New Member - My Story (redondo21)

[redondo21]

Hi everyone - I'm new to the forums and am curious about your thoughts on my situation thus far.

My Background

I'm 31 years old and, while I have some medical conditions, generally think of myself as healthy. I was diagnosed with type 1 diabetes 13 years ago and keep my condition under reasonably good control. Other than that I didn't really have any other major health conditions until now (just allergies, psoriasis, etc).

How it Began

Last year, I started cycling on a sit-down stationary bike twice a week or so rather than my old exercise (rowing machine or elliptical). Didn't feel any symptoms or anything. Then, back in December my partner and I were "enjoying ourselves" and there was a slight mishap where there was probably a bit of trauma down on my pelvic area. It was more surprising than painful, and we finished. For several days days after that I had some urinary frequency, difficulty maintaining an erection, and a little bruising on the underside of my penis and so I saw a urologist who said I didn't have any serious issues requiring immediate medical attention (i.e. no penile fracture, etc) and would just need time to feel better.

While the erectile symptoms eased mostly, I continued to have fairly severe feelings of needing to "go" pretty constantly (I'd feel better for about 5 minutes afterwards and then feel the sensation again). So I went back to my urologist in February who said I likely had prostatitis. A fluid culture of the prostate fluid came back negative and so he decided it was likely nonbacterial, but put me on a 2 week course of Cipro anyway because of the anti-inflammatory properties.

After about two days of Cipro I felt almost 100% better, but after a few days of feeling great the feelings returned throughout the rest of the course. A few weeks after finishing the antibiotics, though, I felt more or less better and March and April were fairly pain-free.

In May I stupidly went on a long bike ride and immediately started feeling symptoms the next morning. Since then, I've gone on a course of Cipro and then bactrim, both of which had the same effect as the first course (felt great for 2-3 days on starting the course, then bad again).

At my most recent appointment three weeks ago, my doctor did a uroflowometry which came up mostly normal (more gradual than normal, but nothing crazy), a bladder ultrasound which showed minimal retention (about 1 ounce), and another prostate exam (he said it looked like it had gotten a bit smaller, which was an improvement). I actually felt better for about a full day after the visit, which makes me suspect that the exam itself gave me some relief (which my doctor thought to be the case as well).

Since I wasn't feeling much better once that wore off, though, he prescribed tamsulosin (Flomax) and told me to take that if I started feeling bad again.

Since then, with my urologist's approval, I've held off on the Flomax because I'm concerned about the side effects (I know they aren't major, but I don't want to go on yet another drug, plus it sounds like it doesn't do much), and am now trying Saw Palmetto (about 3 days in) and a quercetin/bromelain supplement.

My Current Symptoms

I basically have five symptoms, which I'll rank from most to least bothersome:

1) Urinary urgency - I just have that feeling, probably up around the bladder neck, of almost always needing to go. I'm able to tune it out sometimes, especially if I'm reading or concentrating, but it's REALLY annoying.

2) Pelvic tightness - I have a feeling of tightness around my pelvis, but what's kind of interesting is that generally when it's feeling bad I don't have #1 as much, and vice versa. For example, I'm sitting now at my kitchen table and I feel the tightness but don't feel that much urgency to go to the bathroom (just a little).

3) Urinary flow - at the end there's a pretty lengthy "trickle" and sometimes a little (though not a ton) leakage afterwards

4) Ejaculation - when my symptoms are bad it's more like a dribble than anything else. I haven't really been able to figure out whether I feel worse or better after getting off (I've felt both ways)

5) Varicocele on left testicle - I've had this for at least 8 years now and think it is likely unrelated to my symptoms (as does my urologist). It never bothered me before.

What Else I've Tried/Trying

1) Acupuncture - maybe does a little since there is a massage component as well but doesn't seem to be doing much

2) I'm trying stretching/pigeon pose as recommended on the forum (haven't done that much yet)

3) Standing desk at work - definitely better than sitting

How I feel now

Basically, my symptoms are about a "4" to a "4.5" on a 1-10 discomfort scale (I measure it every morning and it's ranged from a "2" to a "6" since June). Definitely bothersome and they make me pretty unhappy, but I wouldn't call them debilitating and I have not missed any work since my first diagnosis, other than to go to appointments.

My urologist says that if the Flomax doesn't work, he'd next want me to go on a 6-week course of Cipro, and then consider more invasive sorts of tests to figure things out. I like my urologist and he is very understanding and empathizes, but I just worry that he (like most of medicine) just doesn't really know how to bring this issue under control. I have fairly good insurance and am financially stable enough to pay for treatment, it just feels like there's very little out there to help me and that I'm running out of things to try.

