Pelvic Pain, Feeling Hopeless

tmstraveler

tmstraveler

Peer Supporter
Hey, all. I’ve been at this for a couple years now with ups and downs, but these past few weeks have OWNED me. My pelvic pain (rectal tightness, burning) has come roaring back, not that it ever completely left. I can’t sleep. I can’t sit. It’s so bad that it’s all I can think about. I’m not proud to write that, but it’s the truth.

I have no doubt my brain is causing it but right now it just seems like it wants to kill me. I know the tenets of TMS. I know the “return to life” thing and “outcome independence” and “feel your emotions” but it’s just too bad right now. I’m non-functional. I honestly don’t know how the pelvic success stories did it.

I’m barely hanging on. I managed to get a pelvic pt appointment for Wed (sue me) because I’m hoping for just a little relief. I don’t know what else to do. I feel like I’m failing at this. It’s so bad all the time. I don’t want to give up, but I don’t know how to get out of this space.

I’m sorry for all the negativity.

No idea why I’m even writing here. Maybe I’m trying to coax out a pelvic pain survivor to share some wisdom, though I know that probably won’t help. I’m in the grip of it: the pain, the obsession. I’m scared, folks. There’s no clear way out of this and I have been TRYING.

I don’t want to give up but I can barely move. How many days, weeks of “this is just temporary” can one person do?
 
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Coming back to say sorry to be that guy, but it’s where I’m at. I’ve been better and I have to remember that my body knows how to be better. I’m just having a hell of a time. Love to you all.
 
First, I just wanted to say that I'm so sorry about what you're going through. It sounds really difficult. :( I hope you feel better soon. Don't beat yourself up about being negative; we're all negative sometimes.

I haven't dealt with pelvic pain specifically, but I have dealt with other pains/fibromyalgia that have definitely improved!

Is there some new hobby you can try? Something new to occupy your mind? A new club or new people to meet? I have had pains disappear once I found something new and exciting to occupy my time.

How is your self-esteem? Do you feel good about yourself? You have to like being yourself! Maybe you already do. I'm just throwing this out as something to consider! :) Do you find purpose in your life? Do you believe that you're worthwhile? Is there a way you can volunteer and give back to others? (That helps me feel good about myself.) If the pain makes you feel worthless, you have to rise above that feeling of worthlessness. Be happy to be yourself. Celebrate your accomplishments.

Do you feel guilty about something? That could be causing that type of pain. Do you have resentment towards someone? Was something stressful going on when the pain started? Do you have fears/worries that come up a lot? Those could be causing the pain. Do you feel safe and secure? Were you criticized a lot by someone as a child and now still criticize yourself? How is your self-talk? Are you lonely? Do you need more human interaction and love?

Do you suffer from perfectionistic tendencies? Are you a people pleaser? Do you work too hard? If so, can you add more fun to your life? Do you ruminate on the past? Is there someone (including yourself) that you haven't forgiven?

Also, why do you think these past few weeks have been harder? This could offer some type of clue as to what is causing it.

Just a few thoughts; sorry if you've already considered them, just thought I'd throw them out there. Hope you feel better soon!
 
Thanks for the reply. You’re very kind. I definitely fit the TMS personality to a T, but right now with the pain at a 10, there’s not a lot of hobbies I can think of. It’ll come down, I’m sure. But for now it’s pure agony.

I struggle to apply the TMS approach to something that is so extremely painful while sitting, lying down, walking. How do you watch a TV show like that? Or sleep?

But again, I’ll have to believe it’ll come down. It’s all I got.
 
First let me say that you have my complete empathy. It's absolutely crazy how much our bodies can hurt. Please remember that Sarno himself said that TMS pain was some of the worst pain there is.
So, let me ask you, what kind of TMS tactics have you used? Tell me about your daily TMS practice. And how long you've been practicing.
Much support being sent to you.
 
Hi Ann. It’s been a lot of returning to life despite pain. I have also done somatic tracking and self talk. And I’ve begun exploring being more emotionally aware in my body.

I’ve had ups and downs. But I think the TMS wiki culture of “just sit through it even when it’s insanely painful” isn’t working for me. And yet, I can’t deny that the ups and downs imply a neuroplastic component. While I do believe in learned pain, I think I may need to circle back and get some bodily symptom relief as well so I can *continue* the work of allowing my brain and nervous system to come down. Because as it stands, with this sort of issue, I don’t get much of a break.

I know everyone here is pretty dogmatic about doing nothing physical but every situation is different and I’m *not* rejecting these principles. But simply put, if you have an irritated nerve, continuing to irritate it probably works against the brain feeling safe. It just retraumatizes you. Conversely, walking around in fear of irritating it doesn’t help either. That I get. That fear will keep the pain alive.

