New Here...

[JT76]

Hey guys! Fromthe subject you can tell I am new to the board. You don't know what a relief it was when I stumbled across this web page. It was the first real time that I felt like there were other people out there going through things very similar to what I am. That was a huge relief in itself!

Anyway, my story is that Almost a month ago I woke up in the middle of the night and with a strong urgency to urinate and ahad a burning feeling in my penis. Didn't think much about it, got up went and took care of business, but that is where the normality ended. Eversince then it has been a wild emotional and pain rollarcoaster! I went to the doctor and he thought it was a urinary tract infection. He put me on Cipro and told me it should clear up in a couple of days. It didn't. In fact, it got worse. The main pain was coming from, at first, a burning sensation in the tip of my penis, then it changed to sharp pains.

I went back to him and he told me it was prostatitis and he gave me a prescrpition for doxycycline and began a series of prostate massages. This has worked pretty good for a while. I have had some side effects from the medicine and was feeling much better, so he told me to stop taking the medicine. But, I am still having pains in the tip of my penis. Is this normal for a while? I really don't feel that bad anywhere else, it is just the sensation and small pain right in that area.

Any thoughts? Ideas?

[webslave]

It's only called CP/CPPS after 6 months or so, so too early to say it's that. But it probably is. However, you have arrived early here, and with all the help you can give your body by perusing the site and using the advice therein, you may be able to minimize damage. Try quercetin as soon as you can. It doesn't work for everyone because of genetic differences, but you may be one of the lucky ones.

[JT76]

Thanks!

It is my prayer that it does not turn into CP/CPPS. I will try quercetin and see how that works.

[J Dimitrakov]

A good idea would be to take either a supplement (e.g. Algonot) or discuss it with your physician that you take pentosan polysulfate (Elmiron) to stop the damage. Please don't take this a s medical advise since I am not aware of your particular situation and can give you just general guidance. Best of lucK!

[JT76]

Thanks!

It is my prayer that it does not turn into CP/CPPS. I will try quercetin and see how that works.

[Carlton Higgins]

JT,

is the pain in the tip of your penis steady throughout the day? Or does it come and go? I have the same issue, and I find that it bothers me more at night than in the morning (some mornings I don't have any burning at all). Also, when I get up from sitting I feel a little burning in the tip.

I'm wondering if pressure on the prostate is causing a nervous inflamation to pass down into the penis. Even though my other symptoms (urgency/frequency) are under control thanks to Flomax, Quercetin, and no caffeine/alcohol, the burning at the tip has been really tough to shake. I've had it for a few weeks now.

[Ralph]

I'm new also. I just found this message board. Got here through the Interstitial Cystitis message board. Men do not handle their healthcare as proactively as women do. I can't believe there are more women with IC than men with prostatitis, yet the activity on the IC network is 10 times over any prostatitis web page. I was following the IC board because I couldn't get any help for my condition. I found some wonderful information from that site which has diminished my symptoms by 90%. Men need to take as active a role in their healthcare as women do. We should learn from their ability to organize and effect change the way they have with women's issues. They have a huge voice in how breast cancer is diagnosed and treated through their organizes efforts. Also, men don't like to talk about their illnesses, especially when it has to do with anything below the belly button. I believe in science and modern medicine, but some of the alternitive therapies I have tried via the IC network I think have worked for me. I thought at one time I had IC and not prostatitis since the symptoms are essentially identical. I'm a medical doctor, so I started myself on Elmiron. I've had great improvement although an occasional replase. I have been very disappointed at the lack of interest on the part of many other doctors, including urologists, with this problem. And I'm talking about docs who are personal friends of mine. They have told me to take anti inflammatories, ejaculate a lot and it will get better. Yea, right. I drink cornsilk tea, take vistril when needed and discovered a chinese doc in Philadelphia who makes her own medication for IC. I tried it and was amazed who much better I felt in less than a week. When I have a flare up, back on the meds I go. Like I said, I'm an American train doctor and believe in scientific evidence and not anecdotes, but I also like feeling better more. If standing on my head and rubbing marshmellows on my butt will help, I'll do it. This condition can dominate your life and, in fact, ruin it. A lot more work need to be done with this condition. Personally, I'm not sure IC and proststitis are two different diseases.

[webslave]

I'm a medical doctor, so I started myself on Elmiron. I've had great improvement although an occasional replase.

What dose and for how long?

I drink cornsilk tea, take vistril when needed

I've never heard of cornsilk tea. Could you tell us more? And do you find Vistaril (hydroxyzine) very useful? Does it sedate you?

a chinese doc in Philadelphia who makes her own medication for IC. I tried it and was amazed how much better I felt in less than a week.

