The irritation in urethra, a bit lower than the head of my penis, seems to be non-stopping and ongoing. It is really bad in the morning, but calms down during the day; however, it is just horrifying when night falls, since the pain and pressure makes me feel like i'm peeing myself constantly, and the general irritation pervents me from getting more than 3 hrs of sleep/night (i can only fall asleep around 4am once i'm dead-tired and i'll be sleeping in 2minutes or so) and i end up being a walking zombie during the day. This disease is really tearing me apart at the moment, and the worst part is that the doctors don't seem to understand it. I don't get pain while peeing, it actually relieves when peeing, but it always comes back immediately after i'm done.
The doctors say that there's probably nothing actually wrong with me and order me some irrelevant pills that don't do sh*t, or even order me to "Sit in a warm bath for 30minutes a day". I don't even have a bathtub! Sometimes they even claim that it's all in my head, and my parents are also getting tired of it and suspecting that i'm not actually in pain. I'm finally going to an actual urologist, but reading this thread it seems like it won't be too helpful, and the urologists will also just overlook it and pass it off as something mild. But this pain is horrible! I want to be able to sleep again and enjoy my life without a constant pain in my penis. At the moment i suspect that it's either Urethritis or a kidney stone that happens to be in my urethra, but apart from that, i have no idea what's happening and i'm desperate. I always try to keep an eye on the stuff that i eat during the pain cycles, but i don't really get a chance to test out if some food is causing the problem since the pain may persist for a whole 2 weeks before going away, and at that point i'd rather cut my penis off than go through that again.
Sorry for the profanityes and maybe bad english, english isn't my 1st language but Finnish people and doctors don't seem to even know the existence of this problem. It feels a lot better to know that this is a real condition, but a lot of you seem to suspect it's because of non-protected sex. I have not had sex so that's not it. Does anyone have an answer to this problem? Has a cystoscopy given any more info about this disease?
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I went to the infectious disease doctor. He tested me for Mycoplasma and Ureaplasma. I just got the results back today, and they are both NEGATIVE.
I have a prescription for Fluconazole, since basically the only thing I havent been treated for is fungus. Going to fill that today and hope for the best.
Heres where it gets interesting. I have been in contact with the lady who I presume to have got it from. She has since started a new relationship with a new guy who is not experiencing ANY symptons. Neither is she. She got all standard STD testing done after I first told her I was having problems.
Truley at a loss for what to do next. The Dr. did state that he thinks I did get something that we currently don't understand. He said he's sure in 50 years we'll understand this all a lot better. Not very comforting.
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How many of you are HLA-B27 positive? It is a gene prevalent in Scandinavian DNA, as well as other populations, which makes one susceptible to developing Reactive Arthritis or Reiter's Syndrome as a result of infections. It can cause problems in your autoimmune response and cause your body to attack itself and become inflamed. I am curious if there's a correlation or a predisposition for people who carry these genetics to this mystery malady from which we all suffer.
RedMeatusMan is right in that there will not be any progress made or productive research done into this until the pool of sufferers coheres and presents a unified front to the medical establishment. What if every person who read this post, and is desperate for relief, printed up this thread and shoved it into the faces of disbelieving uros, who feel associating these symptoms with an oral encounter is ridiculous? What if a few of us with the vision and wherewithal formed a blog/association specifically for this problem that was able to prod uros and other doctors into taking us seriously and devoting time and resources to finding a solution?
I know my quality of life has been severely impacted and I am not ready to just accept this. It is up to us to take our healing into our own hands and realize no one is currently able to help us. The responsibility to gain understanding and hopefully a treatment to this rests solely upon the shoulders of those who are affected by it.
Medical science has come a long way, and perhaps the fact we contracted this is in reality all our collective blessing in disguise, in that it is our way to help posterity to never have to deal with this misery in the dark like we have.
I believe in the tenacity of the human spirit to overcome even the largest struggles, even these strange unpleasant sensations that we all have, at some point or another, begged a higher power to take from us. It's time we become our higher powers and do everything in our ability to see that we are released from suffering and healed.
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I am HLA-B27 negative.
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