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Really struggling with rectal/tailbone pain

T

twirlybird

New Member
Hi! I've (male 34) been having rectal pain and tailbone pain on and off for five years now. It started with a fissure in 2013 that healed but the pain went on. I've been to surgeons, have been examinated under general anesthesia, botox shots to sphincter muscles and creams of all sorts with little to no relief.

After being in pain for two years, nearly bed-ridden I really wanted to try to get my life back. I started excersising two to three times a week and after a couple of months I started to improve. I've been completly free of pain for long periods of time but it always comes back. Triggers seems to be sitting for too long.

This year has been excellent with no pain from January to September when I had to sit through a course at work. It started with a low grade pain as it usually does but I quickly became obsessed and anxious about it which made the pain ramp up to unbarable levels.

I've recently been seen by a physiotherapist that noticed that the tip of my tailbone was extremly tender to touch with an increase in pain afterwards. No real pain to speak of inside the anal canal (had a doctor check-up 1.5 months ago). I've never injured the coccyx which makes me (and the physio) believe the pain comes from tension.

Yesterday was a good day until noon when I could feel the pain coming on. I had been free of pain for four days before this. I tried to massage and put some pressure on the tailbone which really aggravated the pain to the point of which I had to take an oxycodone 5mg and 2x500mg acetaminophen to cope with the pain. This morning for some stupid reason I started massaging the tailbone once again with an extreme onset of pain as a result. It feels like there's some extreme tender points on the tip of it.

Last week was good overall, but right now I'm having doubts and don't know where to turn to. I live in Sweden where no one has ever heard of TMS. Pelvic floor therapy is barely recognised or utilised here either, and frankly I don't think I need it.

I really could use some encouraging advice right now. I struggle with extreme anxiety, hypervigilance and obsessive thoughts about this whole situation. I'm usually completly free of pain when I wake up, then pain gradually builds during the day. I realize that if there was an underlying structural issue I wouldn't be free of pain for a couple of days, weeks, months or almost a year and then suddenly in hellish pain.

Everytime before this goes away after a painful couple of weeks or months it starts with me being a bit calmer, relaxed, less anxious, like I've started to accept the situation. If I manage to maintain this state of mind the pain usually dissipates after a couple of days but it's always hard to get to that point.

Right now I feel completly lost. Today has probably been my lowest point ever. I don't think that any repressed memories or such are to blame but I do feel like my extreme fear and anxiety about the pain is causing this issue, it's an evil loop of despair.

Please help!
 
Not repressed memories, repressed feelings. They could be anything, and they're where you aren't looking. Maybe this is why your symptoms are returning. Also, some of the nastiest blasts of pain I've had are when I was trying to stretch out or mess with the tailbone. It's like you're poking the TMS bear! I've had tailbone pain return quite a few times while I've been into this TMS knowledge (about half a year) but sitting without discomfort is starting to get to be normal. Just know that you're making progress and keep getting into your feelings more. I'm learning that fear and anxiety are probably also substitutes for the anger/rage about whatever it is in our lives that's troubling us. Good luck.
 
I would try not to massage or touch the area if it is irritating you. The one thing you know for certain, is it goes away. It comes and goes. It comes on strong when you are in hypervigilance which means you are holding tension there. I would just go back to what you were doing. Working out 2-3 times a week and living your life. If the pain comes, accept it. Don't fear it.

Sending you a big hug. Sounds like mostly just a battle within yourself.

Another thing, write down what is the worst thing that could come from the pain increasing. Write it all down. Then burn your list. Then write a list on gratitude. All that you are grateful for.

I was listening to an interesting podcast and it was saying, would we say a whole city is wrecked if they had a faulty parking lot? It is just like you saying well I am wrecked because I have this tailbone issue. But the rest of your body is functioning beautifully.
 
Thanks keenie82. I've worked alot with acceptance these last days. I've also worked on changing my attitude towards the pain. I've had less anxiety in the last two days as I've practiced some mindfulness along with somatic tracking and it seems to work, pain has come down to zero with no need for painkillers. I'm also identifying and accepting emotions of rage/anger/sadness that I'm always holding within to appear calm on the outside.