I wonder what she uses?

Personally, I'm not sure IC and prostatitis are two different diseases.

Nor am I!

[Ralph]

I take Elmiron 100 mg three times a day. I've been tahing it now for over 6 monthes. It does not work immediately. The idea is to replenish the gag (glucosaminoglycan) layer of the bladder mucosa and prevent permeability of noxious substances in the urine. I'm sure you know this, but for those reading who may not. Cornsilk tea is tea made from the silk hairs of the corn cob. I steep it for 10 minutes and drink it with a little honey. I find it very soothing. I think Avita is the brand manufactor. As for the chinese medicine, they are located in Philadelphia 1-800-558-9833. They mainly practice accupunture although I've never done this. Dr. Kathy Whitmore from Graduate Hosp. in Phili has referred pts to her. Their name is Green Healing Center http://www.easternherb.com. The product is simply called "Cystitis" and comes in a pill form or tea. Get the pills, it's easier. I've also been there personally and met with them. Vistaril does help during a flare up. The draw back is sedation, therefore I take it only at night before bed. It can also cause some bladder outlet obstruction; another anti-cholinergic side affect. I take 0.4mg of Flomax q day. I think there is a component of bladder spasm with my condition and this is helped by the Vistaril and other anti-cholinergics and anti-histamines. Just make sure you can pee or else, boy is that uncomfortable. Check out the green healing center. It really helped me.

[webslave]

Thanks for an interesting posting.

[Hepcat]

Men do not handle their healthcare as proactively as women do. I can't believe there are more women with IC than men with prostatitis, yet the activity on the IC network is 10 times over any prostatitis web page. I was following the IC board because I couldn't get any help for my condition...Men need to take as active a role in their healthcare as women do. We should learn from their ability to organize and effect change the way they have with women's issues.

I couldn't agree more.

Especially in light of the suggestion that these boards may no longer be available in the new year (if the indications posted to the prostatitis newsgroup are true).

It's nice to hear pressure is mounting within the community itself, but distressing to note that the level of disinterest continues.

Kudo's to to yourself, the lurking docs and the active ones like Dr's D and S.

Hope the new foundation can find it's footing also. I've begun to wonder if we shouldn't treaty an alliance with the womens group in hopes of pooling towards a common goal. Thoughts?

[Ralph]

Very good idea. Women are just as interested in male problems as female problems because most of them are married to men. They really do care about their spouses and would be an advocate and voice for male health care issues. As for the message board going away after the first of the year, that's news to me and very distressing. I just found this place. We can't let that happen. Uros and other docs should put their heads together and apply pressure where it is needed to keep this from happening. Many more men read this posts that contribute to them and benifit by finding helpful information. This site also needs to be easier to find. I've been crusing the internet for 3 years about prostitits and just found this one today. Speak (or write) up.

[Carlton Higgins]

It is interesting that Doctors are now beginning to suspect that IC and CP are the "same" disease. For those of you that saw my other posting, my sister suffered greatly from IC for several years before getting it under control. Now I have similar symptoms (dignosed with Prostatitis but I suspect IC as well). A digital rectal exam didn't reveal anything unusual with the prostate, yet I have all the symptoms, such as urgency, frequency, and discomfort of the penis. A urinalysis was also negative, as it would be with IC.

[J Dimitrakov]

It is interesting that Doctors are now beginning to suspect that IC and CP are the "same" disease. For those of you that saw my other posting, my sister suffered greatly from IC for several years before getting it under control. Now I have similar symptoms (dignosed with Prostatitis but I suspect IC as well). A digital rectal exam didn't reveal anything unusual with the prostate, yet I have all the symptoms, such as urgency, frequency, and discomfort of the penis. A urinalysis was also negative, as it would be with IC.

And the thing is, that women with IC, just like men with CPPS, can have leukocytes in the urine from time to time (like men with chronic prostatitis / chronic pelvic pain syndrome who have increased numbers of WBCs in the EPS)

[JT76]

Well, I started any accredited quercetin product today. I have been putting it off since I have been sick for the past couple of days. (I have had a stomach bug or the flu bug) I have been been having a slight increase in the uncomfortableness and pain today. But, I have faith that will pass quickly and the any accredited quercetin product will help. I will keep everybody informed on how things are going.

I do have a question...has anyone had pain or pressure around the belly button area with this? Is that part of the area affected? Just curious. I can't figure out if it is from the stomach bug or the prostatitis.