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nuclearmonkey21716 karma

Wow! I rarely scan the IAmA subreddit and I can barely believe my eyes! I have been suffering from the same condition for the past 2 years (I am 25 now, the syndrome began when I was 23). I can completely sympathize with your sentiments about it being a dark place. At the peak of my condition I was in the darkest place I have ever been in, and it effects my life each and every day as the pain is constant, and never truly goes away.

As you seem to have found out, anything that makes your pelvis work hard can potentially flare your pain. This can be anything, such as peeing more than normal, any sexual activity (as you've mentioned), or making the muscles work hard. Here are things that have helped me get the pain under control.

  1. Cut out caffeine completely. It stimulated your bladder and even though you may not have to pee, you will feel like you do and constantly peeing with make the nerves in that area begin to act up.
  2. Cut out smoking. I've never quite figured out the cause, but whenever I smoked (weed, cigarettes or otherwise) my bladder became swollen, which caused the muscles in the area to tense up and flare.
  3. Drink very little alcohol, if at all. Similar to caffeine, alcohol will make you feel the urge to urinate a lot which stimulates the nerves in the area. I've found the affects of alcohol to be less drastic than caffeine so it has been possible to have a drink here and there, but only during times when I feel I am able to risk it.
  4. Similar to what lhwang0320 suggested, I just recently began pelvic floor PT. What they have told me is that as a very skinny guy, my posture is so terrible to the point where I basically use my butt to hold myself up. This puts a lot of strain on the muscles in the area. Improving posture and using your lower back as opposed to your pelvis to hold up your upper body up is immensely important.
  5. I haven't been able to avoid sex completely (I don't have the willpower) so I mostly accept the consequences as far as that is concerned. All I can say to that end is to be smart about it. Know when and where (which is real tough) and what you have going on so you can time things accordingly. For instance, if you know you need to be on the ball tomorrow, don't do anything that could jeapordize that today.
  6. As far as meds. I've taken Lyrica for almost the entirety of these two years and its help has been gradual if anything at all (so gradual its hard to tell if it helps). The problem with Lyrica is thats its really really expensive. What's helped me more is a muscle relaxer called Tizanidine (2mg) which I take at night. It makes me very tired but its affects have been very worth it.
  7. More generally, I can say just find something that you can do that will make you happy and take your mind off the pain. For me it was making music. Ideally it would be something you can do in your room that doesn't involve physical activity. It is crucial to have a creative in the darkest times. TV and movies never really did it for me, it needs to be something involved so you can really escape.

I hope these points help. Don't despair! These things take years to get under control but it will happen!

EDIT: sorry I fired off this response before reading many of the comments, you may already know all these things and more. I at least hope it helps to know you are not alone!

EDIT2: I totally forgot to mention that salty foods like french fries trigger my condition as well. Foods have been a real tough challenge to lock down but this is definitely the case for me. I've read different things for different people though

EDIT3: Thank you all for your (mostly) kind words and suggestions! I certainly didn't mean to steal any of OP's thunder but I do enjoy answering the questions. I rarely get to talk about this sort of thing. As lhwang0320 said anyone can message me if they need help with this, I'd love to chat more.

nuclearmonkey2535 karma

please do! In two years this is the first time I've conversed with anyone that has CPPS and more than a little curious