Rusty's case. My story. Could it be CPPS?

[Rusty]

Well hello everyone I guess I shall try to be brief and not too long and give the important details.

I am a 23 year old male, healthy, have always been. I go to College, and I used to work but not anymore after this. I don't smoke (I do drink but very little) and I'm generally a very quiet I guess nerdy kinda guy who loves to read and learn. I used to run and bike (only when it's good weather outside) because I ain't paying for a gym and I hate the cold.

My story starts February 28th, I was 22. I usually sleep sprawled out on the bed but that day I knew something was wrong when I woke up on my left side curled up in a ball. Just not my usual way of waking up.

As I started to roll over/stretch I felt what seemed to be a VERY STRONG sharp stabbing pain on my left side of my lower abdomen/pelvis. Like someone was slowly sticking a knife into me. Very scary and very shocking. I lay there for about 10 minutes before I even get the nerve to move. I called my mother and friend to tell them what had just happened but both chalked it up to "sleeping wrong" or something.

This was on a Friday so I thought why mess with it and go off tonight and have a good time so I did. Saturday felt a bit worse. And Sunday was when the pain was starting to get very bad. I felt like I had a huge bulge in my left side and I was limping in pain. On my way to the doctor on Monday, I began to feel pain in my penis, a lot of pain. I turned around and went to the hospital and I had pain in my left side and in my penis. My penis felt hard as a rock yet I was small. The doctors thought it was maybe a kidney stone so a CT scan was ordered, nothing.

I went to the doctor the next day and he did many physical tests and an ultrasound of my left side and found nothing. I told him that when I was peeing at the hospital, my stream was going slow, then getting really strong. He checked my prostate (first prostate exam ever ouch) and he said I was fine.

Well that same night I'm in so much pain all over my pelvis, especially my left side and I'm taken SCREAMING to the hospital. The pain was so bad unlike anything I had ever felt in my life. I immediately lost control. I was fighting off nurses and doctors and my own mother and had to be held down and sedated. My penis hurt so much and it felt like a I needed to pee really bad but I couldn't. It felt like my penis was just really hard. I had a catheter JAMMED down into me (Nurse: Well, yeah there definitely was obstruction) by that asshole then left for a few hours without anything for pain.

Enough of the hospital stories. Let's just say I had a myriad of tests and had a urologist see me. Nothing was found. I DID have the ER doctor who checked me do a prostate exam on me and he said my prostate was enlarged (wtf?). The doctor I had went to that morning showed up and said it was impossible for me to have an enlarged prostate because he had just checked me that day. I'm thrown out of the hospital with no diagnosis and some antibiotics and panic medication.

Well 2 General Physicians, 2 Urologists, and 1 Gastroenterologist later, nothing is found. One of the urologists did perform an ultrasound of my prostate and found that my prostate was alright, just that there was a lot of inflammation in all the nerves and arteries leading into my penis. They were also enlarged and irritated and seemed to be throbbing. He had no clue what the f and told me he didn't think it was fixable and all he could give me anti-inflammatorys then tossed me out.

I finally relented and went to a phone book, found a pain specialist, and went with him after my doctor wanted to send me to a psychiatrist. Now I know I sound pretty nerdy but I'm really not "that guy" with any kinda issues. I really have a great life and before this happened I don't even remember the last time I cried. Now it's kinda daily with this pain : ( but here I was enjoying life with school and tons of girls I was talking to and a great (shitty) job at the mall where you meet tons of hot girls and getting money from it and this comes along and ruins it all. Um, no I don't need a shrink thank you very much I need PAIN MEDICATION ARGHSDJKFH.

This pain doctor does tests and tells me he think it's the iliopsoas muscle. He says he can feel it kinda tight/hard when he presses on it and I SCREAM and flail when he presses it. He moves an inch and presses and I'm completely fine. He's tried all kinds of therapy Myofascial release which kinda hurt at first but felt good later. A bunch of exercise and stretching therapy including some kinda shocking therapy and nothings works.

