UCPPS - Prostatitis, Interstitial Cystitis Forum

I was referred to this site from another man at the IC site. Based on my symptoms, it seems that should be here, but at this point I really don't know. This is my story thus far.

I have been dealing with this affliction since April 6, 2007.

For the last 2-3 years prior to this I frequently had to use the bathroom: maybe 8-10 times per day. I went to see my GP back in 2004 and he had me do some tests. Everything came back normal. From that point on until April, I just dealt with it as frequency was the only real symptom I had.

On April 6th, 2007 I had the urge to use the restroom after masturbating. Right after that I continued to have the urge to void. I experienced no pain, just the constant need to void and this feeling of my groin area of feeling raw, irritated and inflamed. Although I never considered this pain, when compared to what I have seen other people post, it is pain just a different kind. As my bladder filled, there was no real discernible increase in discomfort. I just made myself wait for at least two hours before I voided again.

Even though I was suffering, being a normal male, I masturbated a couple of more times and each time my symptoms got way worse. Also, orgasms were very unfullfilling. The only way I can describe them is that they didn't feel complete. Finally, I just swore sex off altogether

From April 6, 2007 I had intermittent symptoms all the way through the beginning of September, 2007 pretty much every day.

From the beginning of September until October 13, I was feeling just about normal. After not engaging in anything sexual for almost five months I masturbated again. The next day I began to have significant symptoms again, characterized by the constant need to void, a feeling of my groin area feeling raw, irritated and inflamed. After dealing with this so long, these are the levels I experience.

Level 1 - Tolerable. I have a constant urge to use the restroom, but I can wait for a couple of hours. When I sit the feeling is worse than when I stand. I have a vague feeling of irritation and rawness that comes and goes from my perineum to the base of my penis. Standing is helpful.
Level 2 - Barely tolerable. The urge to go is strong. I can make myself wait, but it's difficult. It can be difficult to concentrate. Its' much more when I'm setting down. There is a feeling of rawness, irritation and inflammation localized in my groin area and between my perineum and the base of my penis. Standing makes the symptoms abate a bit.
Level 3 - I get anxious and cry. I can't concentrate on anything other than my bladder. The urge to urinate is very strong. I feel panicked. There is a very strong feeling of rawness, irritation and inflammation in my groin area from my perineum to the base of my penis. It's much worse sitting down. Standing does little to abate symptoms.
Level 4 - This has only happened two times. I lay on the floor in a fetal position and think about death.

From October 13th to November 2nd I was experiencing Level 1 and Level 2 symptoms daily. I have not engaged in any sexual behavior since October 13th. and do not plan to in the foreseeable future.

From November 2nd to January 4, 2008 I was basically normal again. I only had two bad days in December during this entire time, both Level 2's.

On January 4th, I went out to eat and ate a little bit of green chilie with my food. When I got back to work, I voided and when I got back to my desk I had to go again. From that day until today, February 8th, I've been at a Level 1 & 2 on most days.

Orgasms aways trigger my symptoms. I have tried to explain this to my uros (I've seen 3) and they all tell me that it is impossible. However, I know it isn't and it's infuriating that nobody believes me.

The only foods that seem to trigger my problem are orange juice, pineapple juice, coffee and now I discovered, chilies. I can eat everything else unless I'm symptomatic when just about everything not on the IC food list affects me negatively.

My uro put me on Alavil. I'm also taking fish oil, MSM, marshmallow root, Aloe Verde, Cystoprotek, Bladder-Q and a few others. The Alavil seems to help. I have been eating mainly veggies, meat and beans. I have gone to see a PT who has experience working with men with this problem. She found a lot of exterior triggers, one which made me almost jump off the table, but she stated that my insides just seemed "tight." The sessions with her seemed to help, but I wonder if she really checked me out thoroughly enough.

I have been diagnosed with LUDE, then possibly IC, and then CPPS. Then I read somewhere that they are all pretty much the same thing. At this point I don't know what I have, I just know that I'm sick of it and I don't have any other doctors to see. As one uro stated, "Trying to figure out what you have is like trying to hold a cloud, we just don't know what's wrong and there is nothing else I can do for you."