So I must find a balance to allow myself to live—not angrily blasting my body while also working to teach my brain that I’m safe—because adopting a “it’s all in my head” approach while the pain spirals is kind of killing me. I can’t sit and watch TV with people while my whole lower half is on stabbing fire. I need to bring the levels down a bit if possible.
 
Of course you do. If it helps, I absolutely continued with my pain killers while I first started out. And I'm 100% symptom free now. You can be gentle with yourself, compassionate with yourself and STILL do this work. I think folks get in trouble when they have black and white, all or nothing thinking.
 
And that’s just it. My attitude has been very black-and-white. And it’s been exhausting. Thank you, Ann. I’ve got a renowned mind/body coach and I’m adding a pelvic pt to my team. Is it possible that it’s ALL neural pathways? Yes. Is it possible that my pudendal nerve is angry and needs a little love too? I think so. I wish I had a painkiller that worked, but I realize that can be a slippery slope.

Look, it’d be great if I could feel all this crazy pain late at night in bed and say “I’m safe” but it’s gonna take more work to get me there. And that work could look like a viable medication or something of that nature. It’s humbling to admit I need to dial down the TMS intensity, and I hope I’m not offending anyone, but admitting my own vulnerability here feels right.

I don’t want to stay in pain, obsessed with the physical. But I need to move more gradually I think. That’s all. Because I’m running out of road, Ann. Just trying to rawdog it TMS-wise. I can journal *and* get physical help (not surgery or anything nuts like that).

I’m just trying to keep this kid (me) in the game. I’m worried about him.
 
Yes. Go slowly and carefully with the utmost compassion toward yourself. Seriously. Look for those tiny moments of proof that it’s mind/body. Start to build the case up again in your own mind.
 
No doubt it’s a whackadoo nervous system at play, turned into knots by a combination of emotional and situational factors. This is such an inspiring and powerful community and I honor everyone here. I guess I just wanted to confess my struggle and admit that I need to make adjustments. Feels right. Feels honest. But the core concepts on this forum are the correct ones.

I just read @plum ’s story. Incredibly compelling and a reminder that there are multiple paths to finding mind/body peace. My work continues.
 
tmstraveler said:
I’ve had ups and downs. But I think the TMS wiki culture of “just sit through it even when it’s insanely painful” isn’t working for me. And yet, I can’t deny that the ups and downs imply a neuroplastic component. While I do believe in learned pain, I think I may need to circle back and get some bodily symptom relief as well so I can *continue* the work of allowing my brain and nervous system to come down. Because as it stands, with this sort of issue, I don’t get much of a break.

I know everyone here is pretty dogmatic about doing nothing physical but every situation is different and I’m *not* rejecting these principles. But simply put, if you have an irritated nerve, continuing to irritate it probably works against the brain feeling safe. It just retraumatizes you. Conversely, walking around in fear of irritating it doesn’t help either. That I get. That fear will keep the pain alive.

So I must find a balance to allow myself to live—not angrily blasting my body while also working to teach my brain that I’m safe—because adopting a “it’s all in my head” approach while the pain spirals is kind of killing me. I can’t sit and watch TV with people while my whole lower half is on stabbing fire. I need to bring the levels down a bit if possible.
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Hey, TMStraveler,
I empathize and hope your finding moments of relief. I know it's hard when the pain is up. I tend to put myself under a lot of pressure and have to unplug from the idea that there is One True Way to "turn the corner" on one's symptoms. When I've been in pain--low back, cramped glutes, etc.--I'd use a small massage machine to get some temporary relief. Or I'd take Tylenol. Once I stopped seeing those things as cures or fixes, but simply as ways to get a little local relief, I was okay. I keep reminding myself it's a brain thing--and do the stuff that Ann mentions--and try to take it a moment at a time, which means trying not to get caught up in worry-thoughts that just rev my fear and make things worse. A way out has been to lean into life in whatever ways I can and not judge the effort or effect, but just sweep the floor a little bit, or shoot an email to someone who could use an email, or give some attention to making myself a decent sandwich. A little review of tms wisdom is helpful. For me, heavy on the "little" is good to remember. I know what I need to know at this point. I review until I feel I have what I need, and then to back to sweeping, or reading something interesting, as well as finding and using ways that demonstrate authentic kindness to myself, which helps me to see when the judge or the critic has snuck back in and needs to be sent packing once more. Notice pressure on yourself. Sometimes people like us have no idea that we've put ourselves under two miles of seawater and are flattened. Notice pressure, wherever it is, and find your way to ease up and go as light as you can. Good luck and keep with it. Keep crafting your way. Glad you posted.
 
