Pelvic Floor dysfunction, anxiety, fear, etc

Hello everyone. This is weird. I don't even know where to start lol. I guess I'm here because I wanted to tell my story. Share what I've been through, how I'm here and hopefully I can get some good feedback and support. Within this post I think its best that I split it up into two parts. In reality there's multiple parts. But I see it as this; part 1 (15+ years), time 'suffering', my history, my pelvic floor dysfunction/symptoms, my mental health, and how I think everything started. Part 2 is the last couple of months, but also the arguably the hardest months of my life, physically and mentally. Part 2 is where my dysfunction turned into pain, how I learned about TMS, and where I'm at now. Please bare with me because I'm going to be brutally honest. My issues are quiet embarrassing. They have taken a lot of time from me. Its made me so self-conscious that I can't bare to live my life sometimes, I just exist.

Part 1
So who am I? I am a 26y/0 male that has been suffering from pelvic floor dysfunction since I was a kid. I believe problem started due to medical issue. I didn't like to poop as a kid. Around 10ish I had to go to the ER cause I was impacted. Idk why I had such a bad relationship with pooping. I dont know that this is exactly what started it but it makes sense. Constant tension to hold back poop, emergency room, then issues manifesting into my chronic symptoms. I do recall going through middle school very uncomfortable. I would feel this wet sensation in my anus, not knowing what it was. I would check my pants constantly to see if there was anything there. I would go to the bathroom to wipe all the time. This is when I became hypervigilant of how I was perceived. This is where my anxiety kicked in due to fear of judgement. I started noticing peoples body movements and how they would react when they sat next to me. I started feeling like I smelled bad, like gas or poop, all the time. I started believing that I did too, mainly because when I would go to the bathroom there would be something to wipe, so I had evidence. I always practiced good hygiene, sure we didn't have a bidet, but I always tried to be clean. Showered every day etc. But nothing helped. There was a handful of times where people actually said things, and that kind of still haunts me. This way of being continued throughout the years.
I had multiple doctors appointments, GIs, colorectal surgeons, etc. Nothing was really found. I think I did test positive for lactose intolerance. I had a colonoscopy at the ripe age of 14-15. Nothing found. Colorectal surgeons were seen near the start of college, where I did a balloon test and Anorectal manometry, where I was told I had very dysfunctional muscles and was recommended pelvic floor therapy. Later I found it was hypertonic pf. I never had really bad pain, but did have huge discomfort sitting. Especially on long car and plane rides. The discomfort was felt in my lower back, hips , and thighs/legs. I think this was because of the chronic tension I held in my PF, and probably because ive been in a fight/flight state for so long. Throughout school I become very lonely, I mean I had friends. I'd like to say I was friendly to everyone, no matter what kind of group it was. People liked me. But I was too scared to go out and live a normal young life. I was stuck inside a lot, and turned to drugs to help with my loneliness. Weed turned into pills, pills turned into alcohol at 21. The anxiety was rampant, the fear was out of control, I remember walking the college halls and I would actually hold my breath. I was in constant state of anxiety, panic and fear. Constantly looking over my shoulder to see if someone was behind me, to see if they were judging me.

What I know now about my issue is that the hypertonicity of my pelvic floor caused incomplete evacuation and leakage. Because I could never get empty the hypertonicity, anxiety/fear would cause smearing/incontinence. I wouldn't say that I would poop my pants. That was never the case, but I was just never clean, at least not for long. Diet didn't really make a difference.

To be honest I always thought "once I fix my PF issues I will be happy, and I will live a good life" but in reality it doesn't matter if my symptoms are there, I feel like I have to learn how to be a part of society again. Deep down im an extrovert. I love talking to people, but fear holds me back.

Part 2
Alcoholism began at 21 and didn't really end until this past May. Part 2 involves my experience with pelvic floor therapy. I didn't start pelvic floor therapy until July of 2024. It was a very long time since I had actually heard of PF therapy. But tbh I just didn't understand and I was kind of embarrassed to start. IT was also during a time where I was self medicating. In reality I have been avoiding/suppressing my feelings for years. Getting drunk and high was my escape because of just how bad I felt in my body. Drinking in reality also made my symptoms worse. But it got really bad. I was definitely an isolated drinker but after my breakup I couldn't stop. I would drink myself to sleep every night. Anyways I started PF therapy, it was a lot of internal manual release. I did over 50ish sessions in a year. Luckily most of it was covered under insurance. PFT wasn't the best because I was always irritated due to the alcohol.

