New Member Seeking Advice-Please Help

[33981926]

I want to start by saying that I am in awe and inspired with the members on this forum that have courageously dealt with Prostatits-CPPS- or BPS/IC for years! I suspect that I have CPPS, although it has only been a little over 3 months. My saga started on October 11, 2011 and my life has been turned upside down. It started with a slight tingle-burn on the tip of my penis that wouldn't go away and that would give me the urge to pee; I was told that I had nonspecific urethritis (urinalysis negative) and given a week of doxy and a rocephin shot. Didn't go away, went to a urologist and said that prostate was normal, but suspected nonbacterial prostatitis. He gave me a week of bactrim and told me to take hot baths. The hot baths did take the edge off, but it would wear off after a few hours. Went back to GP and while feeling around he suspected that I had epididymitis (urinalysis negative) because one of my testicles really hurt when squeezed in comparison with the other; he gave me two weeks of Cipro and told me to drink plenty of fluids (I started drinking water only-still do). That seemed to resolve the urge to go, so my tingle-burn became just a burn. However, the pain was still DAILY and seemed to fluctuate at times from hour-to-hour. Sometimes, it was just slight uncomfortableness and sometimes my penis felt like it was on fire. I went to a second urologist that found nothing (normal prostate secretion [although fluid caused urethra to burn for a few seconds], negative urinalysis, normal urine culture), but he gave me 10 days of Amoxicillin. It really started to become so preoccupying, especially because it was penile pain. I decided that I was going to stop taking antibiotics as they weren't resolving the problem.

I have read the 6th edition book of the Wise-Anderson Protocol and what they describe might be what I have. I have started doing the stretches in the book and trying to relax, as I have noticed that stress does make it worse. The daily pain has caused me to have anxiety and has depressed me to certain extent. I went to my GP and he gave me Valium and Paxil, an anti-depressant. I take the Valium (5 mg) when the pain is really bad and it helps reduce the pain and reduce my anxiety. I took 1 mg of Xanax for a week and it completely took my pain away. However, I stopped taking it as it is for anxiety attacks. I haven't taken the Paxil as I have read that a common side-effect is a low libido. My wife and I are trying to have a baby right now (no post-ejaculatory pain). I am going to ask my GP for Elavil. My thighs and butt cheeks (not perineum) have started to ache/burn. I am not sure if the daily stretching is causing this? My hips have popped for years (not painful), so I wonder if that is somehow related? I have also started to pay attention to my posture and have noticed how often I squeeze my butt cheeks.

I can't believe how much my life has changed in 3 months. I am mentally and physically exhausted of dealing with this and it has only been 3 months. I think I would cope better, if the pain was not DAILY. I haven't been able to identify a discernible pattern of what makes my penile pain go from slight to severe. Luckily, I don't wake up at night in pain. I always wake up in no pain and as the day goes on the pain tends to increase, eventually subsiding to a manageable level in the evening when I am laying down. I am under a lot of stress as I am in the final year of my PhD program, we are trying to have a baby, and I am looking for a job. Any thoughts would be greatly appreciated. It is comforting to know that I am not alone. God Bless.

[webslave]

I am under a lot of stress as I am in the final year of my PhD program, we are trying to have a baby, and I am looking for a job

That's the key. You're outside your comfort zone, and your body is telling you that. My response was to change my life, but others have been able to continue overachieving by using trigger point treatment, paying attention to relaxing the pelvis and relaxation sessions with special music (Dr Jeffrey Thompson's stuff is great, see link to Amazon in my signature), meditation, quercetin, etc.

[Nick]

I also suffer from tip of the penis pain which follows a similar pattern to yours, no pain first thing in the morning, pain building throughout the day then subsiding in the evening. I would say stress is a major factor here, you really need to find time for yourself and to just relax, not easy I know. I really struggled to understand paradoxical relaxation and have just bought a book on Mindfulness, I am really excited about this as people have had good results using Mindfulness and meditation in general.

Nick

[33981926]

Thanks for the quick replies. I suppose it could be stressed related, I'm just not convinced yet. But I also figure the Valium or Xanax wouldnt have taken the pain away if it was some sort of unknown infection. If all of this is related to stress and tension, it worries me as my wife and I are trying to have a baby. Any thoughts anyone? She has asked me if I want to delay it, I told her no. But as the daily pain continues I am having some second thoughts. She has been so patient already in waiting for me to finish my Phd program. We have been together 13 years.

I have been trying really hard not to focus on my pain when it comes and goes throughout the day, but it is hard. Most days I think about it all day long and think about how my life will be miserable if I have to live in daily pain. If it wasn't my penis I think I would be coping a lot better. Some days, when the pain is consistently low all day long I feel like I can still achieve all my dreams. Those moments tend to be more and more fleeting as the number of days with this pain continues.

Nick, how do you deal with the daily pain? Is the amp. medicine working yet? God Bless.

[Nick]

Yes, pain in the penis is not great, it is not easy to deal with, I think the best coping strategy is to have a plan of how to get better, whether you are planning time have a hot bath and do relaxation tapes, meditate, do some internal work or stretching having a plan can help you keep positive. Just know that at some point in the future you will beat this.

