A Headache in the Pelvis, case history #1
Posted: Fri Jul 25, 2003 1:13 am
Forwarded to me by David Wise, co-author of A Headache in the Pelvis:
In the summer of 1998 at the age of 21 I started to experience urinary frequency. It started out mild. In the mornings I would wake up to urinate and then lie back down in bed and not feel that I had completely emptied my bladder. I ignored it at first but after it persisted for a couple weeks I decided something must be wrong and went to see a urologist. He was unable to culture anything from my prostatic fluid - the extraction of which was the first of many uncomfortable and unnecessary procedures. He decided anyways that I must have a low-level infection of the prostate.
I started taking antibiotics and it seemed to help at first - the first of a myriad of expensive and unnecessary medications which seemed to help at first. Before I finished the medication the symptoms returned and after it was finished, they remained. The urologist was unable to provide any further recommendations.
The next urologist I saw in December of '98 had me pee into a uroflow device to measure my flow rate. He printed out a nice little graph to show me how my flow rate was lower than average and informed me that I had a urethral stricture which would require a dilation under general anesthesia and a prescription to Hytrin. Anxious to be rid of my symptoms, I eagerly underwent the procedure. Afterwards there was a measurable increase in my flow rate and a significant reduction in my symptoms which lasted for some time (how much time I cannot remember - it was somewhere from a few days to 2 weeks at the most). I started taking Hytrin. When I called the urologist several weeks later to ask about my returning symptoms he instructed me to keep taking the Hytrin, which I did for several months to no avail.
My symptoms gradually worsened, but I did not experience any pain - only frequency. Also, interestingly, I learned that my grandfather had experienced identical symptoms to me from the time he was 18 up into his forties, but from his descriptions they did not sound as intense as my own symptoms.
I moved to San Francisco in August of '99 and made an appointment to see a doctor at a prominent university whose specialties included chronic pelvic pain syndromes. He suggested that I might have interstitial cystitis and recommended I undergo a cystoscopy with hydrodistention of the bladder under general anesthesia to verify this. In the procedure, under anesthesia they insert a tube up the penis into the bladder, fill the bladder full of water and take pictures to see if there is any ulceration when the bladder is stretched). In February of 2000 I underwent the procedure and the results were uncertain. It was a "soft call" as to whether I had IC. I definitely lacked classic IC symptoms (no pain, no prominent food sensitivities) but the doctor could think of nothing else it was likely to be.
Soon I began a cycle of trying out new medications, becoming excited that they were working at first and then quickly becoming disappointed as my symptoms returned and remained. The frequency gradually became worse than it had ever been before, but still it was only frequency and not pain. There was some extremely uncomfortable frequency at times (bathroom visits 15-20 times a day and 4-6 times a night) but nothing I would describe as pain ever manifested. Also at this time I was beginning a new job which was significantly stressful. In retrospect I think this (stress) was a major factor in the worsening of my symptoms, along with a spiral of hopelessness as each new medicine I tried failed to help. I tried the usual battery of meds that is prescribed for IC and after 6 months when it seemed they were not working at all I began to try other things such as numerous over-the-counter herbs, additional prescription antibiotics of different types, the hypertension drug amlodipine, etc. etc.
I estimate I tried 20-25 different medicines or products over the life of my symptoms, none of which helped me to any significant degree. I tried transcutaneous electrical nerve stimulation. I underwent 2 urodynamic evaluations at 2 universities (both requiring catheterization pushed up through the penis into the bladder while awake) and there were no remarkable insights gleaned from either study. I spent countless hours combing the internet and the university medical library for some additional scrap of information that might prove useful.
Eventually I stumbled onto an article written by David Wise on http://www.prostatitis--dot--org called "The New Theory of Prostatitis as a Tension Disorder". I contacted David and since he was in my area I went to see him in November of 2000. I made some half-hearted attempts to start the relaxation therapy at home but didn't really begin it in earnest until early January, 2001. It was very difficult to sit through an entire tape at first and I squirmed and fidgeted throughout most of the tape. The therapy certainly teaches you patience.