During the first therapy session, my pain seemed to be going from my left side to my back. He said the muscle connected to a certain point on my back L2 and L3 I think and he pressed and asked if I had any pain. I said no and he was like "are you suuuure" and pressed even harder and yeah I yelped out in pain and said yeah didn't know. He did some manipulation where he almost broke me in half he's a strong guy and then when he pressed on my pelvis, the pain was gone! It wasn't gone, but like, when he pressed it didn't hurt a lot like before. The pain was still there.

I had an MRI done on my back and turns out I had a lumbar spine sprain, not a herniated disc (like I thought I did, tell you later why). Turns out this muscle is pulling on my spine! That's kinda scary! Well I'm getting a lot of pain on my inner thigh, sometimes down my leg into my big toe, lower back, left pelvis, and perineum! It kinda hurts around my anus and down to the beginning of my penis. Like it's being choked at the beginning or something. It gets hard yet it stays normal size. I can have ejaculate fine (now) but afterwards it just get really tight and hurting.

I got a trigger point injection and that worked fine for about 3 weeks but the pain came roaring back.

Now, my pain management doctor tells me that I need to start thinking about accepting this and just managing the pain rather than trying to find a cure. I told him about the benzos (which were starting to get prescribed to me steadily by my regular doctor for insomnia and panic attacks). He said he did know of people who were helped by anxiolytics so he said he found our "pain management" so far which is just drugs, a combination of Ultram ER (200mg) and Ativan (2-3mg) a day.

Usually bad bowel anything hurts me also. I can pee fine. My left side has been starting to hurt more now. The pain seems to be spreading UP into my ribs. Like when I dig into my ribs with my fingers, the muscle underneath the skin hurts. On both sides.

Life has been hell. I had to drop out of school when I only had 2 classes left to finish. I'm taking those 2 classes again but I'm scared of not being able to pass them again in case something happens again. It's one thing getting used to fear and worry. Both very strange emotions to me. And pain.

I've been reading this website for a while now just lurking but I figure now is the time to go out and write my story. Does it sound like some kinda Chronic Pelvic Pain? Could it just be a fucked up muscle? Is it maybe a tiny cancer tumor growing that's too small to be seen? Do I really need a shrink? Maybe the beginnings of fibromyalgia? I don't know.

P. S. - Oh fuck. Really bad news. Towards the end of writing this, I got a call from my doctor. You see I was on emergency medicaid being a broke college kid and all I live with my sister apart from my mother with no job. I applied again but as of now I'm uninsured. I don't have any money to fill in the Ultram prescription the pain doctor gave me a month ago, and although it was tough gathering the money to buy the Ativan, 23 bucks was fine. The Ativan was prescribed to me by my regular doctor who just called me and told me he doesn't want to see me anymore until I see a psychiatrist (:sigh:) and won't refill my prescription until then. I just ran out TODAY and I'm fucking shaking in my boots about how I'll go about tomorrow. The pain flare-ups get REALLY bad, as in me crying like a lil' bitch and sobbing hysterically because that's how badly it hurts. I don't know what to do anymore. I've read entire websites and read so much on this and yet can't figure out how to fix this or help myself I'm so completely lost. Can anyone at least point me in the right direction? :sad: :sad:

[webslave]

Whoa! Calm down, you'll survive and no, you do not have a little cancer (cancer is usually symptomless, especially when the tumor is small). It's clear you are highly strung (panic attacks) and prone to anxiety, even though you see yourself as laid back and cool. That's common in men with CPPS, BTW — they are often very tense people who regard themselves as completely normal and rather imperturbable.

Sounds like you have some nasty trigger points and haven't really had them properly treated (note how the pain subsided with the injections, which partially treated them, but came back when the treatment stopped).

In your shoes, I'd do the following:

• Get to a good PT, see if you have one locally (but if you can afford it, the Wise clinic is the best option)
• Take one of the Quercetin suppliers products (helps a lot of guys by lessening the inflammation at the end of the nerves)

There are lots of other things you can do too, and the forum is full of suggestions and tips, but if you want to take a straight line to getting better, start with that. BTW, seeing Wise is better than seeing a psychiatrist, because he's a psychologist who happens to be the most skilled mental health practitioner in this field in the world.

[Rusty]

Yeah, the doctor just said it "might" be a little tiny cancer but that's just him throwing out ideas.