Does anybody here have a significant increase in symptoms after sex of any form? The only thing I can think of is that my muscles way deep inside are really irritated and inflamed and the force of an orgasm causes them to constrict and increases my symptoms. Any suggestions, advice, would be appreciated. This is a hard thing to go through by yourself.

Actually you were dealing with it well before april of 07, with the 3 years of frequency and such. Perhaps other symptoms will be remembered if you reflect on years before that. The majority of men with discomfort seem to have problems after sex .

The concept that a PT found trigger points externally is a good sign. That you even found a PT given the puzzlement of your physicians was good. Food sensitivities (apparently wheat gluten a major one) aren't uncommon also.

--jjf

Actually, your symptom sounds quite typical for chronic prostatitis / chronic pelvic pain syndrome except you got more of an IC component. The raw/irritated feeling is my main issue except I urgency is very rare for me. If you read a bit here, everyone's symptom is a bit different and another thing to keep in mind is our symptom are always changing.

The good news is I don't see you follow any of the Stanford Protocal yet. Be sure to get a copy of the book, Headach In the Pelvis. The link for the book is on the site somewhere.

Hello Strobers and Welcome!! Glad you found the board and we're here to support, listen, and give feedback based on own experiences.

My journey started in Mid 2007 and I'm still on the path. Here are some things that I know and I would suggest as part of moving forward:

1) Remember that this is not a death sentence. Yes, it sucks and yes, it's unfortunate that this is what has been given with us to deal with. But - it can be done.

2) Get good rest - if you're not getting adequate sleep & rest, your body is in a compromised state.

3) Eat a healthy (if not IC friendly diet) - get rid of processed foods, sugars, saturated fats, etc.

4) Drink water as opposed to other beverages - especially caffeine - this was hard for me - but I'm getting there. Camomile tea can also help with relaxation.

5) Maintain a level of activity and fitness - walking and stretching are becoming good friends to me. Don't overdo it - but do something. Swimming can be beneficial.

6) Learn to manage stress and relax - very KEY!! A HEADACHE IN THE PELVIS will be helpful I found the STRESS MANAGEMENT AND RELAXATION workbook helpful as well as a relaxation CD. There are good stretching DVDS which can introduce you to YOGA. I also find hot baths w/ some Epsom salts can be helpful. The hot water relaxes the pelvic muscles.

7) Find a Dr. you like and trust and work with him. The Dr.s have many tricks up their sleeves, but you need to give them time. I agree that so much of IC, IBS, chronic prostatitis / chronic pelvic pain syndrome seems to have an inter-related component.

8) Once people start moving ahead they find they get better over time. You' ll notice waxing and waning. Don't panic - just keep doing the RIGHT things!! Also - you'll notice that there are many guys that posted here at one point and are now on their way

9) Don't give up - persistence is the key.

10) Find things that enrich your spirit - prayer, meditation, etc.

Take a look are you doing all of these things - then good job - keep it up. If not, consider adding them to your life - you might find that the next thing you add will get you that much closer to being well.

CHeers and Welcome mate!

Thanks you guys for the feedback and welcome. It's nice to know I'm not in the boat along with this thing.

I've noticed that many people have posted about this contraption that purchased at the IC site that aids in sitting. I was curious if those who use it, use it all the time not matter how they are feeling, or if you use it only when your symptomatic.

Also, what advise do you have for me regarding sex? As I posted before an orgasm triggers horrible flares that last three or four weeks. It's just not worth a few seconds of pleasure to go through two weeks of torture. I'm going to post this question in the event nobody is reading this thread any more.

Thanks.

What advise do you guys have regarding sex? As I posted before orgasms triggers horrible flares that last three or four weeks. It's just not worth a few seconds of pleasure to go through two or three weeks of torture. I not only can't have sexual release, I have to deal with the CPPS/IC at the same time; a real double whammy.

It seems for some people sex actually helps their symptoms, but not for me. I hope I don't have to spend the rest of my life sex less.

