Before I posted my story, I wanted to take some time to think about how I was going to write this. As with most of us, there are multiple factors that contribute to this condition. For me, at the beginning of the pain, my world was spinning from several factors including fear of infection even though from the start, there was no sign of infection. I've had a ton of emotional stress, and life stresses that I believe have contributed as you may see in my story below. I have a lot of very personal events in the story, but I include them because I think they're somehow important toward CPPS.
A heads up that this is a long post, and my apologies if it is boring or seems insignificant in places. I feel that the series of events are important that lead up to my diagnosis with CPPS/CP. Each event is like a heavy brick that lead to something snapping. I don't expect anyone to read this through all at once, nor to not skim some parts. But I hope that maybe someone will see similar factors with their own situation and be able to relate, or see a common cause that may also have been conducive for their own CPPS, like pieces of a scattered puzzle coming together.
PART 1 - The Ranch
In May of 2013, I left Michigan to work on a dude ranch in Jackson Hole, Wyoming. I went from a desk job in mortgages, to a maintenance guy, helping to keep the ranch going at the foot of the Teton Mountains. I was 45, and could not stand sitting in a cubicle any longer. I wanted to live life and build some adventures.
In a nut shell, the experience was great. The first season, 2013, had it's ups and downs. I worked and lived with mostly 20-somethings, and that was the most difficult part for me. I (used to) be a light drinker. These kids go nuts. Not only did I have to spend the day working with early to mid-twenty something people, I also had to live in the crew area with them. In summary, it was a huge adjustment for me. But I did pretty well the first year. I had a crush on one of the female wranglers who was 26, but it was all from afar. When the season ended in October, I was a little lonely, missing my friends back in Michigan. But I was not ready to go home. I headed to Bellingham, WA, and lived there for about 7 weeks (thought it would be longer). I had a brief long-weekend fling with a great woman in mid-November (which I thought would last longer too, but didn't). When it didn't work out, I headed to Colorado where I have a few friends. I struggled to get work there - while having a broken heart from the girl in Washington. I lived with a friend who had crazy boyfriend.
THIS IS ABOUT WHERE I THINK THE CPPS SWITCH BEGAN ACTUALLY FLIPPING TOWARD THE ON POSITION. The year before was a bit of build up, but here is where I started to have real anxiety symptoms. I was very worried about my future, my job, my life. I felt very transient. Colorado was NOT the place it used to be when I visited as a kid. People there make great livings, but I couldn't find decent paying work. The job I did manage to find was very stressful.
When I got the call to come back to the ranch in Wyoming for season 2, with an offer of promotion to Foreman, I decided that was my best option. In March, I left Colorado, and came back to Michigan for 7 weeks before heading back out to Wyoming.
Season 2 on the ranch started wonderful. I was so excited to be back. I felt confident, and it just felt good to be back on the ranch, with most of the old crew, and a few new people.
One of those new people turned out to be trouble for me - and helped to be a major switch-thrower for this condition.
(Maintenance guys have to arrive at the end of April to open the ranch before the guests get there, and over the first couple of weeks, employees arrive.)
I had just come back to the ranch after being in Jackson for coffee one Saturday morning, and walked into the main lodge kitchen.
This girl, who was new and had just arrived a few days ago, came in while I was making lunch for myself. I hadn't talked to her before, but we struck up a conversation. She thought I was much younger than I actually was, as it turns out. When I told her my real age, I thought she would back off, but she didn't. She wanted to go for a hike that day, so I agreed.That was the beginning of a very tumultuous roller coaster ride with her that lasted all season. It was both a blast, and very painful.
It was about two weeks after our first hike together that we found ourselves one Friday evening having drinks around the crew campfire. As people peeled off to go to bed, she and I were the last to remain around the embers of the fire. She invited me back to her cabin, where we listened to music for a while, and watched YouTube videos. Somehow, we ended up making out, and fooling around pretty heavily. A few hours later I wandered in the dark back to my cabin trying to get my bearings, and figure out what had just happened. I didn't know what to think of it.
