CPPS is taking my life from me (Brett's Case)

[BrettP]

So, I have been having awful symptoms, which everyone on this board is aware of as they are suffering them as well. I will detail mine, and if anyone would be kind enough to let me know how they are coping.

I'm currently 24, and have been suffering for 6 months. Ever since I got married, I contracted a nasty UTI at my bachelor party, and the hell started from there. I at first started Cipro to cure the infection, it worked. The infection then came back (got it from my wife whom id given it too in the meantime, what an asshole I am!?!), so I took another round of Cipro, it left for good, only after a night of binge drinking I began to get an awful feeling in my bladder, like a spasm. I could not bear the pain any longer, and went back to the doctor. He performed all the tests, ruling out infections and BPH. At this point, urinating was difficult (still is), and there was considerable pain. I was prescribed Valium at around 10mg/day to cure the spasm. The Valium worked wonders, and had me feeling great, in fact, I was normal for a while. I continued to take the Valium as directed. When I stopped taking it the chronic prostatitis / chronic pelvic pain syndrome symptoms started arriving.

Pain in the tip of penis
Pain in penis during ejaculation
Sore "chode"
Extremely negative and awful thinking (aka suicide, never getting better, fear of CPPS) -- Caused by the chronic prostatitis / chronic pelvic pain syndrome symptoms.

Before ever learning of the SP, I noticed the feedback loop between my symptoms and my anxiety of the symptoms.

A few months later I saw a urologist and had a urine culture done, a cystoscopy, and the urodynamics test. The results were that there was great tension in my pelvic region, and they started me on Uroxatral and physical therapy.

The therapist does the internal trigger point techniques, and no joke, within one month, I was feeling fantastic. I was running at about 70-80%. But, this last Sunday is when I realized the success curve was quite logarithmic, and the final 30% would take a long time to come to fruition.

I woke up with extreme pain in the tip of my penis, I can even feel it in my prostate, it is worse when I have to use the restroom (either function). I am distraught at this set back. It has truly done a number on my mental state, and thrown me back into the throngs of the anxiety, depression negative feedback loop.

I told the therapist my situation, and she did not seem surprised, and that she said it is common in men with this condition. And that it should go away as she continues to work on my TP's. -- Will it?

I'm losing hope, is there anyone out there who has solved the penis pain problem with success? I just can't imagine living like this for much longer, although the pain is not "severe", it is always present, and has truly started to decrease my quality of life.

Is there hope? I'm desperate for answers. I have ordered the book, and my physical therapist thinks we have made progress in the month I have been going, but this setback has really kicked my ass. Any help or advice would be appreciated.

[Canbob]

It sounds like from your description that you have found the right place. It also sounds like you are very knowledgable early into the process. Also, if your uro is not prescribing antibiotics and is sending you for PT ... you lucked out an got a good uro!

My advice is to calm down ... but you already know this. Things are going to improve. It might be slower than you like, but things will get better if you are serious about making them better. The more you worry the worse they will get. Just relax!

There is all sorts of good information in this forum. There are many guys just like you. Most are young but there are a few old guys like me. For me, even if I do nothing, just knowing what I really have eased my mind and things started to improve. I'm not better, but I'm at a point where chronic prostatitis / chronic pelvic pain syndrome is not the only thing I think of during the day. Hang in there ...

[carld]

Brett,

I think you are on the right track here early on and you have been rulled out of the serious stuff. So you know that your dealing with pelvic floor dysfunction that takes a lot of time to heal. Continue to read up on pelvic myoneuropathy and everything that you can do to get well.

The main thing to focus on here is relaxation and anxiety control. You are way off on that right now as we all have been there and know what you are going through....

Not sure I understand the UTI thing at your party before you got hooked, but my understanding reading your post is you banged someone else and you may have regreted doing that with the infection and all, thus the guilt and stress of that may have set off an already anxious disposition and tipped you over to full blown CP/CPPS. I'm not here to judge, that's not my point...But if this is the case, you have to resolve the inner demons man before you can really heal...

