Lelej, Egypt - email@example.com
I am 28 year old female who lives in Egypt. I will share my story in hope to save someone from the horrible pain I had to go through after coccyx manipulation. Doctors can misdiagnose easily and cause horrible consequences because for them we are just one of the cases they see daily. And coccyx manipulation IS NOT A minimally risky procedure.
It all started after a rough workout amid April at the gym, it was with a trainer, was a back weight exercise and the day before was a lower body exercise. After the back exercise I felt sharp pain in my sacrum area. Went to see an ortho, got NSAID drugs and muscle relaxant, I was back to normal in 3 weeks. Then as the Dr recommended I should start pt, I did, she did strength exercise. Pain returned, I had spine X-ray and MRI which were clear (didn't include coccyx). Went back to the ortho he asked what my pain felt like, I said burning. He said burning = degenerative disk and gave me meds for disk because he didn't have time to check my scans!! Which shows normal disk spaces. I ignored him and took NSAID and muscle relaxants, was better until I held my nephew who was 1 years old. Pain returned went for Chinese hot towel therapy, pain exacerbated (never do this if you have burning pain you need ice, learned the hard way).
Went back for pt she insisted I have si joint problem. Forgot to say that any time I had sacrum pain it was accompanied by mid hip pain. Did another spine MRI (was clear). She insisted on doing strength exercise to strengthen the muscle. She said I lose muscle extremely fast. I told her I almost feel no pain upon waking up, then pain comes back upon moving. She said it is muscle related. Told her I can only sleep when I sleep on my back with one leg in the crossed position (told me because u release muscle).
She admitted she really doesn't know my problem, she had never seen a case like me. Even though she continued the strength exercises! And told me I have to do strength exercises twice daily with stretches, I told her they are too painful. She said you have to work through the pain to get better. Be strong. WRONG! my advice to anyone reading this: your pain is a mechanism of telling u that something is wrong. You should stop exercise or anything even if the Drs told u to do so. By now pain became constant, sitting was unbearable, it felt like something is pulling my lower back when sitting.
Went to many doctors. One of them is professor hazem el sebaay (???? ???????) He gave me the strongest NSAID and muscle relaxant but nothing anymore worked. Ordered hip MRI and all kind of blood test including rheumatic (all were clear except vitamin d deficiency). He insisted I am not in pain (faking it) and he prescribed me arcoxia to take only when necessary. I was in too much pain but nothing proved it, even my parents started disbelieving me and were reluctant to send me to another doctor. I became bed rest.
Went to another doctor, he said I have psychological problem because I briefly said I have anxiety issues (even thought it was ptsd which should have nothing to do with this pain) and gave a lecture about how mental illness is nothing to be ashamed of. Lol
Went to psychiatrist gave me cymbalta and serquel 25 to aid sleeping because I couldn't sleep from the pain told me to increase cymbalta gradually to 60 and pain will vanish within a month. But it didn't.
Visited another Prof. dalia al marghani ) ????? ??????? Who was the first Dr out of 6 before her to do an actual physical exam. She palpated my coccyx and I screamed, she concluded I have Coccygodynia and gave arcoxia and perpegdin because she though having pain for 2 months made it chronic perpegdin and cymbalta where good but for other-reasons will get to this later). And she gave me 2 blind shots. Never Ever DO BLIND Shots of cortisol with anesthetic. Before the shots I had no between hips pain (at the time thought it was coccyx). Unfortunately because I am an engineer and not a doctor I had no idea where the coccyx end exactly. The pain felt deep like something aching inside. Did MRI of the coccyx 3 days after the shots, showed inflammation and confirmed the diagnoses (now when I think about it maybe that inflammation was the steroid acting up).
She told me to sleep on my stomach, I did but pain was horrible. I could hardly walk because of the aching pain inside. It felt like something painful inserted inside like a ball of razors. I went back to her she insisted I am better and almost pain free and that I am exaggerating things.
I waited for a month but the pain seemed to be worsening. I bought the donut cushion but couldn't sit at all. I had sacral, hip, and coccyx pain. I have to mention that the anesthetic made palpation painless. But the new inside pain was horrible. Could barely stand, walk and sitting was out of question. Went to another pelvic ortho surgeon he was hysterical about my condition he kept laughing like it was a joke. He said I am a surgeon so of course I will tell u to remove the coccyx. I told him but I could get wore, he said u can die from anesthetic and kept laughing. I was in too much pain and I really wanted to just hit him with anything. He gave me NSAID creams which seemed to reduce hip and sacral pain and told me to do laser, ultra sound and tens.