(I just want to add that she and I, during the entire season, never had intercourse. In fact, I never got off, though she did. I was on a BP med that made performing a challenge, and apparently neither of us had the patients to worry about my end-result. I also wonder now, if it was really just a ton of anxiety that was causing me problems with performance).
The next day, Saturday, everyone ended up going to the Brewfest in Jackson. I arrived a little later, and she had had a few beers. But she was of course ignoring me. In fact, she wouldn't even look at me. Now usually I'm the kind of guy who would say "well, she's 22 - what do you expect?" I let it go and just socialized with other people.
My daughter texted me, so I left the event for a little while. When I came back into the beer tent, she was hanging, in a very suggestive and interested way, on a very large, gorilla-like guy. She looked at me then, and just looked away. I both surprised and then not surprised. Either way, it stung. Maybe it shouldn't have, but it did.
The tent closed late afternoon and I broke off with a group and went to Pinky G's. She went to the Million Dollar Cowboy Saloon with that guy and some other people. I did talk to her alone for a minute before we split off and just kind of said "Really?!" I guess when I walked away she cried.
Later, while sitting and socializing at Pinky G's, I feel a hand on my back and turn to find it's her. And then, right along with her is the Gorilla. I couldn't believe it. They ended up standing on the other side of the room and talking. Eventually I left back for the ranch. It seemed like she'd probably go home with this guy, so I just tried to not think about it. But she didn't. Another one of our wranglers apparently talked some sense into her that night, and she ended up staying at that wrangler's boyfriend's place, on the couch.
I tell this story because this set up the rest of the season with her. After the gorilla guy incident, she ended up apologizing to me a couple days later, and we started doing fun stuff together again. We would go on hikes, or fishing, or just hang out on my cabin porch and talk and laugh. It was fun, and despite the age difference, we got along incredibly well.
But a pattern developed where having fun would lead to making out, and then she would feel guilty for a while, and barely talk to me for a week. Then when she did talk to me, we start to have fun again, and eventually would lead to spending most of the night together, making out, falling asleep, and then sneaking back across the crew area lawn to one of our own cabins. Then ignoring me would start all over again, and then easing back together, to the same end. Over and over and over.
In July, she had a male friend visit for a week. I had know he was coming since our first hike, but as time went on I'd hoped she'd cancel his visit. She had been communicating with him since before she got to the ranch. He came up from Texas for a week, and she was gone with him all weeknights long. It hurt like hell (despite the fact I knew full well our own relationship would never really go anywhere). I actually got myself over her and stayed away from her for about 2 weeks. Then she started talking to me again, and we started up our pattern again. I was a little disappointed with myself for letting things start up again, but I just wanted to have fun to the end of the season in October. That was my goal.
She said goodbye to me a week before she left the ranch (I had to stay another week on top of that). So for a whole week, she pretended like I wasn't there before she left. She did say goodbye the day she left too.
Looking back, I remember all the nights I went to bed while she was out with other ranch people going dancing, and I was so angry with myself for having any feelings for her. I could feel a huge weight that I was carrying about our relationship, and all the pressure from other people knowing and talking about us on the ranch. But after a year and a half of feeling very lonely, it felt so good to be with her. We had that click that you only get with a few people in your whole life. Also, I couldn't really get away from her enough to get over the whole thing. She was always there, every morning, every meal, I'd see her. I was angry with myself for not feeling strong enough to completely forget about her and move on, I felt like a fool, though I did my best to just stay away from her and let her come to me - which she always ended up doing, coming back to me.
It's sort of accepted that ranch life is in it's own bubble, and there are often weird pairings of people of different ages. It happens a lot. Not sure how it happens, but it was so easy to forget our age difference most of the time - except for the times she acted like a silly high school girl.
PART 2 - The Transition Back to Michigan
My foolishness didn't end with the wrangler girl. In September, I had been communicating with a woman on Match.com who lived back in Michigan. We had talked on the phone quite a bit. (I have since sworn to never use Match.com again.) She seemed pretty cool, and she was just a couple years younger than me. In the back of my mind, I was desperate for a distraction and escape from the broken heart the wrangler girl caused me. I knew it was a bad idea, but I proceeded anyway.
