New member - My story (hope you like to read!)

[wrcftw]

Hey everyone, my name is Kevin and I am new here and fairly new to CPPS. I'm still not really entirely sure that I have chronic prostatitis / chronic pelvic pain syndrome since I've never been medically diagnosed with it, but alas...it seems as though very few have! The last 3-4 months of my life have been a major emotional rollercoaster and I will never forget them for as long as I live. Here's my story.

I've had mild anxiety issues my whole life, always been known as a bit of a worrier. However, I've always been an extremely happy person, had a wonderful childhood and fun-filled teenage years. I'm a very deep thinker and while I have many close friends and a beautiful girlfriend, I view myself as a very introverted and introspective person. I consider myself to be an observer.
A few years ago, in my first couple years of university, I my anxiety got worse. I found a small cyst on my testicle and was convinced I had cancer and was going to die. I was so worried about this that I was terrified to go to the doctor to get it checked out. I held out for around 3 months out of complete terror over what the doctor was going to tell me. By the end of this 3 month period I was a nervous wreck. It wasn't until intervention by my parents who noticed a serious change in my personally that I finally came clean. Upon hearing from the doctor after a quick ultrasound that my cyst was benign and nothing to worry about, I was both elated and stressed. I had wasted 1/3 of a year totally consumed over absolutely nothing. I was convinced that this was a major turning point in my life and my medical anxiety was behind me. Boy was I wrong. About a year after my testicle issue, I was the recipient of some very painful head/face aches. My sinuses ached and throbbed and I had a headache 80% for around 3 months. I had learned my lesson this time though and gone to the doctor immediately instead of worry about it. This time however, the doctor wasn't much help. After a few courses of antibiotics, some poor advice from a walk-in clinic about colloidal silver, and a head x-ray, my doctor FINALLY suggested that I have an allergy test. Turns out, I am very allergic to dust and mold. After starting on allergy medication daily, I was very happy to report that my headaches were gone and only return if I forget to take allergy pills for a few days.

Things were looking up until around 1 year ago I started having an uncomfortable feeling in the behind. It always felt as though I was sitting on something or hadn't completely passed a stool or something. After a few trips to the GP she noticed a small fissure and told me to take a few hot baths. Things got better after about a month and I was generally symptom free all of the time.

Fast forward to my final year of university. I started having this strange feeling in my perineum, sort of like someone was constantly pushing on it from the moment I woke up until the moment I fell asleep. The symptom lasted for around a week and then disappeared completely. A couple weeks later I got the same feeling again, except this time it was accompanied by a tightness and burning urethra. Not when I physically pee'd, but every moment of the day that I wasn't peeing. It was midterm season and the feeling was getting vey very annoying, especially because I was sitting a desk for at least 6 hours a day studying. I went to my GP, had blood tests and Urine tests done which came back perfectly normal. She assured me that it was probably just some minor irritation that would pass in time. She was right! After about a week and half the symptoms pretty much disappeared completely. It wasn’t until 3 weeks before finals that my journey into chronic prostatitis / chronic pelvic pain syndrome really started. The burning/aching feeling in my penis, sensitivity around the head/tip of my penis, constant feeling of needed to urinate, pain and swollen feeling in my perineum and anus came back with a vengeance and have never really left after 4-5 months so far. My GP continues to claim that it is all stress related and as soon as I get my anxiety under control (I have resumed taking Zoloft, no more anxiety but still CPPS) the symptoms will go away. I saw 2 more GP’s, one though I had proststitis, another thought I had some sort of rectal infection. I was placed on Cirpo for 12 days. During these 12 days my symptoms went from around a 3-4/10 on the pain scale to a 10. I was completely bed ridden. I had constant pain in the areas mentioned before as well as flare ups that felt as though the tip of my penis was being pinched or on fire. It was unbearable and my anxiety was full blown as well as a new symptom; depression. I’m 23 years old, my GP had no clue how to fix me and everything I had read on the internet was very doom and gloom. In these 12 days I had lost 10 pounds and went from a pretty happy but annoyed soon to be university grad, to a student who deferred all of his exams and laid in bed thinking about how he was going to cope with living the rest of his life in pain. It was the worst 12 days of my life and I’ll never forget starring at my ceiling and feeling utterly hopeless and alone. Thankfully my wonderful friends and girlfriend and parents were there giving me support or I don’t know what dark place I would have found myself. After the last 2 days of the 12 day period I had had enough of the pain and felt that it was only getting worse. A trip to emergency later and I had a referral to a Urologist and a telephone instruction to take 6 weeks worth of Cipro until my appointment.

