I've been able to have a good life for the past 1½ to 2+ years with this condition and things seems to be under control. I just wanted to briefly share my story and give some tips to other sufferers here.
I am 31 now, my issues started when I was 16. Initial symptoms were pain in urethra during erection and after ejaculation for a day. After a year I got some pain in my left testicle, went to ER and they said probably an infection, took some antibiotics and I got better. Post ejaculation pains were slightly worse after this.
I started antidepressants for anxiety in 2006 and my pain issues were brought down to bare minimum of just feeling a pain in urethra and tip of penis after ejaculations, for a day.
In 2013, I quit my antidepressants, went through an extremely tough time psychologically which lasted 15 months, (potentially withdrawal effects after 7 years use of various antidepressants).. 8 months through the withdrawal I had sex with multiple women in a short period of time. Shortly after I noticed that the pain in the penis after ejaculation had increased somewhat.
Fast forward a month, following an ejaculation, I started getting a very sore urethra, pain in perineum, lower back pain, what felt as pain in perineum, pain in rectum after defecation, pain during/after urination, etc....... No Insurance, no proper healthcare plan, no help from doctors... Meanwhile suffering from really bad psychological pains, and a job, so you can imagine "HELLL"
This problem basically changed my life since it appeared, it disabled me in reaching many of my goals and been a big pain alongside my career and like everyone else has given me so much grief and pain and suffering that I wouldn't wish it on anyone.
The journey in past 7 years was very bumpy, with periods when it would subside for few months and for no apparent reason and then reappear again for no reason I could understand. But trial and error after 7 years had given me some indicator of what is good/bad for me.
Things I have done
- swept through the internet, reading through forums like this, reading research papers, etc...
- seen many doctors in various countries, (too many urologists, GI doctors, infections disease doctors, psychiatrists, therapist, internal physiotherapists, etc....)
- lots of different tests (blood tests, cystoscopy, MRIs, STD tests, tests for infections, fingers in my ass
, etc......) - months after months of antibiotics (my record 1+ year)
- pain meds
- lots of different supplements
- Etc.... Etc......
- Be sure to get a pre/post prostate massage urine test for infections, I guess if these are negative especially if it has been a long time since you had taken antibiotics, the infection mystery should be rolled out and STOP taking antibiotics. Some urologists follow the common practice of associating everything to an existing infection, which may not be correct. I think in some cases the problem may have been caused by an infection that caused some problems but is non-existent now. But there are many other causes than just an infection that can potentially cause this CPPS or prostatitis issue. I am not a doctor but I guess a good course of something strong as Cipro would be enough at start when these issues appear, after that if no infections are seen, after this NO more long term antibiotics!!! As longterm use of them will give you years of gut dysbiosis that can make this syndrome even worst and give you other griefs (as in my own case)
- Read the "A headache in Pelvis" book, if you're in pain and can't concentrate, get the audiobook. The book really invites people to join their program which is pretty expensive but I think it really gives you a good view of the other causes and can build some reassurance that this is not horrible thing that you could have it all your life constantly. It's mind opening, especially if you're so worried about an infection and all these craziness people are advocating about direct injections etc....
- Pain in lower back or perineum is usually associated with my musculoskeletal system and how I treat it. I have found that lots of seats and beds slowly start this problem. I think seating and beds are a big factor in this and can change things dramatically. You need to trial out things for a good while to know for yourself. My tips (seating: try comfy sofas, bedding: hard surfaces)
- Pain in rectum, post defecation pain: its totally related to what I eat, there are foods that cause this, if I avoid them, I never get this
- Pain in lower abdomen, upper abdomen, over bladder. This is food and digestion related, need to look after what you eat.
- Pain and soreness in urethra: drinking or eating acidy drinks/foods, related to ejaculation and muscles responsible for ejaculation
- We discussed antibiotics already
- Antidepressants: I did not use this since my issue had started as I think they impacted my life badly when I was taking them and don't want to go down that line again. But I think in some they could help. A short term trial might seem to be a help to some, there are lots of different types ranging from SSRIs, SNRIs, tricyclic antidepressants etc... If you go to a doctor, most likely they will offer tricyclic ADs as they good with pain but can cause a lot of tiredness issues which might disturb life in some. My recommendation is that in some that are healthy and this is bothering them allot, a short term (few months) therapy of one of this might be of help but do your research, as for some they can give you bad side effects and for some it will be hard to quit them. If you take them, take them for short period and be with a good psychiatrist that will aid you to come off them after sometime. I don't think it will be a good idea to be on these for years as you can form dependency. Some newer forms won't cause dependency but require trialling to see if they help with the condition
- Benzos: there are some posts in this forum about having "benzo weekends", I personally never done it, and have taken benzos just once, but its worth a try but don't over do it, as its very easy to form dependency on these
- Pain killers: if your body tolerates and helps, do use things like paracetamol and ibuprofen occasionally, I found taking them at night is good. I'm quite scared of stronger pain killers so I never took them, I guess you can use them with caution too
- I found this to give me a lot of pain as it made some of the muscles very tender and susceptible to more pain. Potentially I was in most pain in past 7 years after doing the internal therapy. Probably, I just had a bad therapist who stuck needles in places she wasn't suppose to
- if you decide to do this, probably I would do it after I have done the external stretches a lot and with internal I would start very slowly and easily
This is the key for me and from what I have read in these forums from people, I have a believe that diet and digestion has a very big rule in all of these issues. This is a very big topic and I think everyone should consider doing an elimination diet first thing and get their diet under control before they do anything else.
- remove sugar
- trial with going gluten free
- take only low histamine and low FODMAP foods
- eliminate eat outs cook for yourself
- cut processed foods
- no acidy foods
- eliminate your herbs, stick only with the good old salt
- introduce one type of a meat at a time
- consider investing in a good water filter if you're using tap water
- trial with various bottled waters
- Vit D < very important, low levels in this can cause pains, can potentially help a lot if your levels are low
- Quercetin, I have seen some help from this, I personally think the help from this comes from the digestive enzymes that in this product
- reduce your stress levels, it doesn't help
- keep your junk warm, in winter wear really warm johns under your trousers, cold air to the junk is your enemy in winter,
- if your using long travels using public transport, consider living closer to work in winters to cut the amount of time your in the cold
- cold-humid climate is your enemy
