I am 26 years old and suffer with CPPS since January this year. After reading a lot about possible treatments, trying a lot of these treatments and trying to arrange with this new situation, I am now very depressed because no practicable treatment really helps me. I read a lot of your stories, trys and successes and hope that maybe somebody have a hint what I can do to get back some quality of life. Sorry for my possibly bad English!
SYMPTOMS:
My symptoms start in January with testicular pain on the right side. In the first weeks it was nearly constant. Now it is almost exclusively during and after exercises (running, swimming, lots of gym exercises) or sex. After one week, there comes additionally a perineal pain, which is located most of the time in the middle of the perineum but sometimes it goes to the direction of the rectum. This sort of pain is always triggered by sitting – it already comes up after sitting a few minutes. Sometimes it is also triggered by standing a long time or walking too much. It never comes when I lay down. Since March there comes additionally a pain in the penis. Sometimes it is a very high sensitivity of the glans. Sometimes it feels more like muscle soreness in the penis. This sort of pain usually (but not always) comes up after ejaculation and sometimes also after exercises. I have no problems with urinary frequency or pain.
TREATMENTS:
Basically, I am a pragmatic guy, who had learned to be ready for compromises. The reason for that is that I have managed to get along with an other chronic disease a few years ago, which taught me to live in a healthy way. I have a very very sensitive stomach which cannot treat by drugs and had to find a way to live with it. It takes 5 years, but now I have nearly no pain with it when I pay attention in my daily routine. I changed my nutrition, did lots of sports (which became a lovely hobby) and did progressive muscle relaxation. With this experience and self-confidence I start to search some useful treatments for CPPS. Here is a list:
physical therapy
Physical therapist: external and internal search for trigger points
result: no trigger points found, no effect on the pain/ sensitivity
Stanford/Wise-Anderson Protocol
Read a headache in the pelvis and did relaxation and stretching, but didn't try self-massage because there were found no trigger points
result: no effect on the pain/ sensitivity
sitting arrangement
- take a pillow or donout to sit
result: pillow makes sitting a little bit less uncomfortable, but it’s still triggers and increases pain after short time; donout doesn’t really helps me, sometimes it shifts the pain to the buttocks
- avoid sitting as much as possible and avoid standing for a long time
result: significantly less perineal pain
- took complete break of exercises and ejaculation over 4 weeks, then try out different types of exercises and ejaculate about two times a week
result of ejaculation: two times a week is a good compromise, but still not tried real and longer sex again, only masturbation
result of exercises: tried walking, running, crosstrainer, swimming, inline skating, volleyball, exercises with light weights but nothing really works good – now I try to get some fitness, balance and endorphines from standing in front of a handbike ergometer (thanks to this forum!), but in the long run it is really unsatisfying if there only works the handbike.
- avoid exercises except handbike and some back exercises
result: significantly less testicular and penis pain
Tried gluten diet (and anyway I don’t use coffee, alcohol and tobacco for years)
result: no effect
heat
Take hot bath and sauna
result: sauna is good for relaxation, but the heat does not really influence my pain
drugs
- took pregabalin/Lyrica 50mg
result: very good effect on my perineal pain, sitting was pain-free - it was like a miracle BUT I had strongly stomach pain after 12 hours taking the pill
- took metamizole
result: no effect on CPPS-pain BUT strongly stomach pain after a few hours taking the drops
Attendant psychotherapy (still going there) – but I don’t think there are any psychological problems, it is only very incriminating to find no effective treatment.
result (so far): no effect
So as I said I'm very depressed because no practicable treatment really helps me. Without treatment this sum of symptoms and sensitivities takes my air to breathe. I cannot do my usual work in the office respectively my pain increase when I do. I cannot participate on lots of social-activities or hobbies in my freetime because they contain long sitting, long standing or sport activities and that trigger or increase my pain. And I cannot really do sports except of handbike and some back exercises. Before this condition I loved to do running and play some ball games - it was an important part of my life. Now I feel like forced to do nothing (avoid sitting, avoid exercises, avoid long standing) except little walks and wait until the day is over again, so I can lay down and enjoy my night before the next day starts.
I really enjoyed the effect of the pregabaline, which made normal sitting possible again. It would be a huge step for me, if a normal daily routine were possible without significantly increasing the pain. But I fear that my stomach is too sensitive for drugs and I don’t want to change CPPS-pain against stomach-pain.
I already ordered any accredited quercetin product to try it.
I also will try Elavil (amitriptyline) but I fear that my stomach is too sensitive for it.
QUESTIONS:
What can I do to get back some life quality?
I am very grateful for every hint because I just do not know any more.
Do you think in my case it would be a good idea to visit the Wise-Anderson-Clinic for the 6-days-treatment (although there weren't found any trigger points by my physical therapist in Germany, I have no problems with pain of urinary or frequency, there are no effects during or after bowel movement and heat has no effect)? I would do everything to get back into life (especially be able to sit), so I would travel around the world to that guy, who possibly can help me. I also read of the pelvic pain clinic in the Netherlands (f-act by Fetske Hogen Esch), which would be much closer to me. But because I have the feeling that my case is very difficult to treat, it maybe would be a better choice to go to the „real experts“. What do you think? Is it recommendable to go to f-act or wise/anderson-treatment in my case or should I better try other things?
Is it a clue, that pregabalin really helps me in my pelvic pain? I think it shows at least that my pain comes from the nerves (and/or muscles?) and not from the prostate. But does this have any consequences on the treatment?
How do you spend your day without much sitting? I try to decrease sitting time as much as possible. It is good for my pain-level but it makes me insane. Actually, I even did a lot of sitting compensation before CPPS comes over me. I periodically stand up from sitting, I walk a lot (mostly about 3-4 miles a day),… But there is nevertheless needed a great sitting-capacity to eat your meals in calm, to meet some friends to talk/play games/watch movies/go to the restaurant, to calm down from walking, to work on my office job. I don’t know how to avoid this sitting times without spending this times laying down in bed. How do you manage it in your daily routine? Do you lay down during the day?
Thank you so much, I am so grateful for every hint!
All the best from hopewalker
