UCPPS - Prostatitis, Interstitial Cystitis Forum

Have you been doing the stretches that are mentioned in the book? Those are quite important. Also have you made an appointment with Angela yet? I'm glad to hear the medication and supplements are helping but that's only part of the treatment.

I took Rapaflo for a month, as an experiment, after my last visit to my Urologist. I thought it worked pretty well. I was able to sit at times without discomfort or a cushion. Now I didn't care for the congestion or the retro grade ejaculation. I need to call my Uroloigist and consult with him about my "findings". I would assume he would write a script for me if I ask.

I didn't take Rapaflo and Quercetin at the same time. I wanted to get a true indication of how the Rapaflo worked without any other herbs or medicine. I think I have 1 left. Maybe I will try them together.

Bobby not yet, I am considering going to the Protocol in January. I have a lot of personal issues right now which are kind of keeping me in check in my hometown. As soon as all that is gone i'm going to get straight to Standford.

skypro wrote:I didn't take Rapaflo and Quercetin at the same time. I wanted to get a true indication of how the Rapaflo worked without any other herbs or medicine. I think I have 1 left. Maybe I will try them together.

I don't think 1 day will work. I've been taking Rapaflo for close to 3 months now (With Elavil), and although its so much better with the meds, I must say that I never completely said to myself "wow.. I REALLY feel good right now", and I notice there isn't as much tension, burning, soreness. But now that I started with the 2 . Any accredited quercetin product and 2 any accredited quercetin product straight in the morning, I have to say this is what I feel:

Scale 1 - 10 (for me, and relative to this condition of course with 10 being a very bad flareup, and almost impossible to sit)
---------------

Consumption: No Medication, No Supplements
Result: Tight rectal pain, very very tight, burning rectum, soreness in one side of the testicles, tingling in my penis, tingling on my inner thighs, sometimes itching, very hard to sit, depressed, anti-social.
Pain Level: 10

Consumption: Hytrin, 1mg, 3mg, 5mg, 10mg (every week I went up I believe)
Added: A doughnut
Result: Very slightly helped with tightness in rectal pain, helped very effectively mostly for tingling sensations, itching,
Side Effect: I started to get bad headaches, I was forced to stop. Later to be prescribed Elavil.
Pain Level: 7

At this point since I stopped the Hytrin, My Dr gave me Elavil, however, like most of use we googled what it is and found out its an "anti-depressant" - so I decided that "i'm not depressed, I don't want to take this, I'm going to fight this". I went back to taking no medication.

3 months go by.... Pain level back to 9 now, I return to my Dr.

Consumption: 8mg Rapalfo, 10mg Elvil (before bed)
Result: Helped tremendously with all my symptoms, helped with sitting down, helped with testicular pain. However, I still do have flare ups, especially after a bowel movement, and have days where I am burning back to a pain level of 8
Side Effect: Impossible to wake up in the morning, Elavil makes you tired, very tired. Rapaflo has 1 minute side effect (unless you are actively trying to have kids) it has retrograde ejaculation, which just basically means that when you have an orgasm nothing will come out. (Not to worry there is no harm, and when you stop taking the pill you will be back to normal in 1 day).
Pain Level: 4

I did this for about 2-3 months now.. So it's like good day bad day on and off.

Last week I tried something different.
Consumption: 8mg Rapaflo, 10mg Elavil (at bedtime) 2 Quercetin, 2 any accredited quercetin product (empty stomach in the morning, at 30 minutes before eating breakfast)
Added: A doughnut
Result: The only symptom I have is I very mild, "weak" tension in my rectum, no burning, no stinging, even after bowel movement, no testicular pain. I am able to sit comfortably and it feels amazing. This is why I have added the doughnut, it is helping me pinpoint exactly the location of the pain, since it is so mild, and dull, weak, with no radiating pain, I center that area exactly inside the doughnut hole, making sure I'm sitting directly over that circle, also stretching my butt cheeks so that the rectum stretches out, before I sit.
Side Effects: Still having issues with waking up in the morning, I decided that the Elavil after a while won't affect you after you take it, but more when you wake up. Therefore, I am going to experiment taking the Elavil early night, around 6 or 7.
Pain Level: 1-2

So far it was been 9 days, with pain level at 1 or 2. The supplements are working like a charm.

