I have given up on everything I enjoy
Katharina, Germany - katharina-vogtmeier@web.de
Posted 2023-09-26
I am a woman of 32 living in Germany. My coccyx pain started at the end of last year and I can only guess at reasons. I had been rowing for two seasons by then without problems, so even though I initially blamed my increasing pain on rowing, now I doubt this has been the (only) reason. Maybe it was the winter training sessions, that involved quite a lot of sit-ups on only very thin padding. I am quite slim and could feel rolling over bone. Anyway, at some point last winter between rowing, driving my bike to the lake and doing sit-ups in the winter training sessions I noticed the pain starting and increasing. At first sit-ups became painful, then quickly impossible. Next I felt pain while riding my bike in an erect position (I still have no pain when I lean forward on my mountainbike). Then I felt pain leaning against things like tables and soon after a slight pain when sitting long or in a reclined position. It was at this point I decided to pause rowing. As I had my absolute dream holiday to New Zealand coming up, I did not make a doctors appointment right away but decided to see, whether a month without exercise would make things better. You guessed it: it did not!
The flights to New Zealand were agony but I could still drive through the country in a car all day, it was uncomfortable but manageable.
As soon as I returned to Germany I booked an appointment with my orthopedist, but had to wait another 6 weeks for it. During this time the pain only got worse. But I have to say, I still felt good, because I had this naive thought, that the doctor would diagnose me, prescribe some treatment and the pain would go away.
At the appointment the doctor did not even let me finish describing my symptoms. As soon as I had mentioned the word rowing, he was convinced I had an inflamed periosteum because of the coccyx moving over the seat (he did not let me explain that rowers might be masochists, but are not idiots - the seats have cutouts so your coccyx does not actually touch the wood). He sent me for an x-ray, which was done lying down on my side (he x-rays everybody completely regardless of symptoms). He then told me I had a loose piece of bone in the coccyx, but this could not possibly cause any problems. It might have been a mistake to believe this, I don’t know yet. He prescribed a donut cushion, told me it would take half a year and if the pain got to bad, he could give me a cortisone-injection, but this would just mask the problem. So I tried the cushion but was back within 4 weeks to get that injection. For a long time I believed, it had not worked, but now I am not so sure anymore, because two weeks after the injection the pain was not gone but so much better, that I could ride in the car without much pain for 3 hours. This was a blessing as I was moving from Hannover to Berlin.
I had been in Berlin at my new job for just a few days when the pain started getting worse again (approx. 6 weeks after injection). I felt the pain not directly in the middle, but exactly next to it and using my glutes made my coccyx hurt al lot, so I suspected the muscles to be the problem. I called my doctor in Hannover and asked him to prescribe some physiotherapy. He did not agree to do this without me coming in again. So I found a new orthopedist in Berlin who did not check my symptoms at all but prescribed physiotherapy. I thought, now the problem would surely go away.
I had to wait for 4 weeks for appointments. I was so disappointed when my physiotherapist only treated the piriformis muscle, without testing, whether this was actually the problem. When I told her, my symptoms did not fit, what I´d read online and pressed her to make sure, this was really the right approach I became the dreaded difficult patient. She did not check and simply continued pressing on the piriformis - it did not help at all.
Six months had now passed and the pain was only getting worse. I now started to feel desperate. I went back to my orthopedist who ordered an MRI (I have attached some photos). According to the radiologist, there was a slight inflammation at the bone and the surrounding tissue to the left. The coccyx was angled at "70 degrees" and "stuck out". She considered this a normal variation of the coccyx and found nothing else to be wrong.
When I asked my orthopedist, why the inflammation was still there, even though I had quit all exercise, only sat with a wedged cushion and now avoided seating as best as possible all together he openly admitted to not having the slightest idea. He told me to take painkillers, not caring that I had already unsuccessfully tried paracetamol, ibuprofen, etarocaxib and metamaxol and prescribed another round of physiotherapy. His words were: "Lets try this and see what happens."
It was at this point, I was starting to feel really desperate. The next physiotherapist (for obvious reasons I did not return to my first one) had no clue either. At the next appointment her boss was the first one to actually test, what made the pain worse and what made it better. When he said, he did not understand it either, I could have cried right then and there. But then he found, that certain points in my pelvic floor were very painful. He thinks I have "massacred" my pelvic floor by rowing. After his treatment I could hardly sit at all the next day, but afterwards felt a little more relaxed. It did nothing for the main pain though. Now I have been waiting for three weeks to continue this treatment, but he is sick and I am running out of patience.
My pain has gotten so bad that my GP told me to not work for three weeks which is adding to my stress, as I just started this new job. It was then that I told myself I would become a pain in the butt of the doctors for a change. I have now spent the last week getting several opinions and have made specialist appointments for the next week, thanks to clients of mine in the health sector (it really takes vitamin b to get appointments in time).
So far I have been told by different doctors:
1. My coccyx supposedly moves when pressed. This doctor got me a referral to a hospital and said it would probably have to be removed. The appointment is at the 29th of September (I will let you know what the surgeon advises).
