Coccydinia from childbirth - is there hope?

Vicki - pearsonzoo@yahoo.com

Original posting, 2004-03-28:

Hi, like several others who have posted here my excruciating pain was brought on by childbirth. A long, painful 3-hour pushing session on my back, finally assisted by vacuum -- I knew things were "breaking" inside but they told me to keep pushing hard! It has been four weeks, and for the first three doctors kept telling me it was the hemorrhoids and episiotomy. I kept pushing for help and finally went to colorectal surgeon. He isolated the pain to the coccyx, but x-rays showed nothing, so he said he can't do anything. Said it is damage to the nerves and muscles covering the coccyx, and all I can do is stay off my rear and take anti-inflammatories.

I can't do either of those! I have a newborn who needs to be nursed and rocked, and I need to sit about 15-18 hours per day. I've tried nursing on my side, doesn't work. And can't take anti-inflammatories because they do pass through breastmilk.

Perusing the stories on this site lead me to believe there is no hope and I'll need to live with this pain forever. I cannot stand it, it is excruciating.

The only solution I see is to stop breastfeeding my baby and take some of the powerful painkillers my doctors have offered, but I can't do that forever! Soon I'll have to go back to work at my desk job, where I sit all day and can't be drugged up. And I don't want to deprive my child of the benefits of breastfeeding.

This has totally ruined the experience of my first child. I cannot enjoy him without the excruciating pain overwhelming my thoughts. And all thoughts of a future child are out the window, I can't go through this again. This has been absolutely devastating --- my husband does not understand, really no one does except others who have experienced it.

Is there any hope? Has anyone's pain resolved itself in a reasonable amount of time? Does anyone know of a pain reliever that works that would be least dangerous to my baby (I tried high doses of Motrin, that did not do anything)?

Vicki

Update, 2004-12-19

I posted back in March so won't repeat the story here, but it's been a long road with no relief. Well, at least I can sit now with my special cushion but it still hurts like heck. I am still trying to figure out exactly what the problem is so I can attempt some resolution! It doesn't appear to be misalignment or break/fracture, but I'm not sure.

After seeing multitudes of doctors and having x-rays and MRIs, my doctor is now calling it "perceived pain." !!!! One colorectal specialist I saw felt around extensively and he was the one who pinpointed that it was damage to the tip of the coccyx, but said he couldn't do anything other than recommend waiting to see what happens and then possibly surgery. He thought there was damage to the tissues at the end of the tailbone which contain nerves and muscle.

However this stuff apparently does not appear on x-rays or MRIs, and doesn't fly with the other doctors I've seen. After reading some other posts, I'm wondering if my coccyx really is misaligned and has been missed on the tests -- although would misalignment result in great pain from just touching the tip of the tailbone?

Has anyone else had this type of severe and lengthy pain *without* misalignment or break/fracture? What were the symptoms and diagnosis, and was there resolution?

I feel like my coccyx has been thwacked with a hammer and then stabbed with a hot knife. If I accidentally shift the wrong way, it is like being brutally stabbed. In the first few months, the most painful thing was rising from a seated position, it felt like a meathook was pulling my tailbone out of me.

My doctor is offering to put me on painkillers once I stop breastfeeding my son, but I would like to resolve the problem rather than batter my body with painkillers indefinitely...

Update, 2007-09-09

I have received so many emails asking for updates and advice, so will offer my update here.

It has been 3 1/2 years now. FINALLY, in the last year, the pain has minimized. It does not hurt me every day as long as I am careful to sit on firm surfaces and balance on my tush cheek muscles, and always use my coccyx cushions in the car and elsewhere. I even just bought a bike seat with a coccyx cutout so I can try to ride with my son.

And no, I have not had another baby, but that's partially due to other reasons. I would research different positions for delivery and find a doctor who understood how to protect the coccyx if I did it again. Otherwise, no way...I'm petrified going through that again would damage the coccyx forever!

I think one of the hardest things for me was that I saw SO many doctors who totally dismissed this! No one ever took it seriously, and acted as though it wasn't possible to have such an injury not show in an x-ray. Even more infuriating, when I recently obtained copies of my x-rays and records, I saw the x-ray tech's notes that they did NOT get the end of my tailbone, and recommended redoing the x-rays!!!! My doctors kept saying I was just depressed (postpartum) and it would go away when I was not depressed anymore. I was experiencing the worst pain I'd ever felt, and they were saying it wasn't there??? I was an educated, professional career woman with an MBA and was being made to feel like a 3-year old crying over a skinned knee. Doctor after doctor after doctor.

I wasted a lot of time looking for answers, and the insulting medical responses made the situation worse. After about 6 months I could sit, but boy it sure hurt every day. If I shifted the wrong way in my chair, it was like being stabbed with a flaming jagged blade in the rear. I did not want to try pain management meds or shots, because I wanted the injury healed, not just have the pain masked -- which might have made me sit on it more and aggravate it further! If someone offers you something to mask the pain, kick them in the shin...because the only way that coccyx will heal is if you stay off of it!!

In the end, I have learned that I have arthritis which is probably a big factor in why the injury still hasn't healed. However, I believe that my pain would have eased much earlier had I known a few things that I know now.

My recommendations for others:

1. You could get an x-ray to see if it is broken, but then there's still not much you can do but wait and follow this other advice.
2. Buy tush cushions and put them everywhere! In the car, on your chairs..
3. Don't wear jeans or pants with seams. Ouch! Wear sweat pants, skirts, whatever. Any pressure on that sensitive area aggravates it.
4. Don't sit on cushy chairs or couches, only firm surfaces (or cush with coccyx cutout) (the fluff or cush pushes up into your coccyx)
5. After the injury, stay off your tush as much as you can (duh, right? ;) You have the best chance of healing if you don't keep reaggravating it! Take an unpaid leave of absence from work if you must!
6. Be very careful about sitting in contorted positions. I had very serious and painful back pains due to sitting in contorted positions trying to breastfeed. I had to get chiropractic help for that; my spine became misaligned! Just get the tush cushions, otherwise your back and tush will be competing for top honors in excruciating pain.
7. If you're not breastfeeding take anti-inflammatories to help it heal. (I remember asking over and over -- will anti-inflamms just mask the pain or make it heal -- and not getting concrete answers. Now I know -- yes, anti-inflammatories help your inflamed joint and muscle heal!) But even if the anti-inflamms ease the pain, STAY OFF OF YOUR BUTT!!!
8. Use a body pillow to keep you on your side when you sleep. I used to wake up in the middle of the night having rolled onto my back, and almost hitting the ceiling from the pain in my rear).
9. Try fish oil/Omega fatty acid pills. I now take them for my arthritis, as it eases inflammation. It only seems logical that they could help an inflamed coccyx area.
10. As I said earlier, I wouldn't try pain treatments, because I believe if you don't feel the pain you're more likely to sit on it and prevent it from healing.
11. Try seeing a rheumatologist. I saw every specialist possible but not a rheumatologist. I saw one recently due to arthritis, and he understood the coccyx pain more than anyone I had seen previously! Rheums. specialize in joints and muscles and inflammation -- another duh!

In general, the less you aggravate that poor damaged coccyx, the better chance it has to heal! I never thought the pain would be bearable but it is now. I can't do a lot of things other people can do (roller coaster? no way! fluffy couch? AAAAgh! ;) but am not in constant pain.

Best of luck to anyone reading this! And thank you SO MUCH to Jon for managing this site, and putting us all in touch with each other. This site made me feel sane again, when doctor after doctor had started to make me feel crazy!

Vicki