note I have no connection with any of what I mention above.
Lastly, trying to keep no stone unturned, I have one idea which will probably not come to pass. I keep wondering whether the adjustment that caused the problem could possibly be reverse engineered. Since no one can figure out what physical therapist #1 could have done, I am writing to her (I assume she will not respond) to ask if she will describe the nature of the adjustment, and also will ask Dr. Foye if he thinks this reversal could possibly be done. I also plan to at least have a consult with a manual physical therapist to get whatever information I can about what they do with bone spurs at the coccyx.
I will post again. Sincere and humble thanks to you, Jon Miles. I truly respect the way this website is designed.
Estradiol and gabapentin
Forgot to add in previous post that even though there had been burning in the vagina, I decided to try massaging internally to relax the muscles, using coconut oil. I was concerned at first, due to the constant burning; however, it having been suggested that this burn and rigidity it is due to a muscle spasm, decided to give this a try and it did not increase the pain, relieved the tightness, and felt better. I continue to do this and sometimes find it totally relaxed and open inside.
I began the gabapentin on June 30th and am now on 900 mg. since Saturday, July 14th. I am getting closer to pain free in the perineum, but when I walk, even a short distance, it causes uncomfortable burning in the vagina, to my great disappointment. Also, since I was feeling better down there, I started sitting more casually, of course avoiding the coccyx, and it exacerbates the burning, so I'll continue increasing the dosage, (damn it). All in all, though, the crippling pain is still gone and I would say I am now 'uncomfortable' to 'occasionally very uncomfortable'.
Manual manipulation cure?
Why do so many in the 'bone spur' section end up with removal (yikes)? Scant few report long term or permanent improvement from manual manipulation. I plan to investigate this further and would deeply appreciate hearing from others' experiences that have bone spur at the tip, and have manual manipulation from highly qualified and experienced practitioners,. Even though I am in the USA, I decided to write an email to Dr. Durtnall's practice, asking whether he treats patients who have a diagnosed bone spur (I forgot to specify at the tip). Here is the response.
"The top experts in the world of coccyx knowledge now agree that most people with bone spurs or spicules have had them very long term or since birth and they're not typically the cause but the resultant pressure /pain point. Michael successfully treats a lot of patients with a bone spur or spicule which is the focal point of the inflammation and pain because the coccyx is too straight and inflexible like a spike so that when you sit leaning back the pressure is all on the tip."
Having lost about 22 pounds several years ago, I found this other quote from a post of Dr. Durtnall's in 2015 of interest:
Update, 2015-01-04: 4. Another small group are thinner people or those who have lost 'buttock muscle mass' over a few years or after a diet or illness in middle age who have then developed a bony spur, spicule or inflammatory area at the tip of the Coccyx. This usually happens when the top coccygeal joint is bent backwards or straightened and the Coccyx has become stiff so it is like 'sitting on a spike'.
Muscle release exercise
There is one I have not seen on the site, from a manual physical therapist, one sits on a soft rubber ball placed between the coccyx and sitz bone, then relaxes into the release. I did this, found it relaxing, and gives one a sense of space there. However I would suggest doing this gradually, as I did not and the muscle became quite sore the next day. Here is the (rather long) link: www.youtube.com
I have made an appointment with a certified specialist for this coming Tuesday. I am hoping she will help with alignment. Questions: will this help with tailbone-probably not; will this help with doing alignment correction after sitting in all the awkward positions; will this help with increased comfort when standing for long periods of time.
That's it for now, I think . . .
Egoscue-- With my continuing belief that pelvic alignment is so important in regard to coccyx pain, both because, as some have written, realignment has actually reduced or eliminated the pain; and, also, because sitting positions become askew when trying to avoid pain: I am working with Lauren Warren (see Doctors and specialists in the USA, New York), a highly skilled, multi-educated, Egoscue practitioner (at 51 years old, a world class triathlon champion). I cannot recommend her enough. She works by Skype and two other electronic visual methods I don't remember. At first we worked very slowly, as there is the tenderness at the tailbone, even when on my back (lower sacrum as well). Now, after the fifth visit, the exercise is getting more challenging, which pleases me no end. She is constantly checking the alignment during the visit, and asking me to walk. At the first visit she makes a graph of how you stand from the front and from the side. Each set of exercises is geared specifically to each person's body and situation. She says she has been successful at eliminating tailbone issues.
I cannot say that my pain has been eliminated. I do notice some changes in degree of pain and ability to move around, however I am also on gabapentin, doing p/t, so there is no way of knowing.
Be that as it may, I continue to be blown away during each visit by her skill and knowledge, and sensitivity and kindness. This is a mobile phone and she says she will probably respond more quickly if one texts. She is remarkably affordable.
