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My Story (Feeling better but not 100%)

Posted: Mon Jun 21, 2021 10:03 pm
by Dylan_36
Hello Folks,

My name is Dylan and I am new to this forum but I have been in correspondence with Webslave since the onset of my symptoms, I also spent some time on r/prostatitis but I left due to the massive amounts of belly aching and "poor me" type of men there, who would cause me to catastrophize myself.

My symptoms started 4 months ago. The first thing I noticed was sciatic like nerve pain in my penis and testes. It felt like they were on fire.
Then the urgency came, then my hips started aching, then my pelvis (pubic region and perineum) started to ache. Just like the book, the phrase "Headache in the Pelvis" 100% described what it feels like for me. The same feeling of a headache, except down below.

I of course took the urology route to no avail. Got tested for everything under the sun and was all negative. The urologist sent me on my way with nothing more than a "good luck" As a member of Generation Z, I did what we all do and took to the internet for answers, to which I found them here and on reddit. UCCPS perfectly described what I was going through.

Here is how I knew it was UCCPS. Both Webslave and Dr Wise, who I consider to be the world's premier experts on the subject both described the type of men who get UCCPS, and to the T they described me. I have PTSD from an abusive impoverished childhood, and as a result I am chronically in fight or flight, I constantly worry and presume that outcomes will end unfavorably for me. I also sat for work, 40 hours a week, in a chair, dealing with the stress of working in the defense industry.

Here's how I got better. I quit my miserable job and I found a new job at a young, hip, happy start up that has standing desks. That was the first step.
I know this isn't an option for everyone but I am 23 and have no kids. I listened to the words of Dr. Wise and Webslave to a T. I began following the tips section of this forum to a T. I stopped lifting weights and just started using a stationary exercise bike set to low resistance. (I feel like this helps loosen and heat the muscles before stretching and trigger point release, it 100% calls for a better stretch and trigger point massage) It does not have the same intensity as a run or a jog and does not cause the muscles to tighten, in fact for me personally it loosens them. I tried quercetin for 3 weeks but it made no difference, what did take the edge off my symptoms was a combination of Cialis and PEA (Palmitoylethanolamide) both of those substances in tandem take the edge off. They don't cure you, but they make the pain... less painful I guess you could say.

I am now 4 months into this curse, and I am combating it with 2 stretch sessions daily, as well as 1 trigger point release session (internal and external) I have also made a major, major, major effort to change my world view and to stop constantly worrying and stressing. See a therapist if you need to because this condition is 50% mental. I don't care what anyone says, it is for sure 50% mental.

Some days are worse than others, most days have become bearable. At the start it was crippling, now it is just a mild annoyance. I have faith that if I continue the course I am on, I will make a 100% recovery by 2023. I truly believe in my body's ability to heal. If you convince yourself you won't heal then your body won't put in the energy to heal.

I will end this post by saying : IT IS NOT AN INFECTION. If it was an infection that was left untreated for as long as most people suffer from CPPS, it would turn into sepsis and you'd die.

Also LISTEN TO WEBSLAVE AND DR WISE!!!!! Those men are the experts. You wouldn't ask a janitor how to repair a fighter jet, you'd listen to a fighter jet mechanic. Webslave and Dr Wise are fighter jet mechanics in this world, and all the other idiots on reddit and the internet are the janitors.

Good luck fellas, just don't give up and have faith.

Admin comment: 👍

Re: My Story (Feeling better but not 100%)

Posted: Sun Jun 27, 2021 12:00 pm
by European
Encouraging words. I agree with everything written above. I would say that with prolonged course of CPPS, the mental side of the problem prevails even more than 50%. Guarding defensive mechanisms with underlying anxiety are the essential fuels of this vicious circle and are very hard to combat even for mature, balanced personality. What makes this condition highly enigmatic is that (almost) all of us are battling the same enemy - psychoneuromuscular dysfunction of pelvis - but the individual manifestations always slightly vary. However, this webpage with hundreds of stories is one of the most essential cornerstones of my recovery (although I still have relapses).

Urinary symptoms gone when you have to poop?

Posted: Fri Jul 16, 2021 9:25 pm
by Dylan_36
Hey Guys,

Real quick, lately I have been noticing my symptoms are about 90% reduced when I have to crap, especially if it's one I've been holding in for a while.

Why is that?

- Dylan

Re: My Story (Feeling better but not 100%)

Posted: Fri Jul 16, 2021 11:06 pm
by webslave
A full rectum gives an inadvertent "massage and stretch" to the pelvic floor muscles.

Re: My Story (Feeling better but not 100%)

Posted: Mon Jul 19, 2021 1:03 pm
by Dylan_36
Webslave,

Do you think I would benefit from extended sessions of dilation? I have only ever done massage.

Re: My Story (Feeling better but not 100%)

Posted: Mon Jul 19, 2021 7:50 pm
by webslave
You could, especially if your problems are centred in a tight anal sphincter. There are various tools to accomplish this; search the forums for 'dilation' etc

Re: My Story (Feeling better but not 100%)

Posted: Tue Jul 20, 2021 3:00 pm
by Dylan_36
Webslave,

I think I have had a breakthrough. Without expressing too much detail on my bedroom life, my fiance told me that I have an unbelievably tight rectum.

