Before describing my situation, I should also mention that since English is not my first language, a few language errors may occur in my posts. Just let me know if there’s something you want me to explain better. But hopefully, there shouldn’t be too many mistakes in my posts. In this post, I distinguish between two types of doctors: 1) “urologist” (you know what that is) 2) “doctor (non-urologist)” (the type of doctor you initially see and whom you consult with non specialist issues. I’m not sure if this type of doctor is called “family doctor” or “general practitioner” in English).
I will share my story below. First off, I want to list my current symptoms:
- Some sort of blockage of the semen. It’s not totally blocked, but to a great extent. The amount of semen is greatly reduced.
- Erectile problems/poor erection. It feels like something prevents the blood flow to the penis. Also reduced orgasms.
- Some irritation/an uncomfortable feeling inside the urethra. Also some pain/irritation in the perineum and the area around the genitals. It certainly feels like an infection or inflammation.
- Sometimes light pain in the left testicle (but never in the right testicle).
- Some pain in the pelvic floor (front and back). The pain is not there all the time. What usually causes it to flare up is physical activity (walking too much or running). However, even when the pain is not present, I often still have a vague feeling in the front that there something in there (maybe some infection, inflammation or tension).
- Muscles in the penis are often tense. The penis is often in a state similar to the state it is in when it is exposed to cold.
- Frequent urination. This bothers me to some extent, but it isn’t a major problem. I don’t wake up in the night having to pee, for instance.
- Chronic headache. This can be quite bad. The intensity of the headache is not the same throughout the day. It flares up and then diminishes. Aspirin helps a bit.
- Chronic fatigue. Also quite bad. Like the headache, it flares up and then diminishes.
- An unpleasant warm feeling in my body that flares up at different times during the day – often at the same time as the fatigue and headache.
- Sleep disorder. At the moment, my biggest problem is falling asleep at night. I don’t feel sleepy in the evening the way I used to. It is therefore a struggle to fall asleep at the same time at night. I constantly fall asleep a bit later at night and wake up a bit later the next day.
- Catch colds more often than I used to.
- Bowel problems. Excrement comes out in small pieces. And furthermore: the portions are also smaller. This means that whereas I used to empty everything at once every day, I now have to go 3-4 times per day. I also have some trouble passing gas.
- Psychological problems. It’s probably depression and/or anxiety. During bad periods, I can have panic attacks. I don’t work. I am mostly at home. I don’t have much contact with other people. I haven’t seen my family for a long time. But I do keep close contact with my mother. She helps me with cleaning, sometimes cooking, talking to doctors etc.
To sum up: Unlike other patients with CP/CPPS, pain and frequent urination are not major problems to me. Both things do bother me to some extent, but they aren’t major problems. The biggest problems are: 1) blockage of semen 2) erectile dysfunction/sexual dysfunction 3) the feeling that it’s infected/inflamed 4) fatigue and headache 5) and then psychological problems of course.
Treatment so far:
- Ibuprofen. Had no effect.
- Alpha blockers. It improves urination and relaxes the muscles in the penis so that it isn’t in the state as if it has been exposed to cold. It also makes it easier to pass excrement and gas. However, the effect is overall unsatisfying since it doesn’t remove infection/inflammation, remove the blockage of semen, reduce the pain or improve sexual dysfunction. It also has a serious side effect: Dry ejaculation.
- Cialis. Unlike alpha blockers, it doesn’t cause dry ejaculations. Otherwise, the effect is somewhat similar to alpha blockers. But I do feel that there is a difference. It feels like alpha blockers shrink the prostate or something else in there, whereas Cialis increases the blood flow. This effect of alpha blockers seems slightly better than Cialis.
- Antibiotics three times. It has responded very differently to these treatments. Below I will describe my story and how it has responded to antibiotics:
The first time I got antibiotics was at own doctor (non-urologist). I got five days. This seemed to relieve the pain in the pelvic floor a bit but not a lot. After a couple of weeks, I came back and got another five days. This didn’t help and the symptoms were back to normal. I don’t know which antibiotics it was. It might have been tetracycline.
