jg6075's Case/Rambling Story

[jg6075]

I feel like I've explained/typed a lot of this stuff out a million times before, so sorry if it's some stream of consciousness rambling.

I'm 23 and I've been dealing with CPPS for about 2 years now. There have been periods of immense discomfort and pain, but also some periods where I've been almost normal. My symptoms are varied, with some being mainstays and others appearing every once in awhile. Common symptoms: PERINEAL PAIN basically constantly, dysuria, painful ejaculation that leads to flareup (not all of the time), pain in tip of penis, sometimes pain after voiding, and sometimes general pelvic pain near the lower abdomen.

I've noticed certain things increase pain, but most of these triggers don't trigger the pain instantly. For example, I could go running/lifting and not notice anything, but then pay the price hours or even a day later. Said activities include running, lifting, sitting, and anything sexual really.

As for my background, like many people here I've always been anxious. I bottle things in, tense up a lot, and have trouble relaxing. I constantly think and fear the worst, even though I'm aware of it and trying to address it. The months immediately prior to getting CPPS, I was into weight lifting (squats, benchpress, deadlift, etc) and running (5-7 mile jogs) with questionable technique. One evening during August 2012 I was a 'normal' person going for a very short jog, which I ended early. Within a day I started noticing the symptoms, and within a week I was suffering. It was seriously like a switch had flicked. It should also be noted that this all during a very stressful time, where my family was moving out of my childhood home, and classes were about to begin again. I spend a lot of time thinking "what if I hadn't gone for that run, would I be normal now?" Or perhaps it was building up and something else would've triggered things.

Anyway, after the antibiotics and numerous doctors song and dance we've all gone through, my symptoms moderated to "high level annoyance" with periods of flareups that can be quite unpleasant. I've been told things ranging from Prostatitis to IC, but nothing with supreme confidence. I've taken the following with no success: antibiotics, anti inflammatories, anti anxiety, Flomax, and various supplements. I even did deep tissue massage, which helped my back but didn't do much otherwise. Based on the above story and my tendency for anxiety, I've maintained that these issues were muscular or nerve related, but haven't really had the ability address or confirm that.

Here are some things I've noticed. First, there is an area in the perineum I can touch that is painful to the touch at times, and feels knotted or tender (hard to explain) to me. If I clench that muscle area in an exaggerated Kegel style, I can also trigger several of my symptoms. I've noticed it will even burn/itch at times, and that certain motions make it feel like something is tearing there. Very strange.

Also, I took the infamous drug Accutane several years before getting these symptoms earnest. However, I noticed after taking it that I would sometimes get symptoms like painful ejaculation very rarely, and when that happened I would get symptoms very similar to what I have now. They would disappear in an hour though. After CPPS though, all these things become much more common/prevalent. I dunno if this a weird coincidence, or they are indeed related.

The final thing I notice at times is the sensation that the pain might be imaginary or is deferred to an unrelated area. This is really hard to explain. I know the pain is there and is real, but it almost feels more abstract or dispersed to a different area. Does that make sense at all...? Haha.

Anyway, thus concludes my novel. I figured I'd be as through as possible, so some passerby could make some connections his case, much like I did with previous threads here. I guess I was wondering what the best approach would be or if my story sounds at all familiar.

Thanks and good luck.

[webslave]

Almost a textbook case. Your best strategy at this point would be to read the Success Stories and other forums. Use the Search function to narrow down queries.

[Sleeper Service]

I wouldn't worry about the run. It's highly unlikely to have caused any problems.

I did some of my best running and lifting in the 6 year remission I had with no problems at all, so I don't think it's a factor here.

[Caedar]

The final thing I notice at times is the sensation that the pain might be imaginary or is deferred to an unrelated area. This is really hard to explain. I know the pain is there and is real, but it almost feels more abstract or dispersed to a different area. Does that make sense at all...? Haha.

Absolutely. The pelvic region is highly innervated, with many nerves converging from various organs and tissues into the same nerve plexus. It's not surprising that the pain feels dispersed or abstract, but with experience it should become easier to pinpoint where it's coming from.

[jg6075]

Thanks for the help, guys. Honestly, knowing my case is fairly generic is somewhat encouraging, and any positive progress at all would be great. I'm going to look more into pelvic floor PT and read more about relaxing/chilling out in general. It's good to know the running may have been a weird coincidence, too.

[Caedar]

As far as running goes, just make sure you have some good running shoes that are the appropriate type for your running gait. Reducing the impact on your pelvis will help a lot.