These 6 weeks were very difficult. I managed to pull myself out of the deep depression and I found that my symptoms were starting to feel a little bit better. I was at around a 3-4/10 on the pain scale again and no flare ups. After the 6 weeks was up and I had the worlds shortest meeting with the urologist (who told me I was perfectly healthy) I have been were I am at ever since. Constantly uncomfortable and VERY worried about my future. I found a way to dig deep and finish my finals and have received my degree. However, I don’t know what good it is going to be. Every time I find myself the least bit stressed out I can feel the pain escalate. My chosen career path was to become a Chartered Accountant (CPA for you Americano’s). I had gone through university and graduated with honors through hard work and obsessive studying habits, however the next 2 years of articling and going through the CA school of business are supposed to incredible stressful. I have no idea how I am going to do it and if it’s even possible.

At the present day, my mood is a little bit brighter, but not much. I’m currently unemployed but have signed a contract with PricewaterhouseCoopers to start articling in the fall. This should have been the happiest time in my life. I was supposed to be working a summer job and moving out with my girlfriend of 2 years. Instead I find myself constantly uncomfortable, sometimes in pain, usually quite irritable and moderately depressed over my whole situation. I feel like chronic prostatitis / chronic pelvic pain syndrome has robbed me of this important time in my life. I feel as though a successful career in this high stress field of work is nearly impossible for me and I should just focus on another path, so much for 5 years of University. How do you guys do it? I have a hard time keeping my spirits up while being unemployed and hanging out all day, how on earth am I going to work and build a career.

I’m totally lost and feel completely alone. My whole life I have been an excellent student, a great friend and a great kid, and now I feel like the time in my life when I was to reap the rewards of my hard work have been taken away from me. My parents don’t understand my condition and since no doctor has diagnosed me with anything they are reluctant to think I have a chronic condition, my girlfriend is the most positive person on the planet and just wants me to be happy again but I’m not sure how to be. I need help. I’ve sought out Cognitive Therapy and will give that a try. I just feel like years of pain is not something I signed up for and I’m not sure how I can cope with this illness. I feel cheated out of a life and cheated out of a professional career. My goals in life use to be to become a CFO or a partner at a firm, fulfill my passion for cars and buy myself a used Aston Martin when I’m 50, own a cottage at a lake where I can fulfill my passion for astronomy and build a backyard observatory and have a few kids and dogs. Now it seems like just being healthy and happy might be asking for too much, let alone financial stability.

For the first time in my life I feel completely out of control of my destiny and on a destructive path. I don’t want to let my life slip away because of chronic pain, but I feel as though this is some huge mistake. I wasn’t built to take this pain; I’m not a mentally strong person to begin with. Life for me was hard enough without CPPS.

Help!

Kevin M.

[carld]

Hi Kevin,

Welcome...Classic case/personality here. You fit the perfect type of man who comes down with UCPPS...Please read my starter list to get you going. You will recover...The same type of personality that gets you in this mess can ironically get you out!

Try not to worry anymore...Your healthy, smart and young. You just have this genetic make up like myself and many men here that effects the pelvic region of your body.

Please note that you have allergies so there could be a food connection as well...and that food connection could be causing your anxiety as well which feeds the UCPPS....

Get this book...
https://www.amazon.com/dp/0892818751

Best, Carl

[atma]

Finding who we really are can truly only be measured when faced with difficult times. We have all been in your mindset before. Thinking someone or something took life away from us. Or that we are being unjustly punished. The truth is we must take responsibility and not try and pass blame or find someone to blame. There are a number of reasons for this condition developing, however, there is only one person who can resolve the problem of CPPS, and that is you. We all stumble upon the forum after months, years of searching for an answer.