I really never have been high strung or had anxiety before and maybe that's just me being in denial and trying to sound cool I don't know. But ever since all this stuff started, I've been VERY high strung and very panicy. I'm trying to get a refill for my prescription VERY soon and I'm going crazy. This never happened before to me but oh well, I guess it comes with the territory.

Yeah the doctor mentioned that I had some trigger points that I'm coming down on but he doesn't know how to fix them. So far he's just prescribed the benzos and opiates as a way of "managing" the pain but no real fix. I'm getting kinda tired of this. Also I have no money and I had temporary insurance so I wanted a fix.

To tell you the truth, I got a any accredited quercetin product from this place! From your link actually. It didn't work so well actually.

I'm more than sure the perineum/penis pain is from my spine because I've found other websites where people are complaining about the same thing and they have REALLY bad backs and they get their back fixed and it goes away so I'm certain it's the muscle pulling on the spine causing that.

Ok well I'm waiting for my insurance to come in I don't know when it will and when I do I need to find a new doctor and get my ultra script filled right away. Maybe I can get my pain doctor(doctor who hasn't left me) to prescribe me the benzos. Although I heard you shouldn't be on them for too long. I've been on them for maybe 5 months already. I take 2mg in the morning and I feel untightening all over my left pelvis and leg and just great. I can usually last the whole day like that but at night it's a bitch to sleep because it's wearing out. I want off them!

I've been thinking of doing the broccoli treatment. Has this worked well for any of you guys in sorta the same situation as me? I mean you say it's trigger points, so I don't know if it's the same as prostate stuff or is it all the same?

You say I should find a good PT. Any tips on finding one? Like what should I look for what they say on their ad or what questions should I ask. The trigger point injections were great! I got them and towards the end of the week I was doing all sorts of crazy lifts and exercises. My PT was like "wow you're pretty strong/healthy", now that I wasn't limping around in pain anymore. To be honest she didn't seem like a good PT, well just because she mostly "followed the doctors orders" and never really could figure out anything about me.

That's why I'm asking about the PT. I guess trigger point therapy is my thing now.

Oh yeah, can you believe that before this, I had never taken pills before? I didn't even know how to swallow them with water I constantly choked on them. Yeah I learned pretty fucking fast this time haha. Now that's all I do is take pills pills pills all day. Hopefully this can change soon.

[webslave]

Yeah, the doctor just said it "might" be a little tiny cancer but that's just him throwing out ideas.

Any doctor who would mention cancer in this context is irresponsible and should be avoided in future.

I really never have been high strung or had anxiety before and maybe that's just me being in denial and trying to sound cool I don't know. But ever since all this stuff started, I've been VERY high strung and very panicy. I'm trying to get a refill for my prescription VERY soon and I'm going crazy. This never happened before to me but oh well, I guess it comes with the territory.

Nobody suddenly becomes anxious, highly strung and panicky. That is your underlying disposition.

Also I have no money and I had temporary insurance so I wanted a fix.

If you have insufficient money for Stanford, then check our listings of therapists in the clinics subforum.

To tell you the truth, I got a any accredited quercetin product from this place! From your link actually. It didn't work so well actually.

It does not help about 30% of men.

I'm more than sure the perineum/penis pain is from my spine because I've found other websites where people are complaining about the same thing and they have REALLY bad backs and they get their back fixed and it goes away so I'm certain it's the muscle pulling on the spine causing that.

Disagree.

I've been thinking of doing the broccoli treatment. Has this worked well for any of you guys in sorta the same situation as me? I mean you say it's trigger points, so I don't know if it's the same as prostate stuff or is it all the same?

If any accredited quercetin product did not help you, this probably won't either.

[Jay]

Hi there,

Welcome to the boards. I just wanted to offer a few quick points of my own, as I'm a little short for time.

1. I am also on pain management, have been for some time. Don't worry yourself so much over this. If you need to do it, then so be it. Nothing to be ashamed of. If your pain management physician is responsible, the medications will not be harmful, and you can be weaned off when the time comes. I've been on daily benzodiazipines (as well as three other drugs) for about a year now, and I'm not dying over it.