In addition when I was in college I was very constipated and when I finally relieved myself I had CPPS like symptoms for about 15 minutes ( I can't believe I forgot this)

I am starting to believe that at least my urinary symptoms are originating there. I have done trigger point release but have yet to experiment with Dilation. I have ordered a set online and will advise on my results after 5 weeks of dilation.

Admin comment: Great, keep us updated!

Re: My Story (Feeling better but not 100%)

Posted: Wed Aug 18, 2021 1:47 pm
by Dylan_36
He y'all Quick Update:

I have made a number of additional changes to my routine which for two weeks had me feeling the best I've felt yet.
Unfortunately I had ANOTHER extremely stressful life event, and as predicted I am back to square one. Although now I am much more confident I can quickly abate flare ups by the additional practices I have begun. They are as follows.

1.) I was told I had a very weak core, and that my pelvic floor was over compensated for it. I added planks and mild abdominal workouts to my usual stretching routine. Some light glute work as well.

2.) I started taking Buspirone which is a mild anti anxiety drug.

3.) cut out gluten

4.) dilation for 15 minutes every other day. I never really let my sphincter stretch for that long, and I can totally feel the benefit of doing so.

5.) Controversial, but I picked up even more hours at work. I enjoy my job and the more I'm distracted from my personal life (where all my stress comes from), the better I feel.

Doing those 5 additional points for 3 weeks made me feel like 98% better for the first time in ages, unfortunately today I am at like 60% from last sunday's stressful event.

Re: My Story (Feeling better but not 100%)

Posted: Sat Oct 09, 2021 10:50 pm
by Dylan_36
Hey Folks, Update again.

Over all I am in a much better place than where I was when I started. UCPPS does not dominate my mind nearly as much as it used to and I sort of just learned to accept it. I came to a point where I realized if I never improve past this point, that's fine, although I would still strive to fully heal.

I have days where I feel completely normal, than I have some bad days here and there. Over all, I have more good days than bad.

I want to stress the importance of strengthening and posture. I feel like it is not discussed nearly enough in this community as well as Reddit. Everyone talks about stretching but if your core, glutes, and pelvic muscles are weak, they will continue to re-tighten. Since adding strength training to my routine, as well as focusing on holding perfect posture as often as possible, my symptoms improved to the best they have been. I do not think I would be at the point I am at if I just continued to stretch. Stretching is important but you'll just keep spinning on that hamster wheel until you strengthen your core. A weak core makes the pelvis over compensate.

All in all I think I'll be fine. More than anything, getting to the point where I fully surrendered to this condition has made dealing with it much easier.
I just got to a point where I'm like "bah whatever" "So what if my dick hurts, whatever" and just go about my day.

I wish you all the best.

- Dylan

Admin: 👍

Re: My Story (Feeling better but not 100%)

Posted: Wed Oct 13, 2021 12:03 pm
by antmanbird
I want to stress the importance of strengthening and posture. I feel like it is not discussed nearly enough in this community as well as Reddit. Everyone talks about stretching but if your core, glutes, and pelvic muscles are weak, they will continue to re-tighten. Since adding strength training to my routine, as well as focusing on holding perfect posture as often as possible, my symptoms improved to the best they have been. I do not think I would be at the point I am at if I just continued to stretch. Stretching is important but you'll just keep spinning on that hamster wheel until you strengthen your core. A weak core makes the pelvis over compensate.
I agree with this! My first CPPS period I defeated with mild targeted strength training, then added more. I get tightness and pain when walking and I believe it’s because my pelvic floor is compensating for something.

Re: My Story (Feeling better but not 100%)

Posted: Sun Oct 17, 2021 9:00 pm
by Dylan_36
Quick update:

Started amitriptyline due to the overwhelming documented evidence that it improves symptoms and in some cases forces them into remission entirely.

So far on 10mg daily for 2 days and feel no different although the professionals say it could take some weeks.

Re: My Story (Feeling better but not 100%)

Posted: Sun Oct 17, 2021 9:03 pm
by Dylan_36
antmanbird wrote: Wed Oct 13, 2021 12:03 pm I agree with this! My first CPPS period I defeated with mild targeted strength training, then added more. I get tightness and pain when walking and I believe it’s because my pelvic floor is compensating for something.
Absolutely, the only additions I made to my stretching routine was resistance lunges with resistance bands, squats with resistance bands, light dead lifts with resistance bands, as well as following some Tom Merrick YouTube videos for core. Tom Merrick Channel although not about UCPPS has tons of workouts that help UCPPS.

I prefer resistance bands to weights because you have more control over the level of resistance you’re working with and it is less strenuous.

Re: My Story (Feeling better but not 100%)

Posted: Mon Oct 18, 2021 4:26 pm
by antmanbird
Heh, that’s way more than I can do at the moment. I was doing glute (bridge, clam shells), abs (side plank, dead bug lying down) and back exercises (bird dog). Point is to strengthen the stabilizers so that (I guess) the pelvic floor can stop doing that work.

Re: My Story (Feeling better but not 100%)

Posted: Mon Oct 18, 2021 8:46 pm
by suffering
Dylan,
Do you still do the dilation?

Re: My Story (Feeling better but not 100%)

Posted: Fri Nov 19, 2021 4:49 pm
by Dylan_36
suffering wrote: Mon Oct 18, 2021 8:46 pm Dylan,
Do you still do the dilation?
Yes, and it absolutely helps.