I'm actually reading "The Divided Mind" right now, and one quote from the book really got me. "I feel very anxious. It’s funny, but when I feel anxious I have no pain." This is literally me. It also struck me I've had signs of TMS for probably 18 years or so. Strange bodily issues, pain in different locations that have come and left or moved around with doctors never finding anything wrong.

I'm going to continue doing what I'm doing, it feels like I'm about to kick this once again as I've felt great for two days now. This time I'm going to continue my efforts even after the pain leaves. Earlier, I've abandoned all work as soon as I became pain free but this time I'm going to stick with it. You're completly right saying this is a battle within oneself. :nailbiting:
 
twirlybird said:
Hi! I've (male 34) been having rectal pain and tailbone pain on and off for five years now. It started with a fissure in 2013 that healed but the pain went on. I've been to surgeons, have been examinated under general anesthesia, botox shots to sphincter muscles and creams of all sorts with little to no relief.
Click to expand...
I have sent you a private message about this - it should be in your 'in box' (top right hand corner of the screen).
 
That is wonderful twirlybird. I recommend Tara Brach too. She had a good course called 'Flourishing in Stressful Times.' Tara said what happens in times of stress, it is our reactions to the stress that lead to dysfunction. Though it is hard, to get our neurons firing in different directions, it is better to react mindfully to our stress. It stops that dysfunction. I can agree with you that I am 35, and have had signs of TMS all my life. I am a type A personality, perfectionist.

You will totally kick this if you have been feeling great for 2 days!

I can share something about me, I have been dealing with 'overawareness/fixation on my bladder.' Well yesterday I started getting pangs in my pelvic floor, probably from a tight muscle (had spin class the evening before and some vigorous sexy time with my husband). Well as soon as I started fixating on that muscle spasm in my pelvic floor, worry about my bladder vanished.

I can also relate to what you said 'The Divided Mind' - 'I feel very anxious.'
 
Thanks keenie82. I've visited and bookmarked Tara's site, good stuff! I'm also type A, though I wish I weren't right now lol. I've been there with the bladder trouble as well, about 16 years ago. Ridiculously painful spasms... Oh well, it went away on its own and no dr could ever find any reason for it. TMS anyone? :p
 
Thanks for letting me know that it will go away. I know anxiety plays a huge role for me. Today I seem to be on a dr. google day and that always makes me feel worse. Best to abstain about reading too much unless it is quality (like here or Tara).

I agree, I could go for some good ole relaxed individual and huck the type A personality out the door.
 
Oh you reminded me I had tailbone pain for about 9 months a few years ago. Very occasionally it happens and I dismiss it as a tms because I’ve usually got something tms on the go. I remember it made sitting in the car torture. It was most certainly a tms. Very sorry to hear you’re suffering.
 
Thought I'd share an update on my situation. Still struggling but doing a little bit better. Amazingly I managed to break free from the cycle of pain and anxiety late february. Whole march was amazing, didn't feel a thing apart from some minor issues with anxiety. Unfortunately I relapsed early april after being pain free for a month. Same thing as always, felt a twinge in my bottom, panicked and now I'm back in fight or flight mode with tension and pain. It's so exhausting. Good thing I was pain free for a month though because that means that it can be beaten again and that there is nothing structurally wrong with my bottom.

I still feel I lack the tools to break the pattern in a timely manner. It's so hard to pin-point what I should be doing to get on with my recovery. Late february I met with some friends I hadn't seen in a long time and went to a magic show. We had a relly great evening and the pain left in a day or two after that so that's probably one thing to focus more on. I just felt so relaxed about my whole situation and holding on to that feeling seems to have helped alot.

I'd really appreciate some input. If I could only beat the anxious thoughts about my bottom I'd get much better. I've read books and journaled but it doesn't seem to do it for me. My main issue is I'm so anxious and focused on my bottom/pain but I don't really have any other worries in my life so It's hard to know where to look.
 
