My long story! Looking for hope and advice!

[xflashjr]

Hey everyone,

My name Is Stephen and I have been lurking here for a while and this is my first post. I wanted to outline my history and see if anyone might see a pattern with my horrible symptoms and hopefully give me some hope.

I went to Italy in July of 2007. I was there for almost 2 weeks and after the initial culture shock I had a great time. Prior to going to Italy I was in top physical shape, I was 23 years old just graduated college 6'1 175 pounds and I played many sports and was quite active.

About half way through in Italy, I started to feel a straining type pain when I masturbated and had trouble maintaining a full erection. I always had a VERY high sex drive and had to masturbate at least once per day to control it. I could tell my erections were not as strong as they were a few days earlier. The pain was not bad yet but was there. I cut back on the masturbation and enjoyed the rest of my trip. The day before we went home we had a farewell dinner and I drank a bottle of wine (felt quite well!)

The next day on the long flight home my prostate was killing me. I was very agitated and was in a horrible mood because of it. I knew this pain quite well as when I went to Cancun in 2003 when I came home I also had this similiar pain. I went to see my urologist (had kidney stones in the past) and in 2003 he prescribed me Cipro and in 7-10 days I was good again.

I assumed this was a similar thing I must have caught while in another foreign country. Well I get back home and after a 2 weeks of taking saw palmetto to see if this was going away on its own I went to my urologist told him what was going on and pretty much asked for Cipro as it worked the last time I saw him.

I took Cipro for 2 weeks and saw him again with little improvement. I continued for 2 more weeks with very little improvement as well. He decided to switch me to levaquin and also gave me a very hard prostate massage to try and get some fluid out (could not get any).

The massage though did wonders and I was completely pain free for two days, my sex drive was back and I felt like a man again. Unfortunately the pain came back after two days and I continued on the levaquin. about 13 days into it the pain was still there and I got frustrated and stopped taking the levaquin (stupid idea)

I began a full bottle of Quercetin with no results, at this point I was beginning to become depressed. I lost my job and no longer had health insurance so going to a dr was out of the question. I began looking for other treatments and I tried some Chinese prostate medicine (no luck) and just pretty much stayed depressed. around November of 2007 I decided to try and take the rest of the levaquin that I had in my closet. I did not have much faith in it but I could not afford anything else.

After about 10 days the pain was gone. I did not feel 100% by any means and my sex drive was still at 0, but the actual pain I was feeling was not there. I took levaquin for 17 days and two days after I stopped taking it the pin was back. After doing research everyone was saying there was no way this could be bacteria still so I just assumed this was true even though the levaquin worked somewhat.

A month or so after this I began to have other symptoms. I was having horrible more pain in the same reason and was having horrible amounts of gas. My bowel movements were now very thing, pencil like, and I was having a whole string of gastro problems that definitely seemed related to these issues

During the summer of 2008 I was in a bad car wreck. A women totaled my car and I was in physical therapy for many months. During this time I was given anti-inflammatory drugs as well as a muscle relaxant. The anti inflammatory drugs gave me the first improvement I had in months. I noticed the greatest improvement after I would stop the drugs. For a day or two I would be pain free with 100% sex drive there but ultimately all symptoms would return.

After about 3 months of this I plateaued with improvement and decided I needed to get health insurance again and see about trying to cure this. After finding a good urologist this time we went through a whole battery of test.

over the course of about 8 months or so I :

was put on celebrex and uroxatral

multiple urine test (no form of bacteria but only did 2 day cultures)

Multiple DRE test where the prostate always felt to be slightly swollen.

testosterone test with a rating in the 500 range

semen test ( low sperm and amount) but no form of bacteria

and most recently did a sonogram. The test showed 2-3 VERY small stones but aso showed a swollen prostate. This obviously was not in my head.

the dr also recently did a rigorous prostate massage and even though the results were not as great as the first time I had one the relief was still there for a bout a week.