As a pessimist and a true believer in Western medicine, I was sure my doctors would find the reason. They never did. We have to find our own cure using the facts that we find along our journey. There is a wealth of knowledge on this board. It will take some time, but filter through it, and take what you need. Some of the data may not apply to your case. The medical industry is slowly (very) working to investigate this condition, but currently it is a condition that is diagnosed through a process of elimination and only by a few educated doctors.

You have to play the cards that life has dealt you, folding op re-dealing are not options. We all have hit the rock bottom point, but we have also pulled ourselves up as you will. It will just take time and hard work which you are not opposed to.

You may have lost small pieces, but don't let it take anymore. You have a lifetime ahead of you. Don't dwell on what you think you have lost, concentrate on what your future holds and what opportunities will be waiting.

Read up and relax.....I know easier said than done :)

Take care,
ATMA

[snoopy]

Kevin,

I'm right where you are now. I finished grad school, got a great job, girlfriend, life was grand and then the pain kicked in. Your personality sounds exactly like mine and most on this forum. I've had and am currently having all the thoughts and pain you have. Feeling robbed and cheated-unable to go on, but somehow I and many here manage to keep on truckin. What other options do we have but to go on? I can sympathize with you 100%, and I wasn't nor do I think anyone was built to endure this pain, but we must go on. I am lucky like you to have a great woman, and i seem to push forward for her, for the possibility that the pain can be managed or cured. I focus on doing everything I always wanted to do and just keep pushing toward that. But what you have to realize is that your anxiety and my anxiety is what got us into this. Cognitive therapy, relaxation, stretching, yoga, massage, and a somewhat radical change in ourselves is what has to happen for change in our condition. Maybe your right about a change in career path, but I'm with you on not wanting to throw a whole career away b/c of this. I'm sure it pisses you and everybody here off b/c we like the way we are and we don't want to change. People with a type A personality have accomplished some of the most incredible things in this world, although not all of them have CPPS. Actually, Dr. wise told me JFK had CPPS.

I see this an an incredibly horrifying yet enlightening spiritual journey. We are all out of balance and the pain is a signal from our bodies that we are out of balance. You should watch the David Wise video on this forum (if you haven't already), it all makes much sense to me....it is just hard to change a lifetime of habits, especially with the continual stress of life, love, work, etc. You'll find many posts just like yours' here so maybe that will comfort you some. Just try to cope and keep moving forward. Practice the protocol and hopefully you will get some results.

Best of luck to you

[carld]

Good post snoopy!

[wrcftw]

Thanks for the replies and words of encouragement. I found this site a few months ago but was hesitant to pay the $20 so I just read the success stories. At first it terrified me that this condition can last so long. But that being said, I'm pretty sure my life was headed for disaster anyway....I cared too much about money and material objects and I stressed out about career success. I dont want to change careers, but at the same time...no one becomes an accountant because they are passionate about it, and it can be a really stressful job requiring intense hours. I just don't get it. I've finally brought myself back to normal (sort of) and can enjoy the things I used to enjoy, but I have no idea how I am going to do the things I don't enjoy (work, study etc etc...). How do people live with pain?

How did you guys deal with parents and loved ones who don't understand your condition and think you are just catastrophic thinking when you tell them you might have a chronic condition? I've always been very skeptical and very scientific and I really hate how no doctor will give me ANY answer as to whats going on with my body. I don't want to fall prey to quack theories and pseudoscience, I hope all of you steer me in the right direction.

I just want to get married, move out and buy a cat and a dog. I truly feel that if I won the lottery or whatever I would be quite content with the pain as it seems to be work and financial stress that really get me ticking.

I try to be stoic about all of this, and usually I am. Sometimes I can't let go of the anger though. I would never ever consider taking my own life so I must live the life that was put before me and do my best to make it a positive experience.

Thanks guys, look forward to chatting with you.