All though I can't stop the pinching burning symptom in the perineum, relaxing and falling to sleep after gets me out of trouble, for me now only sex at night (to sleep after) or any time in a hot bath can stop me feeling any pain on orgasm and just a mild ache for a day after

I notice the longer you go between orgasms the worst it is due to more semen release and more pumping. I find the more often I do it the less semen is there so less pumping pain

A lot of small pain is better than one big flare

I pretty much avoid any sexual activity these days. For some people it provides relief; but for others (myself included), it causes flares that make it just not worth it in the end. Plus, many people's conditions have been triggered by sex, suggesting that sex might even have long-term negative effects. I'm very risk-averse, though, so I'm way more cautious than most people about this. Most chronic prostatitis / chronic pelvic pain syndrome professionals will say that some sex is OK.

I went to see my 4th Uro today. I thought things would be different, but they weren't. I provided him with a short two page synopsis of what has been going on and like everyone else I've seen he couldn't be bothered to read it.

He told me basically the same thing as everyone else. I haven't had time to read your letter (six weeks isn't enough time?) Please put everything in your own words. After saying my part it was the usual well it could be this and it could be that. We don't know really. What really depressed me was that he wanted to do prostrate exam, when I knew it was an exercise in futility. I guess he needed to do something to get paid. Who knows.

He stated that he does not believe that PT can help anybody with IC/CPPS. He stated emphatically that the bladder causes the muscles to act up, not the other way around. I don't believe that at all. I believe that the muscles are the ones causing the bladder problems. If they weren't, then why would I have almost two months of remission? If it was only a bladder problem, wouldn't you think that it would continue?

He also completely discounted that orgasms cause me to flare. It's just common sense. If a person's inner muscles are all tight and bunched up, the force of an orgasm has to affect them in some way. He basically stated that it wasn't probable and he had never heard of that happening. I felt like telling him, listen, listen you dumbf%&ck. Listen to what I'm telling you. Why is it so hard for doctors to accept the fact that orgasms are my biggest trigger and what causes me to flare for weeks at a time? What is so difficult about that concept. There should be a law dictating that any urologist that practices has to read at least fifteen posts a day from the chronic prostatitis forum.

I will not longer spend my hard earned cash to see doctors. I have to learn to just depend on myself. I am going to continue to take my drugs and supplements, listen to my relaxation tapes, take a nap in the afternoon, eat my boring food, stretch, and take warm baths daily. Most of all I am not going to let this stupid disease/illness ruin my life. I may have something, but it does not have me.

FY CPPS

It's nice to hear some validation. There are plenty of guys who flare with an orgasm. I just can't believe I can't find a doctor that accepts the fact that it is possible. Why are they so closed minded? It just amazes me that a person can practice medicine says out loud that his patients know more about IC/CPPS than he does. Isn't that what doctors are supposed to know?

Uros are only way-stations on our journey. Pretty soon you have to wave them goodbye and move on.

YES, and considering that a prostatitis diagnosis is assigned at 8% of all urologists' visits, they really ought to know a lot about it. But they don't, most of them, and some know next to nothing. However, this does not mean you can ask for a refund or refuse to pay the bill! And it in no way detracts from their average incomes of US$320K (in 2007).

Urology Times wrote:Urologists .... command an average salary of $320,000, with the lowest end of the range being $250,000, and the highest, $375,000. The average urologist's salary from 2002 to 2003 was $277,000.

http://www.urologytimes.com/urologytime ... =&pageID=2

Some doctor's are very good, others are not. Yours seems to fall into the latter category as it is well known that orgasm can aggravate symptoms in some patients.

To be honest, you need to find one who's honest with you and is open to novel treatments and then stick with him or her. Don't waste your time bouncing from doctor to doctor looking for a magic bullet because I'm afraid you won't find it. chronic prostatitis / chronic pelvic pain syndrome is a syndrome that is different for everyone and you need to try a lot of things to find out what works for you. The good news is that you will most likely find something that alleviates your symptoms or cures you, it's just going to take time and effort to do so.

Strobers - what major metro area are you near? I agree if the Dr isn't doing it for you - find a new one. I am in Chicago and I was impressed with my UROs, plus I spoke with one in the New York area and he was fantastic too.

There are good docs, docs who are in touch with this. Take a deep breath and know that you don't have to settle for stupid Uros.

Hang in there - we're all here for you.