Royal pain in the butt

[cwocn]

About 12 years ago I fell on my coccyx while riding my horse, I was young and didn't think much about it, except for the excruciating pain for a few months. But I survived. Since my hysterectomy in 2005 I have had a few bouts with IC, urgency, low libido and typical menopausal symptoms. I have always had constipation and straining was always an issue. I put myself on a BM regimen 5 years ago to help the straining. Never had anything like this, it just came out of the blue, only thing I was doing was taking Zumba 4 times a week for about a year. I Exercised my entire adult life and I started to experience sciatic type numbness bilaterally, then coccyx discomfort like I was sitting on a walnut with a rope feeling along the piriformis and gluteals, right at the tip of the gluteal cleft. I stopped exercising completely. Then it began to hurt/burn (like after diarrhea) after I have a BM, especially the anul opening, like its swollen and achey, a pulling pressure which goes right up towards the sacrum and out to the piriformis and R ischial (it rolls). MRI negative, X-rays ok, coccyx at a 90 degree angle, small hemorrhoids, no vaginal or perineal ache just back at the bottom sphincter, sex ok during, just seems this is the back portion/coccyx area. 2 steroid injections plus oral, now PT, getting better, pain dropped from 7/10 to 3/10, but then missed 2 weeks and when I sit (ouch, never can find a spot) or walk too much it flares up. Is this PN? I am so confused, so down about it, I cry easily, the pain/ache is at 3/10 now..is there help? I just want my life back. What about Neurontin/cymbalta? They keep wanting me to take this but I have not yet, I have been dealing with this since November 2012. Please help define this for me, thats what is making me crazy....and will this be forever????

[Hidden]

I have coccyx pain, it was knocked out of line during an accident. I had it manipulated back into place by a chiro. I get all the sensations you talk about. Sometimes when I'm sitting, it feels like I'm sitting on an orange. Sometimes it burns, other times its numb. Frequenty it feels like its bruised and tender. Hot and cold for no reason.

I am stuck with my pain. I use a coccyx cushion - has cutout at back and tilts you slightly forward when sitting so spine is in alignment. I have memory foam insoles which act as shock absorbers.

It may be worth seeing a physio to check the rest of your spine is aligned properly, that your hips are level and facing the front. There may be slight discrepancies as your injury was never treated. There may be some compensation too that has increased over the years. All easily treated by physio.

Personally, I would stop zumba for a while the high impact will not be helping. Try some stretching like pilates for a few months and then re-introduce zumba, gradually, but continue with pilates.

I consider 3/10 to be painfree, never got to 0 in a long time. Meditation and mindfulness can help to remove your focus on the pain and shove it into the background. These take a while to get the hang of and must be taught by experienced people. They are good tools to have in your survival kit whether you have pain or not.

[cwocn in reply to Hidden]

Thank you! I don't feel quite so miserable now...Had a better day Monday going to PT today and hopefully will talk this out. I am not doing any exercising since Dec of 2012, I think that too plays a big role, I feel older, less fit and really am afraid to to do much because I am not sure what flares it up, except for BM's it seems. It really starts at the ischial and moves inward like dominoes, that has me confused, anyway..I appreciate your thoughts. Hope you do better each day, I am going to try some positive behavior modification.I must say I thought I was a 45 yr old 55 yr old but now I feel all of my 55! But such is life, it still is a very good one.

[helenlegs11 Volunteer]

Sorry you have this problem. I would agree that a trip to a physio could help as pelvic alignment may need attention. This is something not seen on MRI.

A PN aware physiotherapist will be able to give you an idea if your pelvic floor muscles are tight, causing the nerve issue.

It does sound as if it could be PN as the symptoms you describe are typical nerve symptoms and of course the area described is very possibly the rectal branch of the pudendal nerve.

I would try the medication. . . . .my tip is to start with one prescription rather than both together, so that any effects can be monitored. That way if one of those medications is having no good effect (or any unmanageable side effects) it can be stopped.

Give both a chance however together as that is supposed to be the best result.

I would get a physiotherapist to check out your piriformis muscle too. There are some easy stretches to do to get this muscle to relax.

I have 4 nerves causing problems at piriformis level including the pudendal and sciatic nerves as this is the place anatomically where those two nerves are together. However most people do develop a tight piriformis because of another pelvic issue, say miss alignment or PN (sometimes just too much sitting and conversely overdoing exercise)

I would see a pelvic PN aware physio 1st I think here is a list

pelvicphysiotherapy.com/man...