This woman was a paramedic. Somehow we came up with the idea that she would come out for part of my last week on the ranch while I was closing, and then drive back with me. We solidified the plans. At one point, I told her to forget it. I cancelled the whole thing. But then, something happened and the thought of having company for the drive back to Michigan sounded good, so I uncancelled it with her.
I should have just NOT uncancelled it. She arrived the day after the wrangler girl left. She was a very kind woman, but after a couple of days with her I knew I wasn't interested. I told her that it wasn't working for me romantically. She was upset but suggested just have"fun" - the sexual kind. Normally I wouldn't have agreed to something like that with someone I'm not interested in.
We ended up having sex a couple times. There was a jacuzzi in her hotel room, and one night we used it. The third time while we were having sex, something happened for me to where I just suddenly was over it. I just wasn't into her and I had to stop. That was the last time I touched her. A few days later, we were on the road back to Michigan, and we actually had a great trip. When we stayed in hotels for two nights, we each had our own beds. I felt a huge relief after we got back and I dropped her off at her house and said goodbye.
I regret to this day not having the intestinal fortitude to just drive home alone. I regret wasting time with the paramedic. She was a great woman, but regardless of that, it was just such an uncharacteristic stupid move on my part. But what's done is done, and I've definitely learned from it.
PART 3 - The Final Big Bang
My plan was to arrive home at my folks and live there for 2 months while I obtained new employment, get my own place, a cat, cut a new album (I'm a musician), and book gigs in Michigan. While in Wyoming, I had booked myself a weekend up at Mackinac Island (in northern Michigan) the weekend of October 13, just to decompress from the ranch, and immerse myself back into the Michigan landscape. I used to perform up there a lot, so it feels like home.
Things didn't go as planned.... at all. The first morning I woke up on the Island, my mother calls and says my father had congestive heart failure, and they're at the hospital. She tells me to stay on the island, that he's fine. I reluctantly agreed. When I called her to check on him later, she said he's going to need a triple bypass.
When I got back to Grand Rapids, my father had the surgery. It turned out to be 4 months of a horrible, long recovery for him where we watched him suffer, and skirt along death many times. He has type 2 diabetes, and it complicated everything. He was out of his mind for much of the time due to drugs, and hospital psychosis. It was so hard to watch my mother suffer too.
I was still in the mental mode at this time to get myself settled and set with a job and place to live. My stress with all of this was over the top.
A couple weeks after I got back from the Island, I met and started to communicate with another woman. Looking back now, another HUGE mistake.
I was already under enough pressure, but my train of thought was: "it would be nice to have a friend now to help me get through all of this."
This woman seemed to be into me from the beginning (which should have been a red flag).
We had a great first date, kissed in the car afterwards. She would text me every morning in a very comfortable way. We had a few other dates, and ended up having sex. Looking back, the first time out of the three times we had sex, I vaguely remember having a faint burning feeling in my urethra within the first couple of minutes. I thought it was soap irritation, and ignored it. That first time, as we were having sex in the missionary position, she reached around and pulled on my scrotum. I've had that done to me before and women have always done it gently. Not this time. She pulled hard, and it hurt. Just as I was about to say stop, she had already stopped. I let it go and didn't think about it again (for a while).
A week later, we attempted sex again. Earlier that day, my aunt who had come from Texas, had a talk with me by the elevators at the hospital and told me that I needed to be there for my mother, and to help her handle my father (my father is difficult). Her words bothered me all day in a very deep way that's hard to describe. They put more weight on my that what was necessary, from what I thought. I was already doing all I could for my dad. So, that night, the new woman and I had a date, and tried to have sex, but I was unable to perform.