MBS is MBS, but I think we can all agree alcoholism can cause severe inflammation and damage to your insides. So taking that into account, PFT didnt' cure me, I think in one way or another it did help. Like I felt like I could empty more and I didnt smell like shit so much. Fast forward to this past October, I was using a pelvic wand, for those that don't know PFT therapy involves self internal manual release with a pelvic wand. I loathed the fact I had to use it but to try and better myself I did. Unfortunately I didn't use it correctly and actually held too much pressure on a nerve. I believe it to be the pudendal nerve. I remember feeling numbness that popped up on my left side, my hand, arm, leg. Lower back pain then started. I was freaking out because I couldn't sit. THe pain was 8/10. I immediately catastrophized and turned into a very dangerous depression. I believe my nervous system shutdown more than it already was. I felt extremely dizzy, light and sound sensitivity, sense of doom, waking up with extreme stress, panic attacks. I also had desensitization in various parts. I really thought my life was coming to an end. Around that time I was actually talking to an out of network PFT, one that did dry needling, electric stim, cupping, myofascial release, etc. I did about 6 sessions and it did get me out of extreme pain. At least Id like to believe it. I can sit again, but long sitting sessions in planes/cars definitely get to me a little. While I was bed bound I was doing a lot of research and came upon TMS. So at the same time I was learning about it.

Fast forward to now, I'm a lot better then I was. I still feel extreme tension in my hips, pelvic floor. Coccyx pain. I still have incomplete evacuation and deal with the embarrassing symptoms. I still get a sense of panic from time to time and deal with a feeling of 'drunkenness'. One that gets worse at night. I find that before this incidence I had Restless legs syndrome, that is back. I feel like my feet burn at night, pins/needles, itchiness, etc, that goes away during the day.

Conclusion
I Feel like the symptoms before my accident were highly related to TMS. Ive heard a lot of success stories where people had similar symptoms related to pelvic pain, lower back pain, etc. but I always try to compare and find someone that had the 'disgusting' symptoms I have. I know I shouldn't. I guess after my incident I don't know where to go from here. I hope that I can get my nervous system to a state where I don't hold tension. But also wonder if I need to go back to a psychotherapy and dig deeper to what Ive been through. A lot of these coaches state that fear is what holds the symptoms and while I get it, its really hard to have these sensitive pelvic floor symptoms which hold a lot of stigma and live my life without fear. Its hard to be myself when other people might be offended by me being around. TBH When I would get drunk and be in public I actually had minimal symptoms, it felt like my muscles would be at ease and I could just chill out. Also I remember being on Xanax for my graduation and there was just a huge bliss. I didn't feel my symptoms. But that of course is not the answer. My symptoms are definitely worse in public, or walking around after a while. I could not feel tension in my hips in bed, but once I start trying to live my life I feel it. Even just standing or walking around the mall. They are worse when I can't evacuate completely.

Sorry that this was such a long post. I would appreciate anyones support/advice that managed to read through this. I'm trying to remain positive and learning a lot about TMS. Like many people that have pain or symptoms this is my last resort to try and live a life I never had.

 

Brad Pitt! I read your story. It’s heart breaking. And I’m so sorry you’ve had to suffer so much. Why is life so unfair? We will never understand why. But, I will tell you with complete conviction, that your “last resort” is actually the first resort. You’ve landed in the right place. There is a lot to learn, and it will take time. But there is support and hope here. You can heal. Have you read any books by John Sarno? That’s a good place to start. Welcome!

 

I'm gonna leave the advice to the oldheads here but just really actually give this a shot. The SEP, posting here asking questions, learning. I havent made a lot of progress symptoms wise but I've learnt a lot already.

We all have our awful stories and its easy to get caught up in em. You just have to let it all go and try to be a teeny tiny bit better each day

Edit: And just like you did here, ask for support. I'm not that good at offering genuine support. I cant really support myself properly and it just doesnt come as natural to me to support others with words. I'd just like to give you a hug mate. You're worth it and come give it your all.

 

Aw you poor soul, so young and been through so much!

This reads like textbook TMS, the panicky brain picks up on an area we naturally guard and has a much easier time creating believable symptoms.

I went through PN hell as well as other pelvic floor issues, additionally deal with a lot of the nerve stuff you describe, MB approached helped me a ton.

im linking a recovery story that I like, maybe you’ve seen it.

I like Dan a lot and highly recommend his vids. The structured educational program on this site is also a great place to start.

Gotta find a way to lower that stress bucket, i get it, you’ve been through a ton, but at its core TMS is an out of wack nervous system stuck in fight or flight, for some it’s caused by external circumstances but for many we are the lion our brain is terrified of.