BloodMoon said:
I have sent you a private message about this - it should be in your 'in box' (top right hand corner of the screen).
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Would you mind sending me a hopeful message? I have this EXACT SCENARIO, fissure...healed...now pelvic and tailbone pain, unrelenting, one year. Thank you so much!
 
donavanf said:
Would you mind sending me a hopeful message? I have this EXACT SCENARIO, fissure...healed...now pelvic and tailbone pain, unrelenting, one year. Thank you so much!
Click to expand...

Hi! Just wanted to let you know that I've been completely free of any pain for over a year now . I failed going the TMS route. What did it for me was a low dose amitriptyline in the evening and a course of high strength painkillers. The meds helped me focus on the good things in life and I got better very quickly. After a couple of months and a gradual taper of the meds I was back to normal with no pain. I'd been in hellish pain on and off for 5 years prior to this. Now I won't advocate meds on this board since that's not the main focus here but whatever route you choose to go it's most likely that you'll be fine too.
 
donavanf said:
Would you mind sending me a hopeful message? I have this EXACT SCENARIO, fissure...healed...now pelvic and tailbone pain, unrelenting, one year. Thank you so much!
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I didn't have a fissure, but I did have an horrendously severe muscle spasm, completely out of the blue, when I was trying to pass a stool. Residual pain from this continued for about a year and then suddenly stopped. It stopped after I'd been fully checked out medically - scans etc., - and they could find nothing wrong, so I guess that eased my mind and told my brain that it was no use causing me symptoms in that area anymore.
twirlybird said:
The meds helped me focus on the good things in life and I got better very quickly. After a couple of months and a gradual taper of the meds I was back to normal with no pain.
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And I have to say that imho I think that @twirlybird was probably, by default, actually treating his pain as TMS...in his case, the pain meds allowed him to get on with life, and that's what virtually everyone on these forums who has recovered advises others to do. With me, a special 'cut out' foam cushion did the trick by allowing me to sit more comfortably and get on with life as best I could and to focus on other things. (I believe, Dr Sarno actually approved of using pain killers in some circumstances for severe pain, for instance...in 'needs must' scenarios.) I therefore think that the important thing is not to believe that you will be stuck with the pain for the rest of your life. (I do have other TMS symptoms and pain elsewhere in my body, but I'm endeavouring to doing the same thing with those symptoms - ignore them as best I can.)
 
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twirlybird said:
That’s entirely correct. I’m 100% sure it was TMS. In my case, masking the pain for a while really helped me push through it.
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This has given me something to think about. I’ve been struggling with the TMS approach for almost two years. The ups and downs, I think, indicate a mind/body root. I mean, sitting down irritates the nerve? Really? That does seem silly. And yet, the pain is immediate and real. And just pushing through it isn’t working.

So you benefitted from amitriptyline and other painkillers? May I ask what those were?
 
tmstraveler said:
This has given me something to think about. I’ve been struggling with the TMS approach for almost two years. The ups and downs, I think, indicate a mind/body root. I mean, sitting down irritates the nerve? Really? That does seem silly. And yet, the pain is immediate and real. And just pushing through it isn’t working.

So you benefitted from amitriptyline and other painkillers? May I ask what those were?
Click to expand...

When I had the last bout of pain, which was the worst period ever, it was Oxycodone 5 mg slow release in the morning + 5 mg immediate release as needed along with the Amitryptiline. Nothing else seemed to make a dent in the pain. Came off them as soon as I felt the pain abate. I don't like to recommend opioids, there are obviously downsides taking them, but I had no choice really. It took about three months with this regime and I'm still fine 2+ years later with no meds. Had pain for around 6 years all in all.
 
Wow. Seems risky but I’m glad it worked for you. I don’t have any meds as an escape valve and it’s tempting but I’d worry about all the problems they bring. In the long run, I feel I’m better avoiding meds and doing emotional work. It’s just hard when the pain reaches extreme highs.
 
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