Recently, a number of meetings occurred very close in time to each other, requests for appts for which I had waited a long time that suddenly came to pass virtually days apart!
I saw a gynecologist I had waited months to see. She pressed on the pudendal nerve (please see my description of this aspect of my problem in another part of my earlier post) in two places in the vagina. I reported that although it hurt, it did not duplicate the perineal pain. But, the pelvic manual therapist I had been trying for months to at least consult with, since she has experience with the coccyx, has a close relationship with this doctor, so within a few days I was called to come in. The follow-up appt with my gynecologist was left open, with the decision to see this pelvic floor therapist and then go from there.
Pelvic manual physical therapist: We had our third session so far this past week. The first was the most surprising. It all but eliminated the symptoms in the vaginal and surrounding perennial area! She worked inside the vagina and also outside from tender areas in the butt.
During the week between sessions, if I put a lot of pressure on that area, I did then get pain, and had one very bad day. The second session went well, I felt almost completely fine, but feel I am backsliding again. We will see what happens this third week. I am hoping she will eventually give me instructions on what to do on my own in the future.
Third session went very well. Vaginal wall is more relaxed than I can remember for perhaps decades. She says she is also working on the muscles that attach to the coccyx. I notice that sitting is much easier. I am hoping she will make some progress 'reverse engineering' the adjustment the p/t did in January of this year. Dare I allow myself to hope?
She is a terrifically qualified practitioner and I know she is using all of my feedback to assess what is going on. In terms of my question of whether this is pudendal neuralgia, her advice to me is to STOP RESEARCHING for now! We will see if this needs to be pursued after the work has progressed.
(This is a bit of a repeat as I originally wrote this mid November, but must have sent it incorrectly.) Regarding the bone spur coccyx pain, she does not want to go near that area for now because of all the nerve pain. But she says perhaps later she will attempt to deal with that.
Another cushion: The pelvic manual p/t suggested this from client feedback. She has been told that patients with both pain at the coccyx and perineum recommend it. I like it a lot. Brand name is Gelco. It is firm, the most comfortable I have been on, doesn't actually feel like I am sitting on anything unusual. It rises in the back part. One can look at their site-- I recommend only getting the Ultra cushion as it is thicker, or on Amazon. It might be alienating, as it does not have an actual opening for the coccyx, totally unlike the typical coccyx cushions. But since I definitely have a bone spur, there must be something right about it.
Unfortunately, from the company's site, one cannot return the cushion if opened. And since it is packaged folded-- it folds with a handle in the middle-- you cannot test it in its packaging. However, on Amazon, from reading reviews, it appeared that customers had returned it thru them. I recommend reading customer reviews. Dr. Foye has other recommendations, but I seem to have misplaced the names. When I find them I will add them here.
And one third appt also occurred. Since there was a well attended workshop on pudendal neuralgia at the international coccyx conference in the early Fall in the Netherlands, I emailed Dr. Foye (he is my main coccyx dr) for the names of specialists he met during the conference. Dr. Foye made an appt for us to consult and he checked some points from my rear, outside, and suggests that he could do a pudendal nerve block injection, with cortisone, as one way of testing whether I have this condition. Once explaining that I had already started the manual pelvic work, we decided to put this off.
I asked him why the spur at the tip couldn't be shaved off and was told it has to do with the closeness and number of nerves right there. If I understood correctly. So, if I want the spur removed, I have to get more of the bone removed. And he feels his job is to try to help people avoid that if possible.
For the perineum problems— Note: I have since learned that this is the incorrect term—it is actually the pelvic floor which covers the entire area from urethra to rectum
I am now on 1800 mg. gabapentin, which has relieved the crippling intensity of the pain from the anus to the urethra about 50%. This is the highest dose that my internist is comfortable with. The discomfort or pain varies over the days. Cold packs help. Stretching inside the vagina with coconut oil seems to help some. I am not kept up during the night from any pain and feel fine when I wake up. I do admit that I am sometimes in terror that the original pain will return, as it severely tested my sanity and general ability to go on. To my dismay, I still cannot take walks or swim. So am grateful for the strength building exercises I have from Lauren and my other p/t.
Regarding physical therapy: Since my initial problem was a pain in my low back (again details in initial post)
The physical therapy, elsewhere of course, is going very well. The reason I mention this here is because of the importance of getting the body strong and aligned. With tremendous support for the exquisite tailbone pain, and the exquisite pelvic floor pain, that in itself means a lot. I am now working with a person from the practice who has special training in pelvic alignment . We all need to make sure the pelvis is in alignment, but I've already blown that horn…….,