2. Your doctor does have it right, in my opinion, when he says that it's time to address the symptoms and let go of the 'cure' idea. Acceptance is a good thing. There is no known cure for Chronic Pelvic Pain Syndrome, but there are approaches to controlling it. Properly managed, you can be practically asymptomatic, but it won't happen overnight. It takes a long time, personal devotion, and the assistance of PTs and physicians with an interest in the problem.

3. Listen to Webslave. He is smart. You very likely have issues with your pelvic floor, especially if palpating one of the associated muscles caused you such agony. Pain in all of the areas you've described can (and does) get related from the pelvic floor muscles. If nothing else, I can assure you of that, as I have pelvic floor dysfunction and am symptomatic in many of the same regions as you.

4. Don't be upset if someone suggests that you may need help with anxiety and/or depression. These are common elements in men with CPPS, whether they realize it or not. Furthermore, people with chronic pain in general are very susceptible. It doesn't mean that you're crazy.

5. Cancer is really, really unlikely, for reasons stated by Webslave. This is especially true at your age.

6. Take a deep breath into your stomach, exhale through your nose, and grant yourself some relaxation time. Fixation can make this ten times worse. As a word of advice, stop reading medical websites, too.

7. I've had very high quality MRIs of the pelvis and spine. The only thing that showed for me was disc degeneration, which proved unrelated to my problem.

8. This can be tackled. Don't see yourself as being doomed. To quote Winston Churchill: "Never give in. Never give in. Never, never, never, never -- in nothing, great or small, large or petty -- never give in, except to convictions of honour and good sense. Never yield to force. Never yield to the apparently overwhelming might of the enemy."

Different context at the time, but I've always liked it.

[Rusty]

Thanks guys for the info!

And Webslave, that sounds about right.

Jay, it's just that I've read so much on here about guys going on without benzos or ultram and I get into SO MUCH PAIN without them. Like literally bed-inducing bawling my eyes out full on pain along with the whimpering and loud sobbing. It's just so bad and I read about people on here having "benzo weekend" every other weekend and I have to be on them daily and it's just so frustrating.

Honestly, before this I was such an outgoing, "work hard, play hard" kinda guy. I never got sick and didn't even know how to swallow pills! I partied all night and went to the work in the morning. I woke up early, I slept late. I got shit done, son. And now, I can barely get through my 2 classes at college and come home to simply lie down for a large part of the day and that's all I wanna do. I tried playing guitar today and the strings smell terrible from the rust which shows how long since I've picked it up. This was a VERY fast transition for me and a totally different lifestyle than what I had.

So my regular Physician dumped me, I don't know what reason, and since I'm uninsured I'm seeing a doctor from Mexico since that's all I can afford. This one actually didn't need any convincing that the benzos were for pain, he told me in Mexico it's very common to prescribe valium for muscle related pain. He told me that I really need to "get me" fixed and he think it's a hernia :sigh: or something.

I'm just waiting for my insurance to come in again so I can go back to my Pain Management doctor and ask him to prescribe me the benzos. He was fine with me taking them when I told him they helped with the pain and told me he did know of people that anxiolytics help by their off-label use so I'm hoping he can prescribe them but he's wayyyy to expensive to pay out of my pocket for a consultation. Till then, my Ultram refill script sits on my desk unfilled and I'm a wreck.

Oh yeah! Another question. A relative (like 2nd or 3rd something relative) is a "massage therapist". I know that's not the same as a Physical Therapist, but is there anything he can do to help? Pretty much word is getting around that I'm in constant pain and just laying in bed all the time and family members are wanting to help. I think I remember reading something like trigger point something on the little pamphlet last time I was there. It might have been on your feet though now that I think about it haha.

[Jon]

Rusty,


Your not alone. Trust me. This problem is more common than you think. If you think you have it bad, read my case or just about any other guys case story here and we've all been there man.

I truly believe every person here can get their quality of life back, if they haven't got it back already. I also believe time does heal but as Jay mentioned, it's also going to take some effort on your part.

Best,

-Jon

[Rusty]

Sorry for bumping this thread but I have a question. I was going to send a PM to webslave but it said I wasn't authorized to send them so I guess I'll just post it here rather than make a new thread so I can get some answers from some people.

