Accepting TMS, Overcoming Regret (Pelvic Pain)

Hey, folks. I’m new to the forum and thought I’d share where I’m at in the hopes of getting some encouragement and support. It’s been a LONG year of pelvic (rectal) pain that has turned my life completely upside down—no longer working, lost my relationship. I feel like I’m making progress but just when I do, bam, a flare comes out of nowhere and shows me who’s boss. I suspect if I could fully let go and not fear the pain, it would leave, but it’s hard when it gets in the way of so much of my life!

I’ve almost completely accepted it’s TMS and that in and of itself is a huge step. Took me forever to get there.

My story:

I started feeling discomfort in my rectum about a year and a half ago. It began in a time of great stress but not exactly unenjoyable stress. I was just very busy. I assumed it was hemorrhoids or something and would go away. Three months later I was still uncomfortable so I saw a colorectal surgeon who said he could band my internal hemorrhoids.

What I didn’t realize at the time was that you could pretty much band ANYONE’S internal hemorrhoids. They are a normal part of the anatomy. But, hey, I figure it was safe and he does it a hundred times a week so why not?

I didn’t feel much better after that so I came back 3 weeks later and did it again at his suggestion. And then one more time after that. Then a month later I started feeling burning pain (not just discomfort) which progressed into intense rectal pressure, tension, and pain sitting down as the weeks dragged on.

I was devastated. And while the timeline doesn’t really match up, I couldn’t shake the feeling that this guy ruined my body. I should stress that all the literature online says this banding procedure is safe and noninvasive (it only took about five minutes) but of course, once I started having rectal pain, all I could think was “Oh no! This guy damaged me!” Or “Oh no! I have incurable hemorrhoids and they’ll ruin my life and I’ll be a joke forever living in constant pain.”

Yes, the anxiety was in full swing. As was my ignorance. About so many things. And it created an atmosphere of constant panic and dread.

Eventually, after several months of torture and seeing this guy over and over as he prescribed painful mentholated ointments, hydrocortisone suppositories, antibiotics, I was in terrible shape. I had even gotten some hematomas in the area (blood clots) and swelling. That still haunts me. I think “Well it must be structural!” Though to be honest, I haven’t had that symptom in a long time. Could have been a number of things from muscle tension, to all the activity going on in the area, hell maybe even TMS. Still, it was terrible and fights me over my eventual acceptance of TMS since the idea of swelling feels so damn PHYSICAL. *shudder*

Anyway, after months of unhelpful treatments, complete mental preoccupation, and worsening symptoms, I finally called BS. I looked online again for another answer and discovered pelvic floor dysfunction.

The symptoms lined up and I began pt right away. My pt is wonderful as is the clinic she works at. She sensed my extreme anxiety and suggested I begin work with the Pain Psychology Center. I did and am still working with them. Luckily, my pt believes in modern pain science and sees it as a crucial part of recovery.

I also saw three other colorectals who couldn’t find anything wrong.

Many months later, my pt says my muscles are much improved but this was terrifying for me to hear as my symptoms are not. I realized that I haven’t really been accepting the mind/body stuff and assuming it would be X number of pt sessions before I was cured. I was going to pt in desperation each week and doing the pain psych stuff just to keep my anxiety down. After hearing I was physically a lot better and realizing I didn’t FEEL much better, I decided to fully commit to my TMS work with my pain psychologist. My pt agrees that this can happen even after the muscles are a normal tone. The nervous system is creating pain.

That was maybe a month ago. I feel ready to fully embrace this approach but it’s hard. My journey has been long, painful, and full of emotional suffering and loss. I can’t shake this feeling of regret (big fear thought) that this in-office procedure must have destroyed the most sensitive area on my body. I know it might sound crazy but it was a fear that wormed it’s way in early on and I have a hard time letting go of.

I have to let go of it.

My pain psych believes I’ll beat this. She’s 100% sure it’s TMS as it comes and goes and can manifest as a variety of sensations—also in my hip, glutes, down my leg. It definitely hurts in the areas my pt works but we’re all under the assumption this sensitivity is amplifying sensations in these areas, creating pain in areas that shouldn’t hurt normally even if there’s some mild tension.

I’m working to not fear the pain. To face it and accept it. And to return to activities even though they hurt or scare me. I’ve spent way too much time in deep, deep fear and practically bedridden. It was a nightmare and I feel that also is something I must work to overcome.

Being on this forum is no doubt a form of preoccupation but I had an awful night and felt like reaching out. In fact, this awful night came after a day of relative comfort. There you go. More fluxations.

Hope I can do this. I’ve got great help. I just need to let go of the fear that I’m broken in some way.

Thanks, all. Let me know if this resonates or you have any words of encouragement!

P.S. This time of year is emotionally hard for me as it was when I started to go through all this. A year later I’m still in it and that’s tough to accept.

 

Hi there, I’m so sorry to hear of your struggles, it sounds like a truly awful year that you’ve endured. I also have pelvic pain and accepting it, not fearing the pain and stopping trying to “work it out” are my biggest challenges.....but I’m getting there! It sounds like you’re doing a lot to help yourself - starting PT , seeing a pain psychologist and coming onto this TMS site for help as well....all positive proactive stuff! A lot of people (myself included) take years to start with the steps you’ve already taken so take heart that you’re heading in the right direction.
I have only just joined this site and have started Alan Gordon’s pain recovery programme on here and I’m finding it brilliant, lots of good advice and encouragement not only from the course but also from the forum content after each days topic and I’m already feeling the benefit both physically and mentally.

Just wanted to let you know that there is hope and you’re not alone.
Hayley x

 

Thanks, Hayley. Today is just a rough one. I hate when I feel like I’m at square one. Especially when it comes on at night. Maddening.

But I need to emphasize that since I’ve started really adhering to the mind/body stuff, I’ve had some really good moments, even for several hours. I try to take hope in that. Hard, when I’m in the middle of a flare. And if something was physically wrong, I don’t think I’d get those stretches of little to no pain. At least I don’t think I would.

Good luck to you. Thanks for the kind words!

 

Great to hear that you’re having some good moments, these moments of reduced symptoms are reassuring evidence to us that we’re on the right path and good feedback for the brain to convince it that there is nothing physically wrong and that there is no danger so it can “knock it off!”
Since I started healing using this approach I’ve gradually increased the time that I’m without pain and can now go days without any pain at all which is amazing and something which at times I doubted could happen. I was a real sceptic with this approach, I work as a registered nurse in the uk and went down the path of conventional medicine for a long time but only when I started with this mind body work have I started to experience true relief from the pain. I think it’s normal to have doubts about the TMS diagnosis and it helps me to read how others have also doubted but still healed. I found this reply from Forest on day 3 of the pain recovery program very encouraging -

Day 3: Identifying the Source

 

This is great. Appreciate it, Hayley. I believe TMS is the only thing that makes sense and yet it can still feel like a lot to accept at times. It’s nice to know that reducing fear and living life might be enough!