Something horrible happened at that moment. While I was sitting there, breathing hard from trying to attempt to get it up, she looked at me and said "If this is going to be a problem then..." Her ultimatum hit me like a Mac truck. Having ED was relatively new to me, and I thought it was probably from lisinopril, my blood pressure med that caused it. I had had small bouts of it with my Ex back when I was out of shape, and stressed out, but nothing like this. I had NEVER been with a woman who was not understanding and patient about it. This woman now showing her true colors was like a sword through my heart. I started shaking, and my anxiety was a like fanned flames. My face was in my hands, and then I turned to her and said "Are you serious? You're just going to break this off because I'm having a little problem right now? It might be the alcohol or my BP med." I think I had even taken a half of a viagra, and it wasn't working. I can see now that I was under WAY too much stress, pressure and anxiety to handle anything like a new relationship.
The ironic thing here is that this woman had told me she had NEVER had an orgasm with anyone during sex.
I forced myself to get off while going down on her that night, but at one point, I was so angry with my body that I remember tensing my pelvic muscles as hard as I could, in some desperate, angry attempt to get myself hard. It was dark in the room and she didn't notice it. A week later we had sex for the last time, and was able to perform, but I didn't finish. I had taken a half a viagra, and after a while I could tell she wasn't into it, so I stopped. Again, during this episode, she pulled on my testicles again, and it was not done gently. Again, just as I was about to say stop, she had already stopped. I thought that her lack of gentleness was due to her just not paying attention.
We ended it a week a later, but not without some fears of STDs. She told me on the phone that she didn't realize it but she had just been tested positive for HPV. Later, after my doctor suggested an HIV test, it hit me that I didn't even consider that I really didn't know her that well. That's when I realized the hole I had fallen into. The HIV tests were done at 1, 2, and 4 months... All negative, and i spent that time extremely terrified and stressed out about that. I had even contacted her about testing and she said she had been tested before me and it was negative. But then we went round about time frames for a while. It was awful, and a HUGE wake up call to never be careless like that again. Before last fall, I've always been more cautious. A definite sign of my state last half of last year, I'd say.
About a week later, I started having bad dysuria, and testicular pain, especially on the left side where I have varicocele. It's always been a stage 1, but now it was swollen to about a stage 2. First thing I did was call my PA friend, and he got me some antibiotics. They were weak ones, and after taking two days worth, I wasn't noticing any change, so I went to the med center. I tested negative for chlamydia, and gonorrhea via a urine test. But the doctor put me on doxycycline anyway.For a couple days it started to feel better, but then the pain came back, so I went back. They tested me again, and no infection. They added azithromax to the regimen for 10 days on top of doxy. I kept taking the doxy after the zythro, so the whole duration was 21 days, at which point I had gone to the ER because I was still having pain and I was completely debilitated from it. I had NO energy, and the testicle pain was bad too. Everything down there hurt. Pubic bone, groin, perineum, penis, bladder, prostate, and the tip of the penis pain.
The ER doctor tested me and said I could stop the antibiotics because there was no sign of infection.
I was glad to stop, but my pain went on for months.
Since then I have:
- Been to my PCP many many times
- Tried zoloft which only lasted for 2 days
- Had two ultrasounds on my testicles
- Had a CT scan of pelvis and abdomen
- Tried cymbalta twice, once for 2 days, and once for 3, and I couldn't tolerate it.
- Have had more than 10 blood tests (all negative, and normal), as well as 3 for HIV (Negative)
- Had prostate massage and culture done (negative)
- Had a PA test done (Dr. said it looked good).
- Had my prostate examined many times, by several different doctors, all say it is normal size.
- Had a cystoscopy, all good an normal
- Almost had a inguinal injection done, but talked to the neurologist first because I didn't think it was the right call, and she agreed.
So I'm wondering if being pulled on inflamed that testicle too much. I hope to GOD it eventually heals to the point where it doesn't flare up again. It had actually not been noticeable from February until recently, and I've noticed ejaculation aggravates it, and seems to bring it out of remission.
The journey has been complete HELL. But I think I'm finally seeing some improvements.
