I didn't want to write this because I was worried I'd jinx my recent improvements and if I suddenly got worse I'd think why on earth did I write this. I've realized that's just plain stupid though, I like to think I'm pretty logical and that's just being superstitious.
I think before I go into what happened back then I should probably give a bit of background of my struggle through this and what avenues I explored and how I ended up here.
I was born with Hirschsprung's disease, which basically means part of my colon was born without nerves and so I couldn't go for a crap when I was young. (I think my flatmate wishes I couldn't go now, especially after a curry
). To fix this I had surgery when I was young which involved cutting through my abdomen removing the section of colon that was a-ganglionic and "pulling through" the colon and reattaching that to the anal cavity I guess, not exactly sure. Now this may or may not have contributed to me developing chronic pelvic pain but I though it was important to mention as it was surgery I had in roughly the same regions as my pain. When I was about 16 and going through my teenage growth spurt I started getting pain in my penis after ejaculation. This would tend to last maybe half an hour to an hour. I didn't think anything of it at the time really. Then, when I was about 22 and 6 months into starting my first job out of university (I work in IT) I started getting weird cramping sensations in my pelvis. My testis would start to ache and my penis pain would come on but worse than before. I was under a lot stress (or least thought I was) and there was this girl at work would was making my life hell. She really liked me, I wasn't interested but she just wouldn't give up. We were in a lab environment closed off from management and she'd just harass me day in and day out. She'd sit next to me all day (and I mean right next to me) she'd try to grab the keyboard or mouse off me and want to do my work for me. If I pulled it off her she'd sit there and poke me in the ribs because I wasn't paying attention to her. I had one of those swipe cards attached to an elastic extendy thing and she'd hold onto that. Sometimes I wouldn't realize and I'd stand up and go to walk away only to realize It was being held onto. This was driving me f'n NUTS but I was really timid back in those days, and I guess I didn't have the balls to go and complain. She'd get really upset sometimes and I felt like I had to go and make her feel better just to make the peace. My friends in the lab were getting fed up too and I was getting $hit from them too. I kinda felt hemmed in on all sides. It was my first job so I didn't want to complain to management and didn't want to be seen to be rocking the boat or causing problems. I felt I couldn't leave cos I thought working only 6 months at a place might show a bad sign to a future employer. In hindsight, with 20/20 vision, and all that it was DUMB really Mother f'n DUMB. I see that now. I think the stress I was feeling from my situation definitely caused my rapid descent. And by the time I thought I should have left I almost couldn't work anyway. I'm not that timid now, If you f*ck me off I'll deal to ya. I've learnt that the hard way. No quarter asked and definitely none given. I feel a bit sad sometimes I've become like this but hey life can be a bitch sometimes and I had to harden up.
So from there, very quickly, my intermittent cramps and pains became chronic and I mean 24/7 chronic. I had horrific pain in my perineum and pelvis. It felt like someone had shoved broken glass into the muscles around my tail bone, my penis felt like it was on burning and on fire ... but cold at the same time. My testis ached like a Mother f*ker and the area around my pubic bone was cold and ached. Going to the toilet was a nightmare. Especially taking a crap. It felt like it was coming out sideways!! and my testicles and penis would start going a shade of blue when I did and OH MAN did it hurt. I can remember times just sitting on the toilet and weeping after a bowel movement.
I could sleep maybe 1-2 hours a night and then I'd try to work through the day, still trying to deal with what was going on at work and my workload and feeling too embarrassed to tell people about what was causing my pain. I told them I had lower back back (which was kinda true in the case of my tail bone but no where near the whole story). But then, everyone had a bit of advice about back pain and I know they were just trying to help but I just wanted them to SHUT UP because it wasn't gonna help me now was it!