I'll keep you guys updated, I've thought about placebo a few times, but I guess if it was it wouldn't be for this long :)

Update: Still on my 4 pill morning concoction, + Elavil & Rapaflo..

My Symptoms are still at 1-2 at ALL TIMES.

I forgot to take any accredited quercetin product yesterday, and by the end of day I felt a slight tense up. I think this is working for me so far (keeping my fingers crossed)

I'm doing really well for 2 weeks and counting now! Has anyone else tried this?

Update:

Still on my 4 pill idea, I have to say that I haven't felt this good in a long time, and the best part about it is that its lasting!

Please, anyone.. give this a try.

Hi Sufferinginpain,

Glad to hear that you are finding some relief!

Have you tried any thing else besides supplements and + Elavil & Rapaflo?

I hate to be a downer but you should also try to address some of the other underlying causes of chronic prostatitis / chronic pelvic pain syndrome like anxiety and muscle tensions by doing stretches and relaxation exercises. I don't think the pill concoction addresses the root cause of CPPS, it simply minimizes the pain. If your pain is diminished then thats great! But you should perhaps try to lengthen your muscles and focus on the mental health aspect of chronic prostatitis / chronic pelvic pain syndrome in conjunction with your 4 pill concoction.

Good luck!

I hate to be a downer but you should also try to address some of the other underlying causes of chronic prostatitis / chronic pelvic pain syndrome like anxiety and muscle tensions by doing stretches and relaxation exercises

Well. To be completely honest, I've have a really bad year with my GF. I don't mean this in an immature way, but I firmly believe she was the root of my CPPS. She caused me a lot of stress and anxiety. Unfaithfulness caused me depression, and when trying to work things out (4 year relationship) I could never trust her again, in turn.. things became really really ugly. It got so ugly that I began sitting at home myself, because I was too scared to go out with my friends since she would bitch at me. Anywhere I went she constantly questioned me - it was so hostile. Funny thing is, she was the unfaithful one, and suddenly she's the one with trust issues about ME!? Really amuses me how women think sometimes.

Long story short, I swallowed my pride, my respect, and possibly everything I had in me and tried to work things out in a non-violent way (ohh yes.. she was violent) thank God, I had the courage and strength to finally end it a few days ago, and I'm hoping that my depression and what not will soon fade away as I try to slowly recover from this 4 year relationship. I've gained close to 25LBS in the past 4-5 months due to depression.

Since I couldn't hang out with my friends anymore, or see anyone BUT her - I turned to smoking lots of weed at nights when she didn't bug me to stay with me, and used food (while having munchies) to make me happy. Classic way of feeling temporarily happy. I would wake up the next day feeling like total shit, at one point I couldn't fit in my pants anymore (still can't) - I think it made it even worse.

I've really hit an all time low in my life this past year, and now that I've broken it off with my gf, I can focus on getting better, and having a normal life of friends, family, and the things that make you smile in life.

I lost all my friends, every single one of them. My GF threatened me over and over to screw me over somehow by sending private pictures to all my family and friends. She added all my friends to her facebook, twitter, and all that other nonsense - followed them to see what I was "doing" so to speak. Naturally I distanced myself from my friends just to show her that I don't do anything with them. (Going to clubs/bars etc..)

Hopefully I can start a healthy new chapter of life, I really want to lose the 25lbs I've gained, and I really want to make some friends and try to be more social. I never thought in my life I would have hit such a low.

If anyone has any suggestions / comments / advice / support - I could really use it! PLEASE!

Thank you all

Hey sufferinginpain,

Sorry if I came across as insensitive. I understand that the tie between depression and pelvic pain is very strong. My bout began with my girlfriend moving away to another city. I completely empathize!

Look at it as a blessing in disguise! Your life will vastly improve when all is said and done! You got out of a difficult relationship and ultimately you will be healthier as a result of your lifestyle changes! Chin up.

You did not come off insensitive.. How would you have known? :)

The tie between depression and chronic prostatitis / chronic pelvic pain syndrome is very strong... I've had a good portion of that. I think I started being really depressed right when my GF cheated on me, and things went completely south from there, 3 months after I started getting pain in my testicles and about a month later it had gone bull blown CPPS. It's now been close to a year.

I am absolutely so thankful to God for finally giving me this opportunity, and a LEARNING opportunity, to finally get out of the mess I got myself in. I really hope to begin living a happy life, i have suffered enough.