Kevin

[snoopy]

Kevin,

The only quack pseudo-science thing you could do is get a surgery or invasive procedure or some kind of treatment that would hurt you permanently. The benefit of this forum and Dr. Wise's theories is that they can't hurt you. You're right no doc in the world can unequivocally tell you why this is happening to you. That is why so many of us are here. You should call Dr. Wise and see if he'll let you talk with one of his success stories. It can really lift you up. I am a hydrologist/programmer and have had plenty of science, math, physics, and biology so I know how it feels to be skeptical, it is part of my makeup. It is that skepticism and being stuck on the tangible that has gotten me into this in the first place. I become detached from the less tangible things in life, spirituality, happiness, love, gratitude, etc. I have that lottery thought all the time, but what are the odds that you'll win the lottery, gotta push on. I know it feels like this is the worst of the worst. For me, even as an anxious person prior to chronic prostatitis / chronic pelvic pain syndrome I was happier than I am now, but never truly happy. It always felt like something was missing and I could never get there or fill the void. I guess I'm saying I would probably find something else to freak out over, and it is time that I learn to change. I mean what if we just die and don't go anywhere when we die. Wouldn't it be better to live in pain that not live at all.

how I am going to do the things I don't enjoy (work, study etc etc...)?

This is the pivotal question for you and me and the crux of my problem. How can I be content when I'm doing things I don't want to do? People who can do this don't get pelvic pain. This is why we are all knotted up inside. I don't have the answer yet, but I'm still looking.

You should get a PT evaluation. If somebody puts their finger in your bum and presses on your pelvic floor muscles and it hurts, and your pain is recreated by this therapy, you can be assured that your problem is there. It shouldn't hurt, just as it doesn't hurt when you press on your biceps or some other muscle that isn't in spasm all the time. At least that's what Tim Sawyer (the best pelvic floor PT in the world) always told me. That would be the test for you I'd say.

Luckily, my parents were understanding about it and believed me that something was going on, but they also know me and know that I have a tendency towards catastrophism. Maybe your parents aren't that wrong about you thinking catastrophically. We all catastrophize, but some of us take it to another level. It is like digging a hole. The deeper you dig yourself in, the harder it is to get out. The more you believe your life is over the more it will be over. If you believe you will persevere, you will persevere. I think you should move on as if this never happened, but learn how to manage and change your habits, you have to find a way. It is easy for me to tell you that, but a lot harder for you or I to actually do it. If you've got a girl that loves you, enjoy her. You live with pain like you live with everything else, one day at a time.

If you read my posts I am struggling in the exact same way as you. My girl is in Europe, and when she gets back I am going to propose to her. Any woman who still wants me while knowing all of my problems is a woman I want to keep. If yours is a keeper Keep her.

Snoop

[coppertop]

Great post and great advice!

[wrcftw]

Crazy snoopy, you and I seem to be terrifyingly similar. What you said about doing the hard things (work, studying) is so dead on its scary. Even before chronic prostatitis / chronic pelvic pain syndrome I have always felt that void. Felt as though I was meant for something bigger and better and just had to figure out how to do it. For the last 5 years of my life I've felt somewhat like a lone wolf even though I literally have 10+ guys that would take a bullet for me and have had 2 great long relationships with beautiful girls. I always thought that maybe this was just a quirky personality trait but it got worse and worse until I started questioning and second question everything I did with my life. Should I drop everything and go traveling for 2 years? Should I get my CA and work for a Big 4 accounting firm and make lots of money, should I start my own business? Should I be pursuing the scientific or philosophy grad school career I fantasize about sometimes? I felt like a thinker and not a do'er and I hated it, but as soon as I did one thing (Big 4 accounting firm) that wasn't good enough and I wasn't satisfied. This condition has been both a blessing and a curse, and I've read that on here a few times. I just hope I find a way to truly be happy in life, and find a career that fullfills my passions and goals and finally makes me feel complete.

I also think I have classic little brother syndrome. My big brother is a high flying marketing wiz in Montreal and writes on fashion and design blogs....something that I think would be really really fun to do but never did because I was too consumed with making 100k a year and he makes nothing. I know I come off as a really money driven person, I never did use to be and its really not the money thing I like, I think its some innate desire to be respected by my parents and by society. I need to learn that there are other ways to do that. I've always been a very kind and gentle person, a part of me that I think is my best quality.

Thankfully I have a girl that is head over heels for me. I can't lie though, I've been having a lot of thoughts lately that even though I love her I should let her go and find a man that won't be a basket case like me haha. I could never do that though, she's too cute and we get along way to well. I do hope I find a way to make some money though, if the accounting thing crashes and burns, which I think is almost inevitable unless I drastically change my personality.

Snoppy, have you ever thought of changing careers? Does a low stress but decent paying career exist!?

