My battle with CPPS began in January 2015. I will summarize this chapter of my journey quickly. Basically, shorty after my first flare up, which presented as radiating abdominal and testicular pain, I visited my family doctor. I was put on Bactrim for a month, but had an allergic reaction after three weeks. I was then put on Doxycycline for six weeks. After being on antibiotics for so long, I felt terrible, but my pelvic pain had improved. My doctor told me I had a prostate infection. I didn’t look further into it at the time. Looking back, I am surprised my condition went into remission, but I am convinced part of the reason it did was that I was absolutely convinced it was an infection that was cleared. Interestingly enough, I was still having minor symptoms in late April 2015, but doing much better. I was having sex with my girlfriend as much as I wanted with only a little discomfort. The rest of my discomfort slowly went into complete remission by June 2015. At this point, I thought my pelvic pain was a thing of the past. I had just gotten into grad school and was on top of the world.
Things were going well until October of 2015, when my girlfriend and I broke up. I was devastated. At this point, I had still not had another flare up, but emotionally I was a mess. On December 18th, 2015, I had an unprotected one-night stand. Immediately following this encounter, I was extremely paranoid I had contracted some disease, and I obsessively looked up symptoms of STDs. In the weeks following, I started experiencing allodynia on the tip of my penis, and bladder discomfort. I should mention that I have always had issues with frequent urination growing up, and I even remember visiting the doctor in high school for frequency issues. At the time I was told that it was in my head, and I needed to train myself to hold it in longer. Anyway, at this point (December 2015) I had quickly sunk into an obsessive mess. On top of my obsession over this sexual encounter, I was dealing with the fallout of my breakup. I felt extreme guilt about my pelvic pain, like I had let my parents down. Heading into January 2016, I was still handling all of these issues on my own, albeit not effectively. I obsessively did research on prostate forums, looking for concoctions to remedy my “infection.” I was honestly freaking out. I visited my family doctor again, and he performed a rough prostate exam. I was told it felt boggy, which further convinced my speculation of an infection. The prostate exam took this flare to a whole new level of pain and discomfort, and shot my anxiety up to a level I had never experienced.
I was back at college, living alone and working for two weeks until my roommates moved back in. I would go to work, constantly thinking about my pelvic pain, and then get home and do research all night. The prostate exam I had received had made it feel like I was constantly sitting on a golf ball. My penis had little feeling in it, and had that “hard flaccid” characteristic I’ve seen mentioned on this forum before. I was experiencing spontaneous episodes of sobbing uncontrollably. I was not sleeping well, constantly getting on my phone in the middle of the night “doing research.” I had been given two weeks worth of Cipro, but was refusing to take it after reading up on the side effects. I was allergic to Bactrim, and didn’t feel like Doxy would work because it didn’t fix the problem completely last time. Associated with this fear of antibiotics was the vivid memory of how terrible they had made me feel the previous winter/spring. I had thought my battle with pelvic pain was a thing of the past. I was not emotionally prepared to face this battle again. I felt trapped. I thought antibiotics were my only option, but I was extremely fearful of getting “floxed” (the name given to those who have bad reactions to flouroquinolines. At one point I laid in bed and literally thought I was going septic due to not treating my infection. My parents knew about my flare up at this point. I was obsessed over killing the infection off for good this time. I got multiple tests done for STD’s. I had a full STD panel performed 12 weeks after the sexual encounter, and everything came back negative. I got tested for Mycoplasma, and got a semen culture done which came back negative. I was lost. What was causing my pain?
It’s now late January 2016. I’ve moved home despite the semester starting up in a few days. I had sunken into a deep depression. I was having multiple panic attacks a day. I could barely get out of bed. At this point I had a bottle of Cipro, levaquin, and doxycycline, none of which I had taken. I was so scared of the side effects. It was increasing my anxiety tenfold. I finally ended up at the ER at the University of Iowa due to pain and depression/anxiety. There I saw a urologist who convinced me to start taking the Cipro.