Dr Wise did mention in his book about how the reason why chronic prostatitis / chronic pelvic pain syndrome is hard to identify for Urologists is because they never really look deep into the patient's root issues of CPPS. Psychology plays a huge role here in us guys, we must be mentally ready to make serious changes in our lives, not necessary physically. I think my story really puts a clear picture of how I developed CPPS. I hope that people can benefit I guess.. Stay clear of the crazy women!!!!!! They have the WORST effect on type 1 personalities!

She sounds like a real nightmare

Concentrate on relaxation and start a calorie controlled diet. You'll be fine.

I'm not sure if this is related or if anyone else has this issue. I feel like my inner thighs close to my testicles, a stinging and shocking electricity type of "spasm" - does anyone else have this? Is this related to CPPS?

Any unusual neurological symptom in the pelvic area can generally be ascribed to the syndrome. Not always, but generally.

Hi sufferinginpain I can relate,

Before the onset of my chronic prostatitis / chronic pelvic pain syndrome 5 years ago, I suffered from dysfunctional bowel movements since age 14. Keep in mind this was 9 years before my chronic prostatitis / chronic pelvic pain syndrome symptoms started. My anal muscles were and still are very tight and I had problems passing stools. I dreaded having bowel movements since I would be in pain for hours afterwards. My anus would feel like it was on fire and it was hard to sit. I ended up seeing a proctologist when I was 15 and actually had a colonoscopy done. They did not find anything wrong and just said I had a few internal hemorrhoids. They did not seem concerned and the proctologist just said my anal muscles were extremely tight. They wanted me to add fiber into my diet and I also took mineral oil for a few years. This would prevent inflammation since my stools would be soft. However if I just missed a day or two I would be constipated and typically get an anal fissure and see blood on the toilet paper or in my stool. This would completely terrify me and I would think I was going to die or get colon cancer later. Each time this happened the pain would be excruciating so I had to follow my fiber plan religiously.

Besides this another foreshadowing to my chronic prostatitis / chronic pelvic pain syndrome started when I was a young kid (8 or 9). I would out of nowhere all of a sudden experience painful spasm in my perineum area. I had no idea what it was since I did not know about sex or masturbation yet. It would last a few seconds similar to a cramp in the foot and go away so I kept it too myself. This would only happen every blue moon. I did not seem to have any sexual problems until age 20 when all of a sudden I started to experience premature ejaculation. I attribute this to abusing Kegel exercises and things went down from there. I had no idea why this happened all of a sudden but this made me extremely depressed since it got so bad I could ejaculate within seconds (worse than a minute man!!!) I have even experienced a time when I ejaculated at a strip club while just watching a dancer at the stage, not even receiving a lap dance The ejaculation caused a ton of pain and was one of my first extreme flare-ups, since I needed to lay in bed most of the day afterwards. This is when I started to research what was going wrong with me and found out I most likely had CPPS.

So I had many precursors to having chronic prostatitis / chronic pelvic pain syndrome before the typical symptoms came up (like pain/fullness in groin, feeling like I was sitting on a golf ball, constant spasms, feeling like my muscles were sharp needles, etc.) Everything seemed to start in the anus and rectal areas. Then I started to have severe stomach aches and this correlated with having premature ejaculations out of nowhere. I really had no idea why I went from being confident with my stamina to being a one pump chump. It took about 3 years before the fullness in my groin came up (end of 2007) that was a constant chronic feeling. It at least gave me a reason behind the premature ejaculations or that something was wrong with pelvic area. However the hard journey we are all facing pretty much started around that time.

Be strong man.

Story sounds very familiar to me and my relationship with my first wife. She always accused me of lying and would show up anywhere I was supposed to be like a sneak attack. She was like a stalker. Very stressful relationship we had from the beginning, but i was young and she was hot so.... and then after dealing with her insecurities for so long I ended up catching her cheating on me. Urgh! Man I didn't see that coming and I was just devastated. However my close friends and family where not surprised. I was so humiliated. Wouldn't wish those stressfull feelings on anyone. Only time can heal those wounds IMO.

Sorry to ramble on but I just wanted to say I learned so much from that failed relationship and I hope you do as well. For example she showed me signs of what I do not want In companion and when I started dating again i would see blatant red flags when certain behavior or attitudes where present. That flag told me to consider the risk or move on.

Hope your doing well and your recovery continues!

Reading your thread gives me hope.