@tmstraveler and @Northwood: tmstraveler: I have been reading your posts and I just wanted so say hang in there and I'm sending you some positive energy. If you are in real pain and feeling down I know that doesn't count for that much, but sometimes just knowing you are not alone is a tiny help. I do so appreciate the people on here. I firmly believe that I will get better and that you will too.

By the way, you probably don't need any more TMS resources but I have come to appreciate Dan Buglio's little daily YouTube videos, which are typically like 10 minutes long. He posts something literally every day and it's just him giving a little pep talk or words of wisdom, or encouraging tidbits. He almost always films them out-of-doors, and it's just like listening to a calm, wise uncle who has been through it all. He also has posted longer success videos https://www.youtube.com/playlist?list=PLRJmnkn2kTTIFQdggCj5blCYWTENhppHs, I see some of them deal with people overcoming pelvic problems.

@Northwood: great post. I too sometimes just keep track of the tiniest of little baby steps that I can made, something that the old normal me would have done without hesitation, as you say, sweeping, or doing yard work or going to a store where I know I will have to stand, etc. And bonus points if it is directed at helping someone else. I journal all these tiny "successes" at night, as evidence to myself that I am a normal, regular guy who can live a normal life (or moving in that direction).

You mention low back and cramped glutes: how are you doing now? I got the combo package of low back pain, then moved to pelvis pain, but also have what feels like incredibly tight quads and glutes. Have naturally been the whole route of numerous doctors, PT, chiros, etc, and am now 1000% sure it is TMS. Basically hyper nervous-system induced symptoms.

I'm also trying to not do too much "TMS work" or thinking about it too much. As you say, at this point I basically know everything I need to know.

Faith my brother.

James
 
Yes, tmstraveler, there are many paths to feeling less symptoms and what worked for one person or even one type of pain processing may not work for another IMO. This is exactly what I try to help folks with.
 
Well, folks. It’s totally TMS. Mind body. Neuroplastic. I saw my former PT, a sweet honest woman, who confirmed there’s nothing abnormal. *Sigh.* The desire to be fixed by someone, it’s so strong. It’s a trauma response.

And after this insane weeks-long 10/10 flare, my resolve weakened. But the truth is this is learned pain. I know all I need to know. Now is just the hard work of living. Letting my nervous system relearn safety.

So I’m recommitting to addressing this psychologically. I refuse to go down the dark path of medical mad science. I got lost but thanks to all who held my hand these past couple of days.
 
hawaii_five0 said:
I have come to appreciate Dan Buglio's little daily YouTube videos, which are typically like 10 minutes long. He posts something literally every day and it's just him giving a little pep talk or words of wisdom, or encouraging tidbits. He almost always films them out-of-doors, and it's just like listening to a calm, wise uncle who has been through it all. He also has posted longer success videos https://www.youtube.com/playlist?list=PLRJmnkn2kTTIFQdggCj5blCYWTENhppHs, I see some of them deal with people overcoming pelvic problems.
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I'm a big fan of Dan Buglio. I've been following his YouTube post for nearly two years. Also, I just spent a couple of months as a member of his weekly group coaching sessions. I found these sessions very helpful. Good to hear other people telling their stories in a honest yet solution-oriented way. And Dan is a skillful facilitator: calm and insightful. He's come up with what I think are effective, compact ways of "nut-shelling" tms fundamentals. His work has played a significant role in my recovery. I agree with everything you say about his YouTube posts--a consoling ten minutes or so of Loving Calmness. All this said, he's not a big fan of unearthing old traumas via therapy, etc, getting hooked into that, and I see his point. Yet, in my case, unearthing old traumas (with a good therapist) has played a critical role in my getting better. It's useful to point out that one doesn't have to rehash a thousand lousy memories. A few key memories epitomize a whole category of disaster and once they are dealt with appropriately, the cycle can be broken, the emotional pain healed. Anyway, that's been my experience so far, and that work has helped me shed symptoms. We all have to find what works for us, and that invites trial & error, much to the endless shock of the perfectionists in us.
 
hawaii_five0 said:
You mention low back and cramped glutes: how are you doing now? I got the combo package of low back pain, then moved to pelvis pain, but also have what feels like incredibly tight quads and glutes. Have naturally been the whole route of numerous doctors, PT, chiros, etc, and am now 1000% sure it is TMS. Basically hyper nervous-system induced symptoms.