[wrcftw]

Kevin,



You should get a PT evaluation. If somebody puts their finger in your bum and presses on your pelvic floor muscles and it hurts, and your pain is recreated by this therapy, you can be assured that your problem is there. It shouldn't hurt, just as it doesn't hurt when you press on your biceps or some other muscle that isn't in spasm all the time. At least that's what Tim Sawyer (the best pelvic floor PT in the world) always told me. That would be the test for you I'd say.



Snoop

I wonder if there is anyone doing that sort of PT evaluation in Edmonton, Canada. When I had a prostate exam it didn't feel good and the penile symptoms were recreated. I'm not sure if thats normal during a prostate exam though, never had one before. It was just my luck that the doctor at the clinic was about 6'5 and had meat hooks for hands, what an embarrassing condition to come down with haha. There have been a few times over the last while that I've had to just laugh at the situation.

[snoopy]

Kevin,

I've definitely thought about changing careers, but in this economy I'm not sure that's the right move for me. I just got a 10k raise, and my job is surprisingly secure in spite of the economic climate. Somehow through all this nightmare I've managed produce and function at work at a very high level. I've thought of dropping it all and going to lay on my parents couch for stint, but that isn't the answer either. I don't think you need to drastically change your personality, maybe just identify your problem areas and develop some strategies to cope and manage the situation. I just got back from a business trip and i was in terrible shape most of the time, but I managed to get the job done with quality and efficiency. When I go out of town this all gets tremendously worse....being on a plane, being on my boss' schedule, eating too much, drinking too much, etc, but I can't really say I'm that much better when I got back home and chilled for a bit. Maybe my girl being out of town is not helping either.

As far as finding a PT in Edmonton, can't say i can help you there. I'm someone is doing pelvic floor PT. Sometimes you have to look for places that help women deal with pelvic pain and they'll do PT for men as well. People on the forum are all over the place so you might just post a new thread titled "Looking for Edmonton, Canada Pelvic PT". Seems like like I've seen others in Canada looking for this.....?

I'm not positive, but I think it is natural to get a stinging feeling in your urethra if someone presses on your prostate, but since the prostate is attached to the pelvic floor muscles in can reproduce some of your pain. You really need someone experienced with pelvic floor musculature to locate your problem and determine its nature. You're still young so I know this is bad timing. I think us younger guys have a harder time with this b/c we are still in our prime. If I had been married and had kids and made it to 40 or 50 before this happened it wouldn't have been as difficult for me. Now I'm like you, imagining making it through the rest of my life with pain. Hang in there...

Snoop

[snoopy]

Kevin,

How are you feeling lately? Any luck with a PT?

Snoop

[wrcftw]

Kevin,

How are you feeling lately? Any luck with a PT?

Snoop

Not too bad actually...I'm finding that when I am at home watching movies or playing video games or out with friends/girlfriend I don't notice too much pain anymore. Yet, when I'm out job hunting or during an interview the pain kicks in and is hard to shake.....now, only to find a way to make money while doing nothing all day! .....i AM going to Vegas next week


I haven't yet looked for a PT. To be honest, I am a little hesitant about the whole procedure. I know people here swear by it, but it also seems to take years.....it is possible that what's happening is merely a therapeutic benefit and the condition "heals" over time once you stop being so anxious and tense?

[carld]

I haven't yet looked for a PT. To be honest, I am a little hesitant about the whole procedure. I know people here swear by it, but it also seems to take years.....it is possible that what's happening is merely a therapeutic benefit and the condition "heals" over time once you stop being so anxious and tense?

Meleski,

Yes and no...The #1 thing to deal with is to treat the cause, in your case it's likely...Stress...So your right, this helps calm the nerves that are irritated from pelvic myoneuropathy...

But...the muscles that have been chronically tightened don't by themselves go back to a normal state for the most part. Those muscles need to be treated through a qualified PT who deals with pelvic floor dysfunction. Just my opinion...

[snoopy]

I have to agree with carl, but it is good news that your pain is low when not working. Take the positive when you can. I've progressed to the point where it is there no matter what I'm doing, but still worse under stress(at work, etc.), so be glad you have some reprieve. Let me know if you need anything....

Best of luck, Snoop