At this time I also began seeing a physical therapist recommended by David who specializes in CPPS. With the combination of relaxation twice a day and physical therapy once a week I slowly began to see some steady improvement in my frequency over many weeks' time. It was always the case that I felt better for a day or two and then felt worse again for a stretch of days, but over time the good days began to outweigh the bad. The good days that I did have were the best days that I'd experienced in over a year. These days were extremely encouraging and the memory of them is what carried me through the bad stretches, although after many bad days in a row it was often easy to think that I had been fooling myself. When a good stretch occurred though it seemed unmistakable that my symptoms were improving.
I had many good stretches that occurred with increasing frequency throughout March, April and May, and by June '01 for the first time since they had begun I felt that I had a solid handle on my symptoms - that I was on the sure path to healing myself completely. I would definitely become cocky at times and stop doing the relaxation for stretches. My symptoms would not immediately return but if I persisted in a chronic state of stress for some time without paying attention to what was going on in my pelvis then they would creep back and suddenly demand my attention. In fact I can still say that this is the case - that I experience low-level symptoms from time to time - but they are not something I fear anymore because I understand the factors that lead to their appearance and the factors that lead to their abatement. In addition the intensity is very, very minor compared to what it was at the height of my misery. Most of my days now the symptoms are so subtle when they are present that they hardly enter my consciousness and I experience myself as having completely normal bladder behavior. I practice the formal relaxation less frequently now (2-5 times a week depending on how things are going) and my pelvis seems to be perfectly happy with that. I live my life in a more relaxed state overall and that makes all the difference.
I consider myself lucky when I read other peoples' accounts of their experiences with CPPS. However I would not hesitate at all to describe my own experience as a waking nightmare. I remember in the midst of it coming home from work exhausted and collapsing onto my couch in tears, not sure if I could hold down my job, if I would have to move back home with my mother, etc. My social life was severely impacted. I skipped countless activities on account of how uncomfortable I felt and because I dreaded having to go to the bathroom every 30 minutes in public. I didn't date for 3 years. I sunk further and further into misery and desperation.
I believe my symptoms would have continued to worsen had I not found David's article online. The relaxation techniques were a godsend for me. They have helped me in more ways than in just the abatement of my symptoms. I feel more centered now, more at peace in general. In one way of looking at it I can consider my symptoms to have been a gift, because they are the only thing that could have led me to devote so much of my time to the relaxation, which in retrospect I desperately needed though I have never thought of myself as an uptight person. I have never battled with depression except as a result of my symptoms. I have only experienced mild anxiety from time to time and always as a result of outside circumstances. However I believe now that I am genetically predisposed to holding the tension that I do feel in my pelvic muscles. I say it's a genetic predisposition because of the fact of my maternal grandfather's identical symptoms and the existence of bladder problems in general on my mom's side of the family.
During the course of my own symptoms there was much ebb and flow, and during the ebb it seemed that I was doing something right - that I might actually have some control over it - that I might be improving overall. It was in fact a little hard to remember during the ebbs exactly how bad my symptoms had been, even when they had been utterly horrible just a few days before. David Wise told me one time that this is the nature of pain - that it can have a sort of out-of-sight, out-of-mind quality (or out-of-feel, out-of-mind, as it were).
On several occasions I made decisions during the ebbs to do things that were not in my best interests in terms of my symptoms - like drink some alcohol (which always aggravated my condition), or stay up really late, or, on several occasions after I began David's treatment, to stop doing the relaxation every day b/c it was inconvenient and b/c I was convinced I could continue to improve with only the physical therapy (which was the other half of my treatment at the time) Most of these decisions definitely delayed the healing process, but in retrospect I think they were necessary bumps in the road... necessary for the learning I had to do about the nature of my problem, so truly I cannot say I regret those decisions though they caused me additional struggle.
Another metaphor I have found useful is that one's pain can be like a compass - it's trying to lead you to where you need to be. The story of my own struggle has in a sense been the story of learning to read my personal compass and to trust it and check in with it every now and then, with the goal of not having to check in with it at all b/c I am following it all the time without effort. When I was physically suffering it's like the compass was shoved in my face and I would get really gung-ho about the relaxation. When the symptoms abated I started to wander off the path, but like I said this was necessary for learning. Now the compass is much clearer to me even when I'm not suffering and I can detect the path intuitively and follow it instinctively, though as you know I still have minor symptoms occasionally. I am no longer afraid of the symptoms however (a little annoyed perhaps at times) because I know with certainty where I have to follow in order to be completely free.