I'm also trying to not do too much "TMS work" or thinking about it too much. As you say, at this point I basically know everything I need to know.
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Hey, James, Glad to say I'm doing a lot better with the low back/cramped glutes. It's still around, but I fully accept it as TMS and am even beginning to sense how my emotions activate physical sensations and tensions. Buglio pats himself on the shoulder and says, "I got this" or "I'm good." Simple stuff like that makes a difference, at least it has for me: demonstrating to your body in a physical way a truth that you are somewhere on the way to accepting, but not fully there yet. Bit by bit it comes together. I got all of this info/truth in books and from another great TMS coach, but I had to work with it for nearly a year before my ass finally started to relax. Thank heavens, I'm done with "the whole route of numerous doctors." When I was in the thick of all that, I now see, I was sending my back and behind and everywhere else the wrong message, and I stayed stuck in the pain/fear loop. "1,000%" is an encouraging number. Calmness, presence, and the acceptance that it's a brain thing all go a long way to keeping the needle pointing at that end of the scale, imho.
 
Northwood said:
Hey, James, Glad to say I'm doing a lot better with the low back/cramped glutes. It's still around, but I fully accept it as TMS and am even beginning to sense how my emotions activate physical sensations and tensions. Buglio pats himself on the shoulder and says, "I got this" or "I'm good." Simple stuff like that makes a difference, at least it has for me: demonstrating to your body in a physical way a truth that you are somewhere on the way to accepting, but not fully there yet. Bit by bit it comes together. I got all of this info/truth in books and from another great TMS coach, but I had to work with it for nearly a year before my ass finally started to relax. Thank heavens, I'm done with "the whole route of numerous doctors." When I was in the thick of all that, I now see, I was sending my back and behind and everywhere else the wrong message, and I stayed stuck in the pain/fear loop. "1,000%" is an encouraging number. Calmness, presence, and the acceptance that it's a brain thing all go a long way to keeping the needle pointing at that end of the scale, imho.
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Thanks @Northwood. Your posts are really informative and helpful! I feel like there are some similarities between us and hearing that you have improved and shedding symptoms is super encouraging.

Yes, I was thinking of trying the Dan Buglio monthly meetings, but even his daily free YouTube posts are gold, imho. He seems to be really giving of his time. His style really appeals to me, in a very calming regular-guy kind of way. It resonates with me anyway. His focus seems to be just live your life, find ways to stay calm, and basically stop trying to fix yourself, and it will all come to you. I feel like that is what has eluded me. I had a great little experience today which helped reinforce this: I was moping around the house feeling pretty uncomfortable - I very recently retired, so that is also an issue - I couldn't sit or even lie down and feel really comfortable. So I said f*ck it, and - I've been wanting to do this for months - got my basketball and and went to the local park and shot hoops, just me (I used to play a lot of b-ball in my youth, and there is still a lot of muscle memory there and pleasant associations). I felt totally fine (except sucked at actually getting the ball through the hoop) - in the entire time I was shooting around nothing hurt. This is trotting back and forth, chasing the ball, twisting, turning - no back pain, no pelvis pain. Yeah my legs feel weird and tight, but it didn't hurt. It was also a gorgeous fall day, and just being outside is a tonic. So that was like "wow, how is that possible? ". But I think the more of these encouraging experiences I have, the more likely I am to get on the right path. I am going to go out and shoot baskets every day now, even if it snows, haha.

Thanks for your words.

(@tmstraveler: I hope you don't feel like I have hijacked your thread here. I am still hoping for the best for you, and that good days are in your near future. I hear you about the "hard work of living". It seems like it should be so simple, but I know exactly how you feel. And I have had some very, very bad days too).
 
hawaii_five0 said:
Yes, I was thinking of trying the Dan Buglio monthly meetings, but even his daily free YouTube posts are gold, imho. He seems to be really giving of his time. His style really appeals to me, in a very calming regular-guy kind of way. It resonates with me anyway. His focus seems to be just live your life, find ways to stay calm, and basically stop trying to fix yourself, and it will all come to you.
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Dan is great that way. He hits the same points over and over. I've found it useful to hear those messages again and again; as I've learned and had more experiences (seen through a more informed lens) I find his messages sink in, in deeper ways. It's all cumulative. I'm re-reading Allan Gordon's new book, The Way Out, and I'm finding that a refreshingly simple summation of TMS wisdom. Dan doesn't use (or promote) somatic tracking, whereas Allan employs it extensively. Personally, I've found somatic tracking helpful in that it provides me an easy fear-less frame of reference for experiencing a symptom. It's been a good tool for me; it helps keep me out of the "freak out" zone, as Dan calls it (panic and all that goes with panicking).
 
hawaii_five0 said:
I very recently retired,
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That's a big life change. I've learned that symptoms can get set off by big things (Big Things) that I don't feel acutely. I might feel calm or managing well on the surface, but way down under I'm pretty chewed up--the death of my father a couple of years ago, for example. Have you explored the possible relationship between retirement and symptoms you may be experiencing?
 
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