No diagnosis yet. Need Help.

[walla71]

Burner, I've been through 1 PT session with Marilyn and another 2 PT sessions with another PT at Marilyn's office who I actually think is better or at least on par with Marilyn. After the 2nd PT session, I actually had a full week where I felt 95% better. I had the occasional feeling but I didn't really give much thought to it. Last week, I started having a little urge to urinate again with some penile discomfort but nothing major. I went to another PT session this past Thursday and I'm feeling OK since. She noticed that the internal muscle were a lot looser than the last time and it didn't hurt as bad as during the 2nd session. Generally, the PT sessions are pretty painful and I don't look forward to them but so far I feel like they are helping. The most important thing that has made me feel much better has been to try to get back to my life. I was avoiding everything before, neglecting work, home, etc but now I don't let this problem prevent me from doing the things I used to. This issue still creeps in my mind too often than I'd like but I'm hoping that as time goes by, it won't.

How have you been faring over the past couple of weeks?

[Burner2k]

Walla,
Glad to hear your drastic improvements...access to a good PT can do wonders for us. I am in San Fran bay area now and have an appointment with folks at Pelvic Pain Rehab this week. That is one of the reasons why I moved to SF Bay Area...have myself treated by a good PT before leaving the country. As far as my symptoms, they have got better...I would say around 15-20%...not as drastic as yours. Can you please elaborate more on the protocol you are following under the guidance of Marylin Freedman folks?

[walla71]

I've been getting both abdominal and internal trigger point release every other week. I'm also doing some stretching and light exercising at home occasionally working my abdominals with a Theracane. I haven't done any internal on myself and right now, Marilyn doesn't think it's absolutely necessary considering the fact that my internal muscles have felt better. Like I said though, I'm not really doing all that much besides trying to get on with my life. I don't know what's helping, whether my mental state is better from the Zoloft or the Elavil I've been taking at night (10 mg). I'm also taking a cocktail of vitamins that someone on another forum recommended since we had the same symptoms. He said his symptoms pretty much went away after 6 months after he started being more positive and taking vitamins without any other lifestyle changes. So daily, I take 1 Magnesium, 1 Vitamin D, 4 triple-strength cranberry plus vitamin C pills, 4 Echinacea, 4 any accredited quercetin product tablets, 1 100mg Zoloft, and 1 10mg Elavil. Hope this helps. I also want to say that I am definitely not back to normal. I still have periods where I feel that need to urinate and it just doesn't feel right down in the pelvic region. It does feel better than it has over the past 3 months but I was catastrophizing a lot back then and everything felt bad.

[walla71]

Hey everyone. I haven't posted here in a while but I figured I'd give everyone an update since many of you contributed so freely when I was having a hard time. I was a headcase last year and just coming here and posting brings back terrible memories. It's been over a year now since this condition came into my life. The first 4 months were the worst but since then, everything has been ok. I can't say that I'm cured or anything because I still get symptoms 1-2 times a month. I got off the drugs at least 8 months ago or more. I was taking Elavil, an anti-inflammatory and an antidepressant. Now I just take a cocktail of vitamins. I take them religiously because ever since I started taking them, my problems haven't been so bad. I don't know if they're doing anything but now I won't stop for fear that the worst may come back. I'm still not positive of the triggers but I believe that coffee, beer, and ejaculating are the culprits. (like a lot of people say) I don't think it's a coincidence that I can lay off these things for weeks and then indulge, only to have minor symptoms come back. I've pretty much quit coffee but have a cup every once in a while. My state of mind is much improved. I'm kind of a control freak and having chronic symptoms can really be worse for a control freak. Back when all of this started I just couldn't except the fact that my body wasn't perfect anymore and I had these annoying symptoms. Since then, I realize that a lot of people are worse off and have chronic symptoms that they have to live with. I'm living with mine. When they come back, they tend to be short lived and minor but it still can get me down sometimes. I think that just accepting the symptoms has helped me get through this. I may have to live with this for the rest of my life and sometimes that's hard to accept but it gets easier and easier. I've given up on doctors. I haven't been to a doctor since after the first 4 months. I went to Marilyn Freedman (rectal massage) twice back then and quit that. I realized that no one could do anything for me and I went to some good doctors in NYC that were recommended on the forums. I guess my advice would be to accept it and once you've done as much as you can with doctors, find what works for you and stick with it. I think the first couple of months are always going to be the worst for everyone but it does get better. I didn't believe that back then and I can't make a believer out of any new sufferers. Unfortunately it's just something we have to go through by ourselves..... Good luck.

[Burner2k]

Walla,
Good to hear that you got things in control. For my (& others') benefit, would you mind sharing details of the your vitamin cocktail? Also since you live up in NJ, was cold season worse than summer or fall?

Sorry this question is more of an intimate nature, please feel free not to answer if you are uncomfortable with it. Have you been taking easy on ejaculation as well? If so, whats your frequency like?

Take care...good luck.
-B

[walla71]

Hey B, I heard others say that cold season is worse but for me it didn't make a difference. This all started in the Spring, 2010 for me and that's when it was the worst but we're already through Spring, 2011 and it's nothing compared to last year.

Vitamin Cocktail: Cystoprotek which has Quercetin (4 daily), Fish Oil (4 daily), Vitamin D (2 daily), Multi-Vitamin (2 daily), Cranberry Fruit Concentrate Triple Strength 6000mg (2 daily), Cat's Claw 500mg (2 daily), Echinacea 400mg (2 daily), Saw Palmetto 1000mg (2 daily), and Magnesium (1 daily)

I have been taking it easy on ejaculation. I remember when I would've ejaculate more than once a day but those days are over. I pretty much keep it 1-2 days a week.

Take care.

[Burner2k]

Walla,
I hope your cocktail of Vitamins is based on a post you made a year ago.

I'm also taking a cocktail of vitamins that someone on another forum recommended since we had the same symptoms

Can you please name the forum and a link to the conversation your guys had if possible? Just curious...

Thanks,
- B

[walla71]

Burner, I don't remember the forum now. It was last year and I tried to do a google search for it but I couldn't find it. It is generally the same cocktail based on my post a year ago. It could be acting as a placebo but I've seriously stopped taking them for a week only to have my symptoms increase... I start taking them again regularly and they disappear. This is all I got at this point and I can go on living like this for the rest of my life without any anxiety. Sometimes it sucks when I get a whisper of a symptom increasing and it's depressing to think that it may be here forever but that thought goes away quickly. Damn, my knee pain from playing too much tennis is more aggravating.

[walla71]

Well, I'm back to square one with my mental state again. This time I'm fighting tinnitus. I'm as much of a wreck as I was when the chronic prostatitis / chronic pelvic pain syndrome came on last year which is when I noticed tinnitus also. But it wasn't really that bad and I didn't obsess over the tinnitus because I was busy obsessing about the CPPS. Last month, the ringing started getting louder and now I can't even function. I've been to multiple ENT's and though I have slight hearing loss in the ringing ear, it's not hearing loss that abnormal for my age. I've seen that others on the forum have tinnitus also so I'm wondering how this is all related. I just started taking Zoloft again since I got off of it last year after everything was getting better. This is just so frustrating.

[webslave]

You've probably taken a drug that is ototoxic. Even Cipro can be ototoxic (see study). Most CP/CPPS patients get deluged with antibiotics, some of which are ototoxic.

I have a constant mild tinnitus too, which I am able to ignore.