Do tell any prospective physiotherapist or chiro who is checking possible alignment issues about your nerve symptoms. . . they need to do their job obviously but you don't want someone to be too hands on and tough.

Hope you can find some help soon.

Take care,

helen

[Lookingforanswers]

This site is wonderful as I would never have connected my pelvic pain with the pain that has developed in my coccyx since last Sept. The descriptions are all very valid to me, but I find the pain, without any intervention, goes in waves. Sometimes really severe, especially around BM and then as now, very mild and just a burning sensation.

I did slip in the bath, but felt no pain after that, but have remembered that a few years ago, I got a pain injection into my coccyx to help my pelvic pain..which it didn't.

I will take on board all the advice, although it seems that this now, could be a continuous pain problem, like my pelvic one, as they can't figure that one out either!

So many people in so much pain..

[cwocn in reply to Lookingforanswers]

Well it's been 2 yrs and my pain has diminished but never gone. I still feel like I'm sitting on small ropes. The pelvis MRI saw atrophied piriformis and a PT said my hip is very lax, swings out right too much when I lay down. I get frustrated because I cannot stretch or work the gluts without a flare up, going to try weights on machines instead of free weights and start walking again. I had plantar fasciitis and it seems that everything is occurring on my right side. I get frustrated because I was so active and now so inactive with exercise! I can sit but not for long and it's irritating having a bowel movement. I guess I just need a pep talk again, as I thought this would be over. I am scared to exercise because I don't want to go back to the pain I had. I appreciated all the help you all gave me. I have a very supportive husband and children, it stinks being a girl sometimes ?Thanks!

[Hidden]

Its hard to understand pain when there seems no cause for it. And the more info we have now, the more confusing it is. Drs do their best, but when they've exhausted all the tests and scans that thecpain is indicated to try, we can still be left with unanswered questions.

Acceptance is not easy, but I get through it by saying this is me now. I live in the now and now only matters. Yes, I was much worse before, and thanks to a lot of trials, effort, and even more pain, I have found a way to live with it. No point wondering about the future. Medical research goes in fits and starts and the fashion at the moment is to crack cancer. A well worthy cause, and many sufferers will benefit. Maybe a spin off will be better pain control, or a new therapy.

Today, I rested this morning, did 3 sets of my stretching exercises. Then I drove 12 miles to the next town. Had to park away from the town centre, so had a longer walk than planned. Visited several shops, and walked a bit more. The drive back was slower as the pain was creeping into my pelvis. I've been resting again, and now my coccyx is swollen and tender. A bit of meditation will take my mind off it.

Other people have a hard time understanding how something so simple and ordinary can bring me to a halt. And as I need to go to another town, I'll have to go on Thursday. I need a day pottering tomorrow.

[Rocky68]

Hello. I am Rocky68 and my pain started six years ago while I was working in office environment sitting for long time also was taking a curves class. Started with feeling like my garments were too tight almost like a wedgy.

At night it felt like a boil near my rectum. I felt like I needed to go to the bathroom and have a bowel movement.

At night I literally had to sit on my knees and not put any pressure on my buttocks.

I have gone to so many doctors. I've had injections includIng ganglion impar. I went to a doctor in Charlotte North Carolina who removed the coccyx as it was dangling and inverted. I was actually excited about having the surgery as I thought it would bring some relief. It did not do anything for my problem.

I went to another orthopedic Doctor Who did another MRI. Dr. says I have Levator Ani syndrome with pudental spontaneous neuritis.

I take tramadol 50 twice a day and clonazepam .5 in order to sleep at night. This disorder almost makes you suicidal. You go to bed in pain and you wake up in pain.

I will say the clonazepam has helped with my anxiety and offered some relief. I now do some physical stretching and I have been to a physical therapist who did internal and external massages.

My orthopedic doctor says they cannot do a nerve block of the predental nurse however I am reading different lady on the Internet.

Anyone know any doctor in North Carolina who works on this problem? I understand there is a doctor Antolak in Minnesota that is a specialist. Has anyone tried him?

I have tried Gabapentin but it is a horrible drug for me to take. Could not function. I have also tried Amitriptylene for two and half weeks but found no relief. One Dr prescribed anal valium. Suppositories but they made me feel worse.

I am looking forward to hearing from anyone that may offer suggestions. Thank you