I have an uncle who is a Licensed Massage Therapist. My pain is mostly on the left side of my pelvis right near my pelvic bone. When I dig my fingers in, I can feel like a rope or like a huge bulge. Now lately I've been starting to get some pain in my right side but a bit farther up. I think it's the same thing only the pain isn't as harsh.

When my pain specialist gave me the physical exam he said it was my iliopsoas muscle. I read up on this muscle and it said people who exercise a lot and sit a lot are very prone to getting this muscle all fucked up and causing them tremendous pain.

When I wrote my story on here, webslave said it sounded like I have some pretty nasty trigger points since when I got the trigger point injections my pain went completely away. I read up on trigger points and read they only happen on skeletal muscle. Some muscle relaxants are not skeletal, some are. Benzos are, which is why they helped me with my pain.

So if all my trouble is coming from these trigger points, wouldn't trigger point therapy get rid of it? I mean assuming trigger point therapy unknots the trigger points I've read here it feels so much better. Like the pain goes away after the trigger point releases and the muscle goes back to being normal? I think I remember reading that the trigger point comes back from all the muscle tensing, anxiety, whatever the plagues people with this condition and you have to also do some mental work?

My uncle(who I really have only met a couple times in my life) has like a million certificates in all sorts of therapy(massage therapy related) including trigger point therapy. I told him all this and he believes that he can get massage and grind the trigger points out of me(that it will be painful) but that they'll go away forever. Now I honestly still believe I don't have anxiety or any problem with being tense or stressful but webslave made a good point his first response to me and I always play it safe. A friend of the family is a really Psychiatrist with a lot of experience. I had to talk to some guy first before they gave me the appointment and I don't know what he was but he said he thought I didn't need any Psychiatric help but that my case was a simple clear-cut case of my family doctor needing proof I wasn't a hypochondriac or had some mental problem and that the meds were really for pain.

Ugh I'm ranting right now but I guess my question is. Can I get the trigger point therapy, and see this Psychiatrist and tell him everything and it'll kind of be like getting really good treatment? Or the proper treatment. Like from what I've read here it seems like that's what you get at the special pelvic pain clinic everyone here raves about. Sort of like a cheap copy of it since I can't go there and I don't have insurance anymore. I mean if I get the trigger point therapy to make them go away along with the pain, and the psychiatrist to help me be a more calm person(more than I think I am lmao) and it can help immensely as in this is the right way to go?

[carld]

Rusty...

Read my starter list...

[webslave]

Rusty, your uncle + your local shrink is not the same as a PT qualified in treating UCPPS (internal trigger points) and an expert UCPPS-oriented psychologist like Wise.

Wish I could be more reassuring on this, but I don't want to give you false hopes.

[Rusty]

Yeah I know that much haha. I was just wondering if it could help at least a little bit in a cheap knockoff kinda way. At least so I can lower my med dosage a bit.

I actually went to my first Trigger Point Therapy session yesterday and he told me I was a "box full of treasures" with tons of very stubborn trigger points. Hurt so bad but at the end I felt like jello and relaxed and better. He said they're gonna return and told me to do light stretching, like half assed no pain stretching and told me he's gonna need to work on me again in 2 days.

I woke up the next day a bit more in pain! It's a good thing I have my tramadol just refilled. I'm not getting my hopes but just grateful for anything that comes my way.

Oh yeah, I went to my local shrink for an eval and he says he can find no reason for me to have been sent there(aside from the fact that I have chronic pain and he see's a lot of patients for chronic pain). He asked if I needed any help with coping with the pain and if I was feeling any depression or anxiety. I told him everything and he said acute anxiety is normal with acute pain but he doesn't think I ever had anxiety or will if and when the pain is gone. I told him aside from feeling completely down sometimes, I mostly just feel incredibly angry and have been having a really short fuse. He said he wants to keep seeing me if anything develops since I'm a chronic pain patient and we're in high chances of developing depression or anxiety or other stuff or maybe if he missed something and I agreed so I'm gonna see him again in 2 weeks.

He said if I was taking the benzos for pain that was fine because the skeletal muscle relaxant does help some people with chronic pain. But he was more concerned with how I was sleeping. The tramadol keeps me up all night so I'm guessing that's also why he is letting my doctor prescribe it to me.