The second time I got antibiotics was at the urologist. She gave me two weeks of Cipro. The response was quite dramatic. It basically caused a change in the nature of the condition. First, the pain in the pelvic floor completely disappeared. But I could now feel a light tingling feeling above my left testicle. This feeling was there for perhaps less than a week. One day this thing that caused the light tingling feeling dumped into my left testicle and caused quite severe pain in my left testicle (it was not constant severe pain but a pain that would flare up). The severe pain in my left testicle lasted for about two weeks and then started to diminish. Instead it was now entering into in the area around the prostate and into the urethra. This is when the blockage of semen began. I should point out that it took one-two years after I had gotten Cipro before the pain in the pelvic gradually started to come back. Today, the pain in the pelvic is still not as strong as it was in the beginning. So two weeks of Cipro basically changed the nature of the condition, and it seems as if something is floating around in there.
The third time I got antibiotics was at another urologist. He gave me tetracycline for four weeks. It didn’t respond to this at all. This urologist made a mistake. We had actually agreed that I should try the same antibiotics that I got the second time because it had responded to it. Only later on, I found out that I had gotten Cipro the second time and that he had given me tetracycline. I probably got tetracycline the first time and he probably confused the two.
Examinations:
- I had my bladder checked twice.
- They did different scans of the prostate, testicles etc.
- Been tested for well known STDs like Chlamydia, Gonorrhea, Aids/HIV, Herpes etc. At my first visit at the urologist, they didn’t want to test for Mycoplasma and Trichomoniasis. I was told that there was no reason to do that because I had not been with a prostitute or a foreign woman (this is true. I didn’t get it from a prostitute or a foreign woman). However, they eventually agreed to test for Mycoplasma and Trichomoniasis. But I am not sure if I have been tested for Ureaplasma. It doesn’t appear so in my health files.
All the doctors (non-urologists) I have had throughout the years also didn’t seem to know much about CP/CPPS. Even the urologists did not seem to be fully updated on the latest knowledge. For instance, no one told me that CP/CPPS can cause headache, fatigue and bowel problems. The information given about CP/CPPS by the public health services in my country is incomplete and in some cases wrong. On their website, they don’t mention that CP/CPPS can cause sexual dysfunction, CFS, IBS, Fibro and psychological problems. They even state that CP/CPPS usually doesn’t affect quality of life. I am kind of shocked and frustrated about their lack of knowledge on CP/CPPS, especially because the health care system in my country is often mentioned as one of the best in the world. That’s certainly not true when it comes to CP/CPPS.
So right now, I am waiting to see an urologist for the fourth time. Before I go, I want to gather information and prepare because the three previous urologists that I saw did not handle it well.
I would like to hear your comments in general. But I also have some specific questions.
- It responded to Cipro. Two weeks of Cipro cleared all the pain in the pelvic and instead changed the nature of the condition. What do you think it is? What was that thing that dumped into my left testicle? I can see that people in this forum generally don’t believe in the infection theory. But in my case, it does seem like some kind of infection.
- A lot of examinations have already been done. I cannot think of any other examinations that need to be done. But I do want to rule out infection conclusively. I definitely need to be tested for Ureaplasma. I also read that there are more strains of Mycoplasma and Trichomoniasis, and I am not sure if they have searched for all of the different strains. Does someone have a list of infections that I should be tested for?
- They haven’t done the 3 glass test to rule out bacterial prostatitis. But from what I have read, patients with bacterial prostatitis have symptoms that are different from mine. Should I still ask to have the 3 glass test done?
- Alpha blockers caused dry ejaculations in me. Is this harmful? I was taking a brand called: Tamsulosin Teva. Is it possible that other brands of alpha blockers would not cause dry ejaculations? Although Alpha blockers won’t solve my problem, I am still wondering if they could be useful in combination with something else.
- Do you know if there is any way to get rid of the blockage of semen? The last urologist I talked to didn’t seem to believe that there was a blockage of semen. When I told him about it, he just told me not to masturbate all the time. Very confusing reply. I don’t do that.
- I am currently taking antidepressants to deal with the anxiety and depression. I am taking this brand: mirtazapin. I take one pill per day. It seems to help a bit, but not a lot. Do you think that this is safe to take for longer periods?
Avoid urologists from now on.