He has since given up on me and refered me to a new dr that I have yet to see but assume more of the same which has left me in paid for almost 2 years. I truly am at the breaking point right now and I need to see what other options I have. Here are my theories.

The fact that this happened all of a sudden while I was in another country I still think I picked up something. If not bacteria then something else such as fungal.

I do not think this is solely stress or pressure point oriented and before this I was perfectly healthy and this was not a gradual problem. There was a clear beginning to this. The fact that the levaquin did alleviate pain makes me believe that something was there that was being affected and it was not just the anti inflammatory side effects.

My last dr would not prescribe me levaquin even after I told him as he said no bacteria was found. I did not argue with him but It is still in the back of my head.

In January of this year I went on a cruise. 3 days before the cruise I took claritin every day and stopped the day before I left. The first 2 days on the cruise I was 100% pain free and was the first time I had good sex with my gf in months. the second half of the cruise the symptoms began to return. I have no idea what role if any claritin played in this but adds another piece to the puzzle.

My symptoms besides the pain seemed to not focus as much on having to urinate. I never get up in the middle of the night to go to the bathroom. I do have a weak stream most of the time or the stream will vary while I go but it does not seem like 100% the usual symptoms.


Conclusion:

At this point I am willing to spend ANY Amount of time and money to get well. I do not care what it takes but right now I am all over the place with where to start. Someone please help I am open to anything! My long time gf and I recently broke up and as much as I do not want to admit it a large part of it has to do with the fact that I am sick. Please help!

[webslave]

Get thee to Stanford.

[xflashjr]

Stanford as in the headache in the pelvis?

I own te book and have read it and nothing in it has seemed to work for me. I spent a long time working on it and no matter what I did the pain was there and continues to be there.

[cam_05]

Agree. If your willing to spend any amount of money as you say. At least get the book.

I'm in a very similiar situation to you, first massage brought me back to 100% it was brilliant. Second one helped but not as much. i wish i knew what i did now when this started. But you can't think like that i guess.

[webslave]

Stanford as in the headache in the pelvis? I own the book and have read it and nothing in it has seemed to work for me. I spent a long time working on it and no matter what I did the pain was there and continues to be there.

You are a classic neuromuscular case of chronic pelvic pain. Some of the key points:

• "prostate" massages helped you (actually these massages release trigger points in the levator ani insertions, which lie directly behind the prostate)
• daily masturbation (too much) followed by difficulty maintaining an erection and "straining pain" (neuromuscular) is a pathway into this disorder that we have seen before
• Cipro anti-inflammatory abilities are well-known
• Disturbed bowel movements and gas followed your overuse of antibiotics. Stop taking them.
• You are not infected (long cultures are a waste of time)

Again, if you have the money I can think of no better destination than Stanford.

[xflashjr]

I will find a way to get the money, I just want to keep all my options open. It just seems odd to me this happened ALL of a sudden without much gradual problems.

Keep the questions coming.

[carld]

You can read my starter list to help guide you to get going in some of our protocols....

Best

[Jay]

Hi there,

Your case sounds pretty typical of our members, in my opinion, and you share many symptoms which I have or once had. It's tempting to let infection get into your head, but they are not that hard to detect.

I would concur with the suggestion of trying Stanford, if you're willing to invest whatever you must. I would certainly be there in a heartbeat if it were financially possible for me. Try calling Doctor Wise and discussing your case with him. He's very friendly and will take a thorough listing of all that you're dealing with. There's no pressure to sign up for the clinic when you call, though he will give you an invitation to come, should he feel that you're a good candidate.

Best,

Jay

[xflashjr]

Ok please help explain this!

I went on my cruise in January and I seemed stuffed up so I took 24 hour claritin. I had no prior knowledge that a drug like claritin was not good for an enlarged prostate.