More resent research is linking this disorder to possible adrenocortical hormone abnormalities which leads to everything else....(look at the research thread by Dr. D and webslave)(Adrenocortical Hormone Abnormalities in Men with CP/CPPS) Lots of research needed to proove this though...The irony here that old school urologists that use to say this condition is in our heads and sent us on our way is after all, likely the cause. Still blows me away every time a new person comes on this board and states their stress and anxiety over this...Doesn't matter why or what came first the chicken or the egg, but anxiety regardless of what's causing the anxiety is the root of our problem....Good luck...

Cheers, Carld...

[BrettP]

I whole heartedly agree with the anxiety about the symptoms makes them worse. There have been times where i get better, then there is no anxiety, and something will trip it (fight with wife, job stress, etc) And the next thing you know, chronic prostatitis / chronic pelvic pain syndrome symptoms (not immediately, but maybe one or two days after, is this normal?). I didn't bang anyone, but lets just say there was some rough, drunken, long lasting lap dances, I think that definitely started the pain, but then it went away, only to come back. I did feel guilty at the time, but have let it go, understanding that it was my last night before I would give up all women, and it does not bother me, I look back on it now and laugh without regret.

I guess I'm trying to be as positive as possible, but its hard when so much concentration is paid to the symptoms, whereby your mind ends up inevitably making them worse. I use to carry my stress in my shoulders when I worked in trading, and now, somehow, it seems to have shifted to the pelvis, as I rarely get the neck pain from stress I use to -- but I do get a sore perineum. Feels like its burning.

It just blows my mind that such an awful thing can happen, some part of me wishes it was something serious ... but curable. I miss drinking, i miss partying, i miss my old life.

I am also trying to look at both sides of the coin, as although this is awful, it is forcing me to make changes to a life fraught with anxiety and bad habits. This has been a definite "Wake up call."

My therapist tells me that things will get better and that she has helped a lot of patients with the same symptoms as I, so that keeps me encouraged. I've only been going for a month. But it seems like the more intense penile pain started after the therapy began.(and this has set of a cascade of chronic prostatitis / chronic pelvic pain syndrome symptoms and anxiety.) I see that this could be positive, as maybe the tissue is starting to wake up and is swollen and affecting the nerves in the area, but at the same time, it hurts, and the cycle of pain begins, and I'm hoping she didn't make it worse.

I slowly find myself turning even more cynical than I was before -- which is not good, and I am also trying my best to not let this affect my wife, but I feel she is already depressed seeing what I'm going through and hearing me complain about it, and I understand that. Interestingly enough though, most of the time its better when she is around, and gets worse when she leaves! IMAGINE THAT!! lol :)

I guess some questions I have for the members here are this:

What are the effects of cigarette smoking?

What are good pain relievers besides opiates that are strong enough to stop this penile pain, but at the same time not hurt my recovery?

What are good stretches for the Levator Ani muscle group, besides the internal work?

Another main question I have is water consumption. It seems as though I have been drinking a normal amount of water, but not passing a normal amount of urine, I worry that this may affect my kidneys, although an ultrasound was done and they said everything was hunky dory, and that my prostate was "small." At this point, I've even forgotten what it feels like to urinate normally.. lol I remember the relief though, and I haven't felt that in a while. Also, in regards to urinating, can uroxatral have the opposite effect? Sometimes I wonder if taking this medication is all that beneficial. Before the invasive tests were done I was pissing like a champ(having my good days -- but still on valium), and then after that, and taking the uroxatral, I've not had that feeling.

If anyone can help guide me through this, and give advice to the questions asked, I will be greatly appreciative.

[carld]

I didn't bang anyone, but lets just say there was some rough, drunken, long lasting lap dances, I think that defintely started the pain, but then it went away, only to come back. I did feel guilty at the time, but have let it go, understanding that it was my last night before I would give up all women, and it does not bother me, I look back on it now and laugh without regret.

I remember my bachelor party was at a strip joint and I had so many lap dances and they even called me up on stage and the two chicks took off my cloths in front of the crowd....Good times....The next day my wife was getting dressed and I said please...no more naked girls...Lap dances are torture

What are the effects of cigarette smoking?

Well...you can answer that...smoking kills, so stop...

What are good pain relievers besides opiates that are stong enough to stop this penile pain, but at the same time not hurt my recovery?