I moved back to school and tried to start the semester. I’d been put on fluoxetine for depression and given lorazapam for anxiety. I was also taking Cipro twice a day. Unfortunately, I was in no state to start school. On the fifth day of taking the Cipro, I woke up in the middle of the night feeling like my legs were on fire. In the days following, I developed very sore knees, elbows, neck, and back, as well as neuropathic burning in my legs and arms. On top of this, my pelvic pain worse than ever. This pushed me past the breaking point. I was suicidal. I didn’t have any hope. My entire body was in pain, and I just wanted to escape it. I called my parents and told them what was going on. They drove to my university and got me, took me the hospital again, and I ended up at an inpatient psychiatric unit for major depressive disorder. The worst part of everything was that I couldn’t relate to anyone. No one understood my pelvic pain. None of the doctors really believed that the antibiotics I taken had caused nerve and joint pain.
I spent three days at the hospital, and it was truly the beginning of my improvement. I started on doxycycline at the hospital, which provided a little bit of relief from my pain. After getting discharged, I spent the next few weeks at home. My grad school program was very understanding. I somehow was able to return to school in mid February and finished the semester. It was a struggle, but I powered through. I stumbled upon this forum in late February. At this point in time, I was still struggling with my depression and having panic attacks. I also still researched a lot of information. I was still constantly in pain, both pelvic and from the bad reaction to the Cipro.
I only took the doxy for about two weeks before tossing it aside. It made me feel like crap. I was done with antibiotics. I was determined to find another solution. My parents have very good insurance, and I had gotten an appointment at the University of Iowa urology clinic. They wanted to take a multi-modal treatment approach, combining antibiotics, alpha-blockers, anti-inflammatories, and physical therapy. I chose to only go with the physical therapy. I was tired of medication.
(I’m not going to get into it but I was able to overcome my reaction to the Cipro over a period of a couple months with the help of a supplement/dietary protocol.)
My physical therapy was the turning point. It was late February when I began receiving internal trigger point therapy. My therapist was very sympathetic and understanding. I was given stretches to do as well. I had to drive to Iowa City every week but it was worth it. I started to see very slow improvement. I was still consistently in pain, but I would have moments where the “hard flaccid” look and feel to my penis would disappear. This was very common in the hours following my PT. I began going to a professional yoga studio about five times a week, where I learned Hatha 1 & 2. Yoga was not only crucial to my physical health, but my mental health as well. I luckily lived near a very good chiropractic school, and started getting frequent adjustments. I ate very healthily, sticking almost exclusively to chicken, rice, and broccoli. I tried to avoid gluten, although I wasn’t perfect at it. I typically avoided alcohol, although sometimes I would go out on the weekend and sacrifice a flare for a night out with my friends. Weed caused flares so I avoided that as well.
Improvement was very slow. I want to emphasize that for those who are starting out with this condition. As of today, I sit here without any pain. I am not 100%. I still have tension in my pelvis, and occasional burning in my bladder. Some days I feel 90%, and some days I’m at 75%. However, I never thought I would get to this point, even as recently as mid-April. It has not been easy, but I have learned a lot about myself and I still have a long way to go. Despite my improvement, I am far from a model patient as far as following a strict protocol for improvement. I go out with my friends a lot and I’m convinced if I completely cut out alcohol, then I would be feeling even better.
I am now able to eat whatever I want without causing a flare. I can drink alcohol and coffee without much an issue. It does cause frequent urination , but I have always dealt with that since I was young so it doesn’t bother me much. Alcohol does occasionally cause some discomfort the next day if I have too much, but I don’t flare up nearly as much as I did several months ago. Ejaculation can still cause some minor discomfort, but it’s much better than what it was. I am now going to try and give you a quick guide to my personal protocol that helped me get to this point. I apologize for the length of this post!
Over the past six months:
- Internal release therapy
- 1 time a week (also bought a Therawand and did a little internal work myself, but struggled to be as effective as the therpist.)
- Starting in April, I began going to PT twice a week until the beginning of July, currently go once a week but plan on taking a break for a month or two to see how I fare.
- Chiropractic Care
- Twice a week for a month, than once a week, now I go once every two weeks
- Had a breakthrough in April, got my S3 sacral region adjusted and had noticeable improvement in my bladder burning; all I can say is make sure you visit a chiro who is legit and reputable; luckily I live next to an institute with a great reputation and my doctor is brilliant; goes into the science behind his thought process (sympathetic v. parasympathetic, autonomic & somatic, ect.) ; listens to my concerns and doesn’t think I’m crazy; open to the effectiveness of meditation, yoga, etc.