Oh well, here's to any kinda treatment I can get!

[webslave]

he told me I was a "box full of treasures" with tons of very stubborn trigger points.

nice.

I woke up the next day a bit more in pain!

That's a normal reaction when trigger points are first manipulated.

Oh yeah, I went to my local shrink for an eval and he says he can find no reason for me to have been sent there

Shrinks and psychologists are completely different beasts. You are not insane. You need retraining in some ways of thinking, is all.

[Rusty]

Ok so after going to more therapy sessions, the therapist pretty much told me that he thinks he can get rid of my pain completely.

He says he had it wrong at first. He thought my front muscles(in my lower body) were too strong and tightening up and pulling my lower body back muscles which is why my iliopsoas was tightened and felt like I had a huge lump.

He told me basically it's the other way around. My hamstrings, glutes, side muscles in my legs and other stuff are really strong, and SUPER tight. This is causing my pelvis to tilt upward and my left leg to be pulled outward, which is why I was limping a lot. He said the iliopsoas isn't the "problem" per se. It's the problem causing me pain, but it's not what's causing everything. It's all the other muscles.

He did more trigger point therapy and I have a VERY stubborn trigger point in the back of my leg going up towards my cheeks(glutes or whatever). He taught me some like 5 different stretches after the trigger point therapy and pain went drastically down! He says he can get rid of my pain totally very quickly but I don't really buy it because every day the pain comes back the same level in the morning so maybe you're right when you say I need a more specific trained and learned on this area therapist. So this kinda leads me to believe I have some internal hard to reach trigger point that he doesn't know how to reach or doesn't know can happen.

But still, it's really helping a lot!

Also I think the shrink might've lied to me. Not really lied but I went in with an attitude like I DONT HAVE ANXIETY WHATSOEVER and he basically told my family doctor to keep prescribing me the benzos. My family doctor told me pretty much that if the shrink said to keep taking them, it's not for "pain" reasons since that's not his area of expertise... so yeah. Haha why didn't I think of that before. I skipped a dose to see what would happen and yep, panic attacks up the wazoo. I was pretty good at handling them but I used the techniques the shrink taught me :icon_smile_lachuh: so yeah there that's saying something.

I have a followup with him in about a week and a half so I guess I'll talk to him about that but really. Stretching and trigger point therapy is the way to go!

[webslave]

Well, clearly you do have anxiety, and you do have trigger points.

Trigger points can be difficult to resolve. I have some in my shoulder from using this accursed computer, and despite hitting them with the Theracane, they can take many treatments to remove and are prone to returning quickly if I forget to keep my correct posture and sit badly at the desk.

[Rusty]

Well they decided to take me off Ativan and I am now on Klonopin 1mg a day. Also they gave me Sertraline which he said is for generalized anxiety. Great. I never needed this stuff before and I did all sorts of things my friends with anxiety dread. I love presentations in class, I always ask out girls, I swear I'm fun at parties aha. And now I need them? Because of CPPS? Ahhhh :sad: ugh

Oh well. Oh yeah and another thing. My pain isn't gone(obviously) so the therapist didn't succeed in getting rid of my pain. I feel a huge knot in my pelvis on my left side and that's specifically where my pain is coming from. The iliopsoas muscle. Actually the pain in my lower back is getting worse! My whole leg now all the way especially my thigh is hurting. All of my leg feels like a tightened up log. I told the doctor and he said it might be a nerve problem that I'll be getting an MRI soon. I think it's that muscle pulling on my lower spine. I already had a lumbar spine sprain from it and I don't even do any heavy lifting. I quit my job a long time ago.

More specifically, I got off the benzos for a few days and that's when all this new pain stuff started happening. I'm guessing the benzos were relaxing the muscle enough and without them, the muscle just kept tightening more and more until it pulled too much on my lower spine causing nerve problems for my whole leg. Ugh.

This really is quite a hassle and a pain to deal with. But I've noticed it's different for everyone. Or like there appears to be little groups amongst us. Like some of have this, but not this, and this works well and this makes it worse. Maybe we can find some connection or something in the little groups where stuff helps us. I know alcohol helps me and I read on here some people go into crazy pain after drinking a little. Wish there was some kinda explanation for everyone.