Aleve (naproxen) as needed and low dosage Elavil 10mg (mast cell protector) and helps with anxiety...do a search
Quercetin...get your free sample through this website

What are good stretches for the Levator Ani muscle group, besides the internal work?

All yoga stretches are good

Another main question I have is water consumption.

Drink when your thirsty

Again read up in this forum and do searches

[BrettP]

I had the same strip club experience, and then I somehow convinced one to come back to my old place for an "afterparty" -- lol. Well, then it got really interesting.

The club was in the Valley, I'm from Northridge, I see you are a fellow LA person. Its good to talk with other people who have had the same/similar symtpoms. I'm trying to relax and keep at it, I think getting off the valium will be helpfull, although i heard the withdrawal can cause the chronic prostatitis / chronic pelvic pain syndrome symptoms to appear because of the anxiety it causes. In fact, this flare also acted up when I started reducing my dosages, I've gone down from 15, 12.5, 10 and am now trying 7.5mg/day, but a part in me wonders if i take the 15, will the symptoms go away as the muscles will relax ... it did the first time.

I ordered the book, looking forward to reading it, hopefully it will have some good ideas.

[carld]

I live in Woodland Hills so I'm right by you....PM if you want to talk, I would be glad to share what I have learned through this site to help you get well again....That's what this is all about...support.

Regarding your wife...This is an important aspect of CP/CPPS. The support from our spouses is key but and I have to do this....There is a fine line between letting them know you are in discomfort and having an off day and telling them every moment about your hell. Try to remember her needs as well and sometimes you have to play hurt. You are way ahead of the game here. Feel free to PM me if you would like to speak....

Who is your urologist and PT?

Regards, Carl...

[superuse]

Hmmm. Another stock trader like dell. Sitting 50 hours a week, lots of nice pelvic tension too, day after day. Almost a third of guys seem to have a one night stand or atomic masturbation session or such as a final trigger. Many fellows blame a UTI as (from said one night stand) their trigger but most have no formal diagnosis or identified bacteria. Pelvic floor problems manifest similar to infections, making the urine burn and hesitancy and such, so a UTI may not be involved at all.

Now all we have to do is find out you are an accountant, lawyer or computer guy and a bike,weight training, or running aficianado and you'll be a full fledged card carrying member.

welcome
--jjf

I had the same strip club experience, and then I somehow convinced one to come back to my old place for an "afterparty" -- lol. Well, then it got really interesting.

The club was in the Valley, I'm from Northridge, I see you are a fellow LA person. Its good to talk with other people who have had the same/similar symtpoms. I'm trying to relax and keep at it, I think getting off the valium will be helpfull, although i heard the withdrawal can cause the chronic prostatitis / chronic pelvic pain syndrome symptoms to appear because of the anxiety it causes. In fact, this flare also acted up when I started reducing my dosages, I've gone down from 15, 12.5, 10 and am now trying 7.5mg/day, but a part in me wonders if i take the 15, will the symptoms go away as the muscles will relax ... it did the first time.

I ordered the book, looking forward to reading it, hopefully it will have some good ideas.

[BrettP]

unfortunatley I got my start in accounting, still do my personal accounting like a corporate entity, moved to trading, and now do analytical work at an insurance company. Its strange, maybe I think about a change of career? Has that helped many people? ill go teach high school or something, my chair sucks too, I miss the Herman miller mesh chairs i had while trading. Coudlnt do a 15 hr day without them... lol

[webslave]

And the next thing you know, chronic prostatitis / chronic pelvic pain syndrome symptoms (not immediately, but maybe one or two days after, is this normal?).

Yes, not unusual.

I didn't bang anyone, but lets just say there was some rough, drunken, long lasting lap dances, I think that definitely started the pain

NO infection, for sure. Trauma, maybe. Guilt, maybe. Anxiety about marriage, most probably.

This has been a definite "Wake up call."

That's correct.

But it seems like the more intense penile pain started after the therapy began.

If she is doing internal work, this can start up pain, but if she has long and strong enough fingers, the pain should resolve. Many women do not have the finger strength or length for this job, unfortunately.

What are the effects of cigarette smoking?

Bad, so stop.