Since I've stared the physical therapy, reading A Headache in the Pelvis, doing my own trigger point therapy in between therapy sessions, walking twice a day, no coffee, no alcohol, no acidic or spicy foods, and stretches assigned to me by the therapist, and taking Flomax, I HAVE noticed a slow improvement.
The past 5 days have been better on average, except for my epididymitis, which creates a horrible anxious pain that drags me down. That has been flared up for two weeks, and usually seems to take 3 or 4 weeks to resolve.
For months, I was sure that this was some sort of infection. I still have a really hard time wrapping my head around the fact that it is NOT some kind of microbe invader causing an issue in my pelvic, and reproductive tissues. But I'm starting to make educated progress that this is a psychoneuromuscular disorder.
For months I was in the worst misery. I felt I had aged 20 years, and that I was completely done for, especially during long flare ups where I would be in bed for virtually two weeks, trying hard to break away to go to the store to get some food.
I also have a skin condition that I've been fighting on my bottom lip called actinic cheilitis, or sun damage. It's pre-cancerous. I believe it is a huge stresser toward CPPS because I have to freeze the bad layer of skin off with dry ice, or as was most recently done by a Dr., with liquid nitrogen spray. After this is done, the patches of skin on the lip swell up, blister, and scab over and look like a hellish case of herpes. It's the worst feeling to be in public during the 8 days it takes for that to heal to the point where it doesn't look like hell. I've had to have it done a few times since I got back from Wyoming. I had it under control for almost two years, but sun exposure makes it come back. I'm worried about it because when it gets bad, it just keeps peeling, and looks and feels horrible. And also, it could turn into carcinoma, or worse, and then I'd have to have the whole lip removed. I noticed my CPPS symptoms got really bad right after the last couple times I had the cryosurgery. It's scaring me.
I'm devoted to recovering from CPPS as close to 100% as possible. I know it seems most say they get to the 90% range, and that's as good as they get. Maybe that's as good as I'll get (anything is better than where I've been). But I have to shoot for 100% because I want my life back. I'm 47, single, and though I know we all die alone, I do have dreams of growing older with the right woman, or at least having the rest of my life to do what I want to do, and finally find that true happiness.
Ironically, now that I've been forced to look at my life so far, and feeling like it's over, I feel that if I can beat this, I can then do anything I want, and that I will find that happiness.
One thing I've committed to doing is to do something good for other people. I'm considering patient advocacy. I'd like to go back to school and be a medical assistant, but I'm not sure anymore if the medical community is really the best place to help people like us, who feel stuck in this medical limbo land of no answers, and utter hopelessness, and extreme anxiety.
I hate the anxiety. It causes me a horrible nausea that changes my whole outlook in the snap of a finger. I can go from feeling almost normal, to anxiety nausea, and instantly feeling like I've just put the "one ring" on my finger, and all I can see are hopeless shadows, and no happy future.
One of my favorite things to do are my two walks per day where I listen to my 'Death Cab for Cutie' playlist with headphones while I wander the cross country trails of Calvin College, and take pictures of the rabbits, hawks, foxes, and sables I've seen back there.
Find something to do that brings you inner peace where you feel safe, and happy with yourself, as if you are your own best friend for that time. I think it truly helps.
Somehow in all of this, I managed to land a good job back in March. I felt like hell during the interview, but I must have faked it well enough because I got the job. Unfortunately, I had to quit after two and a half weeks because the pain and panic attacks where making it impossible to learn the job. It's damn shame because it was the best paying job I've ever had in Michigan, and I would have been set. But I've let it go because my health is more important than anything, and there are other jobs out there.
I just want to put out there that I'm here to listen for anyone who needs an ear. I'm relatively new with this condition, though it feels like it's been 100 years.
At this point, my worst pain is testicular, occasional perineum ache, urethral discomfort, and trigger points directly around the urethra where it comes out from the prostate and curves forward to go out along the penis. I also sometimes can feel that that trigger point causes pain to the bottoms of my feet, and when I palpate it, sometimes I get shooting twinges. The worst thing is the nausea from anxiety.
Thanks for reading, and best wishes to you on your path to heal. You WILL heal! So will I.