I have some better days and some evenings I can feel fairly free of discomfort and pain if I sit still or lie on the sofa. I find walking and being active the hardest, I get the sensation that my underwear is rubbing my penis and causing irritation. The amitriptyline has not helped as much I would have hoped, I have been taking it for about a month, it has possibly helped with some burning issues but I can't be sure. I am going to keep on taking it though as I have no real side effects from it. I would give it a try.

Tricky one about trying for a baby, just letting nature take its course is one option, have sex at the right time and see what happens, you have no post ejaculatory pain so that is good. I have 2 young children so this is an area I have not given much thought to.

Nick

[33981926]

Hey Nick,

Yes, I am starting to realize that coping with this problem should be looked at as a day-to-day issue vs. thinking about living with it forever or thinking about it possibly getting worse; as that only makes things worse mentally and physically. I have been doing the stretches from the Wise-Anderson "HITP" book nightly for a couple of weeks now. I also find most comfort also when I am lying down in the evening, whether on the couch or in bed. It does suck though because I did use to lift weights, so I have lost some muscle, but I have read that it tends to make things flare up more.

Like you I get that feeling that my tip rubs up against my boxers and causes it to start burning. But for me it comes and goes throughout the day and finally settles down when I have been laying down for a couple of hours in the evening. My doctor thinks that we should maybe do a cystoscopy, but I don't know? My urine stream is strong and I have never had any bladder pain, so I'm not sure. I'm scared that it might make things worse.

As far as the baby thing, I'm scared that I won't be a good father because of my constant pain and the uncertainty and fluctuation of symptoms of our condition. Other times I think that I can't let this condition rule my life and having a baby will put my life more in perspective.

[casperach]

The cysto is a good idea to rule out a stricture or anything serious but make sure they put you out for it. I stayed awake for it and it was the most painful experience of my life by far.

[Nick]

I remember my cystoscopy, it was so painful. They kept telling me to relax but I was tensing up and creating more pain. I had no problems after it, the first urination burnt a bit bit that was it. Yes, get yourself knocked out for it if you can.

Do you really think you would be a bad father because you are in pain? It may even make you a better father, the fact that you are thinking about how you will be as a father is to me a sign that you will take fatherhoood seriously. In any case, you may be well on the road to recovery or recovered in 9+ months time. Being a father will certainly be a huge distraction from your symptoms and will provide you with great pleasure. On the other side of the argument, if you are in pain the baby years my not be as enjoyable as they might have been.

[bobby]

My goodness... I remember my cystoscopy... horrible... painful urination the rest of the day... my gf held my hand everyime I had to go though... man I miss her... err its one of those dog days... feeling the pain of my first love... I'll let it go...

off topic... sorry.

[33981926]

Thanks for the replies. I do think that the cystoscopy would help rule anything else out and provide more evidence that this a pelvic issue and not a urological issue. I will be calling my urologist soon to discuss it.

Nick, in regards to being a father, I am just concerned about the potential of worsening pain that would end up putting me in bed. From what I have read on this forum, the symptoms can get worse over time, stay stable, minimize, or disappear for periods at a time. The uncertainty of it all is very worrisome to me. I know, I know...I shouldn't focus on what might happen and focus on what is happening now. I think that because the symptoms are relatively new, I haven't learned to accept them yet. I know that is not good for my mental stability.

So Nick, your kids help you cope?

Do any of you ever mention any of this to your friends? I have shared it with a couple of them, but they don't really get it. I guess only us suffers do. It sucks that we don't tend to meet any other suffers in person or at least those willing to admit that they have this condition. That is a real problem...if you look at IC, which as we know tends to be more of female condition, their networking is more intact. I base this on what I have seen on other online forums.

[Nick]

My kids do help me, they have no idea I am in discomfort/pain but they are a great distraction. My wife also really helps, when I am having a bad day she will help out by looking after the kids etc.

I have not told any friends, if I get asked why I am not running or cycling I blame it on an injury, I find it easier than mentioning that than my penis hurts

[33981926]

Hi Nick,

I think your right, I am going to live my life and go ahead with our plan to have a baby. My wife is very supportive of my current situation and I know that she will be there even if things were to get worse. Furthermore, I don't have post-ejaculatory pain, so that is a plus. Have you read the "Headache in the Pelvis Book" that is promoted on this forum? What are your thoughts?

[Nick]

Yes, I have read a headache in the pelvis, I only wish my doctor and urologist had read it as well It is an interesting book, lots of what is discussed makes sense to me. I only wish it was better written, the content is all there but it waffles on a bit in parts. But, I will forgive the writing style, it is a case of substance over style. If I had not read the book I may currently be taking Cipro and chasing after imaginary bacteria. Another book I read which is very concise and to the point is Heal Pelvic Pain by Amy Stein, but if you only buy one book, I think a headache in the pelvis is the one to get.

I hope your plan works out, do report back on any good news. I am good at dispensing advice on what is the best baby book to buy and whether to go for a strict routine or more relaxed approach to feeding

Nick

[elitynski]

Nick - it would be interesting to hear your thoughts on the MINDFULNESS book. What is the name / author?

[Nick]

Sorry, only just spotted this. The book I am reading is Mindfulness for Dummies by Shamash Alidina it is a good introduction to mindfulness and I am learning lots from it. I haven't seen any benefits yet, it is a technique that takes time to get the rewards from.