[jg6075]

Excellent, I'll have to look into that. Of interest to me (but probably common sense to you guys haha): I got a deep tissue massage recently, and the therapist noted illiacus muscle (sp ?) was extremely tense and that it could be affecting the pelvic region, including nerves, a lot. She mentioned a lot of things that I've read here and elsewhere, such as focusing on relaxing the muscles meditation or anything that will reduce the tension. Whether that stuff is accurate or not, it feels encouraging to actually be pointed in a direction with confidence for once.

[jg6075]

Hey all, just checking back in looking for some advice.

This might sound weird, but I think I've been complacent for awhile. I haven't had a day without symptoms for around 2 years now, but I'm mostly functional and have adapted a bit. There's still some scary moments and I feel like I just get systematically broken down by discomfort sometimes. But, I've kinda reached a place where things are fairly predictable. The problem is I'm afraid to confront things head on, and leave my weird new comfort zone. Literally every CPPS webpage except these forums is all doom and gloom and lots of people listing things like physical therapy, relaxation, diet, etc. as not working. It's discouraging, and I end up just going back to trying to ignore things.

That being said, I was wondering where the best place to start with routine relaxation would be. I know that's a weird question haha, but I feel like I'm lacking direction with what I should be doing.

[webslave]

Book called Paradoxical Relaxation
https://www.amazon.com/dp/0972775587
(The negative reviews of the book are mostly written by the same individual, a stalker called Charles Kramer])

Relaxation CDs
>link dead

[jg6075]

Just an update, for myself and for others:

I've realized the importance of the mental aspect in all this, and things are starting to click. I've noticed a bit of improvement this past year by 1) not worrying about chronic pain, and actively not letting it get to me; 2) relaxing, living in the now; 3) Not letting the condition take control. In other words, the most progress I've made has been after abandoning the mindset of any one solution just magically curing me. Honestly, just chilling out and learning not to worry is beneficial in so many ways. It's all about incremental progress and hard work.

Another thing, I visited a urologist, who (very surprisingly) referred me to a pelvic floor specialist. The therapist has helped identify my trigger points and further help me with relaxation techniques + stretches. Honestly, having someone who can answer all your questions, and has seen all of this before, makes an incredibly huge difference. I still have a very long ways to go, but for the first time since this has all I started, I feel like I'm back in control.

[webslave]

Excellent!

[jg6075]

Hey all, I wanna post a personal discovery of the power of the mind. The past few months, I've been going through the motions - nothing really bad, steady improvements on average. However, I've noticed a trend. First of all, I, like many on here, deal with anxiety/depression/OCD and generally have an anxious disposition. Bearing that in mind, I had a particularly stressful week a couple of weeks ago, culminating in some depression. While feeling depressed, I noticed the same discomfort that was previously background noise was actually getting to me way more, and I was close to having the first genuine flareup in a very long time.

Anyway, I talked with counselor, and he managed to defuse the situation and give a pep talk regarding my constant negative thinking, and the power of positive thinking. The way it was phrased made me realize I've been electing to indulge a lot of negative thoughts regarding my health, future, etc. So for the week after that, I made it a point to simply not indulge those thoughts and relax a bit more in general. Easier said than done. The results, though, were almost immediately reflected in my most recent PT visit, where my biofeedback, muscle tone, and general response were the best they've been ever. It was definitely not a coincidence. Long story short, it really demonstrated to me the role of the mind in all of this.

Unfortunately, I've kinda relapsed back into my anxious ways this week, but that was honestly all the proof I needed to mend my ways. Just try to stay positive always, even if it means faking it 'til you make it.

[webslave]

Isn't it strange that we can choose to be well and happy?

[jg6075]

So, for me, I've been making super incremental positive progress. Basically, regaining control over small aspects of my life at a time, all while not consciously realizing it. However, today I had my first mini-flareup in a long time; the stabbing nerve pain, the wind-out-of-your-sails abdominal crushing thing, etc. and I feel discouraged right now. Granted, even that wasn't as long lasting as a couple years ago, but I still feel like I'm blindly stumbling forward sometimes, instead of with authority. There's something really discouraging about this kind of pain, even in the face of objective improvement on the macro level. It can be hard to find the cause of a given flareup, other than the usual suspects such as stress. How did everyone stay tough in these sorts of temporary setbacks?

[webslave]

Setbacks, flare ups, graph of decreasing amplitude

viewtopic.php?p=43794#p43794

Patience is a virtue