2. My coccyx was at a wrong angle and standing out. This doctor also advised to either live with the pain, gain 40 pounds or have surgery.
3. A proctologist found nothing wrong with me. Because pressing on the coccyx-tip from the inside did not produce my typical pain, he advised against surgery.
4. Another doctor looked at me in disbelieve when I mentioned a joint between coccyx and sacrum and told me it was normal for this kind of pain to last for years. When I pressed her as to what I should do in her opinion because I could not cope with the pain anymore, all she did was order another MRI (I’m having that on Monday; as the husband of a good friend is taking it I am hoping for a more thorough evaluation)
5. A neurologist found nothing wrong with me, but offered to prescribe an antidepressant commonly used in the treatment of chronic pain.
6. The last doctor I saw told me, surgery on the coccyx was never performed, except for severe fractures. There was nothing much you could do about it except maybe see an osteopath.
With the exception of the first doctor not one of them even looked at my x-rays and MRI images. And not one of them made sure exactly where my pain was. I gave up on getting a qualified opinion from general orthopedists.
Next week I will have the MRI, then an appointment with an orthopedist specialized in rehabilitation who apparently has some experience with conservative treatments and on Wednesday an appointment with Dr. Reinhold, who is supposed to be a specialist for coccyx-surgery.
I am terrified of surgery but to be honest even more terrified of being told, not to be a candidate for surgery without any idea how to make the pain better. At the moment my fear of this never ending is almost as debilitating as the pain itself. I have given up on everything I enjoy (rowing, travelling, going to the movies, having dinner with friends) and now am not even fit to work. I am just praying, next week will bring about clarity as to where this pain comes from and what can be done against it. I am not expecting miracles but I need some sort of a treatment plan that does not just follow the principle of "Let's look what happens".
I will update on the news of next week and look forward to hearing from anyone who has advice.
Best wishes to all of you
Katharina
Update, 2024-11-03
I had an appointment with Dr. Reinhold from the university clinic in Göttingen (see Doctors and specialists in Germany). He was the first and remains the only one to do the appropriate tests. The sit/stand x-rays showed that my coccyx moved close to 40 degrees and stood up when I sat down. He seemed a little sceptical though, because a manipulation of the coccyx from the inside did not hurt (it only hurt when pressing from the inside). An injection of an anaesthetising brought immense relief for a few hours. Because of this he considered me a candidate for surgery. He recommended to first try treatment by a pain specialist.
I followed that advice (in my case a big mistake). The pain specialist told me, a coccyx could not move and my problem was chronic pain and maybe a problem with my internal muscles. She told me to not let anyone do surgery on me, because then I would be in real pain. I am still at a loss for words.
I got a second opinion from a surgeon, who did not run any tests but said in my case only surgery could help. I honestly trusted Dr. Reinhold more but was afraid, he would not agree to surgery soon. Because I couldn't take any more, I scheduled surgery with the second surgeon.
Surgery was on the 23rd of October 2023. I was in a lot of pain when I woke up and the next few weeks were pretty tough. The hospital had put me in a room with a patient that already had a fever and a cough, so one week after the surgery I had Covid on top of a wound infection. Back to hospital. A few weeks later I was in hospital a third time. This was mostly due to my mental state. Both my surgeon and my orthopedist were highly confused, that I was still in so much pain and told me, there was no reason for pain (3 weeks after surgery). This made me really desperate, as I thought the surgery had failed.
It took three months for me to feel as bad as before the surgery, but then things improved quickly. Half a year after the surgery I felt, it was a huge success. Things kept on improving and I think they still do a little bit, although now all that is left is an uncomfortable feeling when I use the glutes a lot or when I sit in a reclined position for too long.
I feel I can do everything again, but I will not risk rowing again. I have been to the opera, the cinema, work at my desk all day and have taken the bike to work. Last month I flew from Germany to Las Vegas and spent three weeks on a road trip visiting the national parks and hiking a little bit. I have my life back.
Now I am honestly just still struggling a little bit with my memories of this time, because I got really desperate for a time and am still quite shocked at how a lot of the doctors acted. My belief that if you need help, someone will take care of you, is somewhat shattered. It took a lot of initiative to find the few doctors who knew what they were talking about.
I hope, this might help someone. If I learned anything from this it is to go to an expert and if you need to make a treatment decision, have the doctors explain their reasoning to you. The spinal surgeons were the only ones who could tell me, what they thought was wrong, what objective findings supported their opinion and why surgery could fix it.
It turned out, that my coccyx was completely broken off. My surgeon could move it freely in my body. It was probably damaged in a fall when I was 13 and now completely broken when I was doing a lot of sit-ups for rowing practice.
What made it really bad at the end by the way was a physiotherapist who also thought, my internal muscles were too tense. To solve this problem, he pressed on my coccyx for 20 minutes per session. Given that that was broken it now makes sense that really did not help me at all.
If I can help anyone with information feel free to contact me.