I tried to get help from doctors but they had NO idea, not one. Oh, they gave me things like Tramadol and Gabapentin and tricyclic antidepressants but they didn't really help. And that really shook my faith in medicine and has actually opened my eyes and made me sceptical of some medicines (don't get me started on the supposed efficacy of antidepressants or back surgery). I remember after seeing my second urologist (5th doctor) with no help offered in the space of a couple of months feeling absolutely devastated, I was basically broken down in the midst of a suicidal depression. I'd gotten to the point where I thought I just can't go on like this. I don't want to live like this. I was thinking my life was screwed, royally screwed. I thought that I wouldn't be able to work and I'd be confined to this prison of a body I had. I thought ending it was better than going on with what I had. I also remember thinking if some doctor could just give me a date even a year from now it was something I could work towards. It would be tough, real tough to get through but it would give me that light at the end of the tunnel. But obviously that was unrealistic especially seeing as my doctors really didn't understand what I had.
I decided somewhere into this, that, no, I wasn't gonna give up, that wasn't what I was all about. I became determined I was gonna beat this (I wish now I was thinking then "I'm gonna become at peace with this").
Somehow I managed to find out about Dr Wise's site. To be honest when I read what he said it made SO much sense to me. I didn't even realize it was muscles causing my pain at that stage. It seems so obvious to me now though. It was probably one of the happiest days of my life when I found out there was a way to start treating this. I ordered his book (along with the Trigger Point Therapy workbook 2nd edition by Clair Davies another MUST read) and I think I read the whole thing the day it arrived. I was voracious . I took his advice and I cut all medicines, even my pain killers. Within a couple of months I'd found a clinic in Melbourne, Australia and I booked my self into it. I got my first treatment of pelvic pain massage and gained enough confidence to start treating myself. Both externally and internally, as I found that was required. That started making dramatic differences. The first pain to go was my testes pain. I think I managed to get rid of most of that by massaging the muscles around my pubic bone. I found extremely painful trigger points in the front of my anal cavity and by massaging those I managed to gradually remove my penile pain. I also managed to massage the muscles near my tail bone and I think that started removing that feeling of broken glass in the muscles near my tailbone (I wish I'd documented this at the time now). I also started doing stretching/massage of other muscles especially of my hamstring muscles and other leg muscles. I found these had become extremely tight from all the sitting I was doing. I also started looking at the psychological aspect of this condition. I started to realize that, yes, my muscles where in trouble and massage was helping but what got THEM like that in the first place?? Something had been causing me to contract my pelvic and abdominal muscles subconsciously. Pain was a symptom of my muscle contraction but my muscle contraction was a symptom of something else, something deeper.
I realized I had a "conversion" disorder. The stress and anxiety of my work life was causing me to subconsciously contract my muscles. I recognized in times of high stress or when I was really tired my symptoms would deteriorate. The only way to truly be free was to treat the psychological factor as well. I started learning to relax more, I started having dedicated relaxation time just listening to ambient music online. I set myself a goal of getting out of that hellish job and started getting my muscles ready for it. It was probably one of the best moves I've made.
That was about 4 years ago now and it was a struggle. Definitely felt like 1 step forward 5 steps back sometimes. Now, to October last year, I was in my new job and around 75% better. I was relatively happy with my progress and my new job was better than my old. Not that great but still better. Around October I was working on a really stressful project doing long hours and I noticed my symptoms were deteriorating again. Maybe back down to 40% better. This freaked me out, seriously. Especially after all the progress I'd made over all that time, but I realized it was just my mind/body telling me to stop what I was doing as it was unhealthy.
This made me look again at what was out there as I'd become really focused on what I was doing. I noticed that many sites advertised something called Quercetin. I saw that the active ingredient was something called Quercetin. I popped down to my local pharmacy and picked up 120 tabs and thought I'll give it a go. to be honest I'm GLAD I did. It may be placebo or may not but I've found since taking one of those each morning it got me to my 95% stage. I now no longer feel the need to do internal trigger point therapy and just continue with my stretches and external massage.
I also decided to change jobs again and start contract work. I love my new job and my health is way better. My employers actually put a limit on my weekly hours at 40 hours per week to save them money and I find that works really well for me.
So to sum up, you CAN get better there are ways. It may take a long time it may not but there is ALWAYS hope. Hopefully this may help someone else out there and I know on my down days I'm gonna refer to this to remind me how far I've actually come. I love life now and am looking forward to what the future holds for me.
Good luck and be well
Steve