- External therapy
- Theracane and lacrosse ball; I roll my glutes on the lacrosse ball, use the Theracane on my perineum and back
- Foam roller used for IT band release and to roll out my back
- Yoga: Went to the studio about five times a week for two months; now go about twice a week and do home practice three times a week; plan on becoming certified in the future and implementing it in my practice as a therapist
- Supplements
- I take fish oil everyday, brand is controlled labs
- prescript probiotics-pricy but worth it in my opinion because they are one of the few companies that have scientific data backing up their cultures; this particular probiotic also doesn’t just pass through you but actually lays the foundation for populations of good bacteria to grow as you continue to take them
- prebiotics-Inulin and tummy fiber; feeds the good bacteria in your gut
- Buffered Vitamin C
- Took any accredited quercetin product for the first three months; no longer take it because I seem to be beyond the threshold of needing it anymore
- Magnesium-there is tons of varieties; settled on Magnesium-L-Threonate, this particular kind is the only type that can cross the blood brain barrier; I was deficient in magnesium; I took two a day for about for months and I had a renewed ability to focus and think that my anxiety had previously robbed me of; very important as far as schoolwork/focus, no longer taking it but plan on ordering more
- Fluoxetine (Prozac); antidepressant that definitely helped pull me out of the dark place I was in, still currently take it and have no plans to change
- L-Theonine; has a calming effect, often take it when I have coffee prevent jitters and reduce pelvic floor clenching, shop at bulk supplements.com
- Lorazapam -No longer take this but have it in case my anxiety were to shoot back up due to a flare or panic attack
- Prelief- This one is huge! You can buy it at Walgreens. It removes the acid from foods, I take it all the time, anytime I have coffee or a meal, I take two to help protect my bladder; I encourage you guys to try using it.
- Vitamin D-5,000IU haven’t been taking over the summer but will resume in the winter
- Vitamin K-take with Vitamin D
- Diet
- Kefir, contains tons of live cultures of good bacteria for your gut!
- Eat your vegetables! Seriously guys, my diet before both my first major flare and second major flare was not balanced; full of bad carbs, fast food, etc.
- Fruit; same story here; apples are great, and along with veggies, provides enough fiber to keep things moving down there which is key!
- Fiber, fiber, fiber
- Avoid fast food; I rarely eat fast food burgers anymore, although I still slip up sometimes; places such as Subway or Jimmy Johns are fine!
- I tried gluten free for awhile, but I just couldn’t do it. It seems in the early months of my flare diet played a bigger role but now that I have things more under control I can eat most anything I want without much issue
- Sleep: Not getting enough sleep affects every aspect of your health; you need it!
- Exercise: This can vary for everyone. I’m currently back to weightlifting without causing a flare, but initially I would just go to the gym and run a mile on the treadmill. Jogging really did seem to make a difference for me as far as loosening up tension. I always focus on trying to relax my pelvic floor as much as possible while lifting
- Sex: I’ve had sex with multiple partners since I’ve been flared, and it doesn’t cause much of an issue as long as I use protection; unprotected oral does not cause an issue; as far as masturbation-do not edge! What I’ve noticed helps is to avoid watching porn when I masturbate. For some reason, I think it is my natural tendency to edge if I watch porn while masturbating, but if I just use my imagination to reach orgasm is much more natural and causes less issues. I also avoid more than one orgasm a day.
- Reading: Headache in the Pelvis; Paradoxical Relaxation; The Mindbody Prescription; The Power of Now; Loving What Is; Psycho-Cybernetics; There are so many more books I need to read that will help improve myself and my mind frame as I continue to deal with this condition
- Counseling: Talking to a counselor at my university helped tremendously. He really helped me quit researching my condition and get back to living my life.
- Other Tips: What helped me the most is accepting my condition. These are the cards I’ve been dealt. Reading Dr. Wise’s books helped reach that point of, “if I never get better beyond this point then I am okay with that.” It has to be genuine though. You have to accept the pain, befriend it, love it, and not worry about whether or not you are ever going to get better. We are not special. Millions of people all over the world deal with different health issues, this just happens to be ours. I still have insecurities about it. I’m working on it though!