They reduced a pain a bit until the pt insisted I have to do strength exercise to support the coccyx (I am sure she has no idea about whatever she was saying) it was done as aqua therapy. Pain became intolerable so I stopped pt. Went back to Prof. hazem al sebaay because unfortunately he is the only one who can perform manipulation under anesthetic and thought it was better than the surgery so I should at least try. Under fluoroscopic guidance he gave the steroid shot and manipulation. Pain was horrible after the procedure and I got couple of blood 2 days after the procedure. Skin became too sensitive to even my clothes, can no longer wear pants only skirts and dresses. The steroid injection left a small pimple but it was so far above the source of my pain!
Went back to Dr hazem al sebaay, told him the pain in my sacrum is gone (I can longer feel the pulling back pain when sitting) but the coccyx pain is the same. He said we will have to remove the coccyx then. Also the pain has spread down I started having gentile and prenium pain (which I didn't have pre-operation) I told him but the pain is far away from the injection site, he performed his very first physical examination and told me this is rectal pain. I asked about the possibility of the pain being caused by the pudendal nerve (because I have read about it and my symptoms resembles it so much) he said I have never heard about a thing called pudendal nerve! I wonder what they tech them in Med school!! And my mom told him that his procedure caused bleeding he said maybe yes and it was like so what can u do about it! (because in Egypt we have to sign paper before any procedure, stating that all the consequences will be on us freeing any Dr from any legal claim other wise no Dr will accept operating on any of us).
He sent me to dean Prof. of rectal surgery ahmed farag who upon rectal examination said most probably you have an anal fissure. Told me to soak in warm water after ever BM and gave me fissure topical cream and pills. Told him about the possibility of being caused by pudendal nerve said no nerve pain is different (how on earth can he feel my pain and conclude it is different!) And told me to do an endoscopy after one month. Did all of this but ..boom.. nothing, on the contrary I injured my feet joint on the bathtub jet because I had to sit on my legs. And because I am a very unlucky person the injury hit a nerve. Anyway the pain was nothing compared to the constant anal pain that now spread down in addition to horrible lower hip pain.
Went to see another rectal professor wasim al sisii (???? ?????? did a rectal physical exam and said no you don't have a fissure you probably have an abscess and sent me to do a very painful intra rectal ultra sound which again was clear. I asked him about the possibility of it being a nerve he said "too little knowledge is a dangerous thing"
Went to see a Prof. neuro told him could it be pudendal nerve.. said if you can control your BM then it is not PN. And wanted to just remove my coccyx even though palpation produced very little pain almost nothing. I had horrible pain only at 6 o'clock towards the coccyx from inside. Wanted to go to France, riots broke out. Lol.
Searched about Drs who know anything about PN in Egypt found two. One diagnosed me with pelvic floor dysfunction with tight pelvic floor muscle caused by small tear. Causing Levator Ani syndrome pulling the coccyx, causing coccyx pain and irritating the pudendal nerve. The other Dr is Prof. Ibrahim Ahmad shamim son of Prof. Ahmad Shafik. He instantly diagnosed me with PN and send me to do pnlt which resulted in 2.6/ 2.5-2.6. I will get my first PN nerve block in a few days pray for me.
I did post in a very detailed manner so anyone having similar symptoms should avoid the mistakes that progressed my symptoms. Also to go with your gut (you understand your body the most). Don't blindly trust doctors even if they are professors. Ignore the diagnoses of anyone who doesn't do an actual physical exam. And don't just go ahead with the surgery unless you are 100% sure you don't suffer from any of the diseases listed below which are very hard to diagnose
Coccyx pain can be caused of other dysfunctions like
1. Si joint dysfunction
2. Pudendal neuralgia
3. Pelvic floor dysfunction
4. Levator ani
Things that point toward pudendal neuralgia or pelvic floor dysfunction
1. Strength exercises causes pain
2. Feeling of ball inside or a pressure
3. Over sensitivity to touch and clothes
4. Pain relief when sitting on a toilet seat
5. You lose muscle fast
6. You feel better upon waking up (a big sign of muscle problem/nerve)
7. You have muscle spasm almost all the time
I have no idea whether the blind shots caused the PN symptoms or the manipulation or simply the manipulation progressed my symptoms.
I also have no idea whether I have PN or PNE or PFD they all have very similar symptoms ALL CAN CAUSE coccyx pain. I hope no one experience pudendal nerve pain, but everyone with coccyx pain should consider the possibility before doing other procedures that will further irritate the nerve)
If you suspect you might have PN visit pudendalhope.org I learned a lot from there.
Please don't hesitate to ask me about anything.