What are good pain relievers besides opiates that are strong enough to stop this penile pain, but at the same time not hurt my recovery?

Synthetic opioid called Tramadol (under various brand names). Much less addictive than pure opioids and will not affect mast cells.

[BrettP]

Ok, my flare up is including the issue of pain in the tip of my penis. I have had this before, and had to stop wearing my "Hugh Heffner" style robe as it felt like it was chaffing the tip. It did go away though after some time, and some valium which I was on at about the rate of 15mg/day, I'm now doing 7.5-10, and was reduced all the way down to about 5 before this flare started! I was going great with my PT and other forms of treatment until this started. I was wondering if anyone has any successful ideas on how to make it go away!!!!! :)

Its starting to bother me continuously, and that I can't stand. HOWEVER, I must say, these forums have lightened my mood and increased my outlook by a very large value. It has only been a short time since I have been here, but I do already have a more positive outlook on life.

Also, do people get urinalysis done often, to continually rule out infections, or, at a certain point does it just become assumed that the chronic prostatitis / chronic pelvic pain syndrome is causing the problems?

My pain in the tip is replicating the pain I had in my initial UTI. I'm thinking about getting tested just to make sure its not an infection, I guess it can't hurt right? Also, does anyone know if there are any home tests available for this? Like a dip stick or something?

When I talked to my physical therapist (Bonnie Cardenas) whom I can't say enough good things about, she told me that concentrating on relaxing and realizing how the pelvis works, and doing visualizations would start to help me as she works on the internal TP's.

If anyone has any other suggestions I would appreciate it. Thanks ya'll.

Brett

[webslave]

Also, do people get urinalysis done often, to continually rule out infections, or, at a certain point does it just become assumed that the chronic prostatitis / chronic pelvic pain syndrome is causing the problems?

Urinalysis is a waste of money after you have had an infection excluded by test or by taking many antibiotics. But if you need a urinalysis to give you peace of mind, go right ahead. No home tests AFAIK.

Don't be impatient with this.

[superuse]

Given you're an accountant who sat or sits a lot, with tip penile pain, and that describes almost 25-50% of the people on this site (exactly or to a significant degree), we can probably be about 98% sure you have a pelvic floor problem with antibiotics and 6mo under your belt. There are cumulatively probably 1000's of further unhelpful tests that have been done searching for infection.

Didn't you say you really didn't have any real interaction? How do you figure you contracted a UTI from the party? (Lets not get Bill Clinton here on the definition of sex).

--jjf

[BrettP]

Well it was a bunch of us in a spa, and the spa was really, really dirty after a few hours, but being drunk and not caring, I didn't really notice. However, while I was getting the lap dance in the water, seems like some of it seeped in. I also had an awful case of chaffing on the tip at that time, directly caused by the roughly two hour lap dance. "I did not have sex with that woman." lol REALLY THOUGH, I WOULD ADMIT IT IF I DID!!

[BrettP]

Another question, and this one is gross. This is the other symptom I have been having and its come back more frequently as the days go on.

Anal fissures, maybe hemorrhoids, not sure, but bleeding happens. And this bleeding freaks me out and is an instant pelvis tightener (these symptoms started before the pain in the tip got going this time around, which actually seems to be abating!). Never before did I have these fissures or haemorrhoids, maybe ONE time, but not like it is now. Here's the problem, I think after one of the treatments, I got a fissure, I then started taking Metamucil to help it heal, after about three days, there will stop being blood ( there is also some mucousy discharge surrounding the blood). So I try to take it easy on my bowels while this heals, by taking metamucil for a softener. Then I notice a strange problem, I might not go for a couple days, and when I do, its big when it comes out, and later that night, the fissure/hemorrhoid symptoms will start again. So that is a bit discomforting, but I can deal with it. I was just wondering if this is normal, and what I can do to stop the symptoms, and stop this process as it is leading to my anxiety. Especially since I have been regular for YEARS until this.

Also, do you think I should get any tests done, or just take the Metamucil longer to make sure the problem heals for a longer period of time?

I looked on the boards but didn't really see anything so I figured I would just bring the topic up again since maybe someone else is going through the same thing.

Thanks ya'll.

Brett