I stopped taking it right before my cruise and I was bummed because of the pain I was in and was hoping something would allow me to have a good time. All of a sudden the first two days of the cruise were phenomenal. I had no pain and my sex drive was great. After two days same thing just not as bad.

Well I keep notes of when I feel good so I can look for a common link. I noticed after I eat sometimes it feels like I have a lot of phlegm in my throat and I have to spit a lot. I began to feel like that now.

So at the beginning of this week I picked up 24 hour claritin and have been taking it once a day everyday. MY GOD I would say at least half of the pain and problems I have been having are gone. I have a steady solid stream now with no straining. 75% of my pain is GONE and my sex drive even though not great is actually pleasurable now.

Also the biggest thing is my bowel movements are almost completely back to normal! This happened almost immediately! No more pencil thin watery stools or feeling like I have to always go.

I am definitely onto something here but have no idea how or why this is working.

Any ideas?

[webslave]

The phlegm after food and change of symptoms with antihistamines says that you are one of the people who have food intolerance as a component of your pelvic pain. You would benefit from an elimination diet.

[tamdc]

CPPS symptoms wax and wane. Yours are obviously waning right now. Pills will not "cure" your condition, but may temporarily mask the pain. I don't understand the hesitancy to go to the Stanford clinic, given you have the money. At least call Dr. Wise. I personally saw Dr. Anderson about a year ago and he was the best doctor I have ever seen in my life, for any condition.

What's frustrating about chronic prostatitis / chronic pelvic pain syndrome is that the pain can feel like an infection. My symptoms certainly did. It was only after regular PT with a good therapist that I realized very clearly that it was pelvic tension causing my pain. Once I got my pelvic muscles into a more relaxed (normal) state, symptoms subsided almost completely -- and eventually, completely (though they do return from time to time).

You would be better off treating the cause of the problem, rather than taking Claritin for the rest of your life. Remember in HITP, Dr. Wise describes his treatment as the "slow fix". He's right about that, you have to be patient about the treatment.

[carld]

Good post..Spot on

[JTC1]

Also, note that your temporary "recovery" on cruise/vacation could be due to being less tense and distracted from thinking about CPPS. The only time I have been pain free for several consecutive days was this spring when I was on vacation. Would have been easy to assign this success to something tangible - like a drug, Negro Modelo, fresh mango juice, who knows...but in the end, it was because of two things:

1. I was up off my but and not sitting at my desk all day.
2. Feeling completely relaxed and not tensing my pelvic floor.

Just my $.02....

[xflashjr]

You would be better off treating the cause of the problem, rather than taking Claritin for the rest of your life. Remember in HITP, Dr. Wise describes his treatment as the "slow fix". He's right about that, you have to be patient about the treatment.

The deal is my pain NEVER Goes away. In the past two years maybe for a total of like 20 days tops the pain subsided. Most of that just recently.

If I had periods where the pain was gone and magically come back I would believe it!

I think my issue is definitely allergy related.

I have read the headache in the pelvis book twice now and have tried it for almost 6 months with little if not any results.

I also have multiple issues with IBS type symptoms as well. Pencil-thin stools are very common and when I feel well ALL symptoms go away.

I will continue to try and document.

[ryguyy26]

Hey xflashjr,
I just wanted to let you know that I am basically in the same boat as you man. I started with prostatitis after I graduated college last year and I haven’t been the same since. I now have zero sex drive and I used to masturbate constantly. My erections are weaker and so is my orgasm. I also get a throbbing pain in my prostate following ejaculation. Me and my gf broke up recently due to all the fighting we were having over my issues. I don’t have much advice for you as I’m still dealing with this myself but I just wanted to let you know that I’m going through exactly what you are going through.

I do want to know if this problem is affecting your social life? I used to be a drinker and out all the time with friends. In the past 8 months I have only gone out a handful of times and alcohol always hurts my prostate. The worst part is none of my friends understand what is going on and don’t get why I can’t go out or drink with them. So I feel like I am losing them. Are you having any of these problems too?