[webslave]

1. Fill out your signature please (see link in my signature).
2. More antibiotics are pointless/harmful
3. Penile trauma has led to neuronal windup, "guarding", allodynia and hyperalgesia
4. Saw Palmetto is a waste of time, but make sure you get the free any accredited quercetin product trial
5. If you can afford the Wise-Anderson Protocol, go for it, else get a local PT who understands the Wise-Anderson Protocol to treat you (your location?)

[redondo21]

Will do! I'm in the New York City area.

[webslave]

Then Marilyn Freedman is the cheaper option than the Wise Anderson clinic.

[elitynski]

BEYOND BASICS Physical Therapy gets high marks as well.

[redondo21]

Thanks guys - Beyond Basics is pretty close to me so I am going to check them out after I confirm that what I'm trying now is really doing nothing. My discomfort is almost entirely urinary-related and so I do hold out some slight hope that the Flomax will help, but I think after giving that a shot and taking a few more weeks to see if the quercetin does anything and talking to my urologist (who is fairly by the book but realizes how hard it is to treat this with medication), likely going to check into PT next.

[redondo21]

I just had my second session with Roseanne at Beyond Basics. I've found it helpful, I think, though it's probably too early to tell. We basically work on stretching, skin-rolling type massage, and she does internal trigger point work. My insurance is covering a little more than 50% which is pretty good.

As far as how I feel, my tightness has improved a lot, though the urinary urgency feels about the same. One random thing - I saw my urologist on Wednesday and had a followup prostate exam (he said the prostate looked fairly normal) and was then totally discomfort-free for two days, which was the case on my previous one as well. Have you guys had this experience as well? Is it just that the exam incidentally does some trigger point work?

[Wolfcub]

I just had my second session with Roseanne at Beyond Basics. I've found it helpful, I think, though it's probably too early to tell. We basically work on stretching, skin-rolling type massage, and she does internal trigger point work. My insurance is covering a little more than 50% which is pretty good.

According to your specific case and your description, it sounds highly likely to me that your pelvic muscles are somehow involved (as in most cases, studies found out in recent years)... so an internal trigger point therapy by a qualified caregiver sounds an excellent approach to try. Keep it up. Unfortunately in the area where I live this option is very limited and hardly accessible. You might also want to try a multimodal theraphy, as for many people it gives the combined benefit. Regarding drug therapy, such as specific alpha blockers (alfuzosin, silodosin, tamsulosin, etc...) in many cases one need to be patient untill can see any therapeutic effect (which is more than just a placebo effect, if at all), usually at least 2-3 weeks...Personally speaking, alfuzosin has been helping me a lot (my NIH symptom index went down from 26 to 18). During the first few weeks I felt no effect and I wasn't surprised/dissapointed as I was very skeptical and pessimistic from the first place... but suddenly after 3 consecutive weeks of taking it on a daily basis I felt a significant improvment in my urinary symptoms (which were basically an almost constant feeling the need to urinate and quite slow stream)... in addition, the abdominal aches abd burning sensations became less and less frequent and less intense (before that I felt them almost nonstop), and in the following months to come they reappeared mainly only when I went to sleep (or if wait too long till I pee, for more than 4-8 hours, what also happens to "normal" people). Sorry, I won't "hijack" your post, just wanted to give you a possible example of how patience sometimes can benefit you. Of course, if you take those drugs and feel no effect after a few months, then there's no reason to keep taking them. There are many other options to try, the bottom line is that multimodal therapy might get better results than just a monotherapy... patience, adherence, main caregiver, one try at a time and so are the key terms here.

As far as how I feel, my tightness has improved a lot, though the urinary urgency feels about the same. One random thing - I saw my urologist on Wednesday and had a followup prostate exam (he said the prostate looked fairly normal) and was then totally discomfort-free for two days, which was the case on my previous one as well. Have you guys had this experience as well? Is it just that the exam incidentally does some trigger point work?

During a DRE my symptoms got much worse - an intense burning sensation along the penis/urethra (which continued for a few hours therafter till calmed down to the "baseline"). I didn't find it helpful to relieve my symptoms... My urologist only did this to rule out other things, mainly. But who knows, maybe he touched some of my pelvic area surrounding the prostate and the issue is (mainly) there and not (only) the prostate itself.

Good luck and keep us up to date!

[redondo21]

Thanks - really appreciate your reply and very helpful to be able to put things in perspective. I still have not started the Flomax (opted to go to PT first) but will probably start it if my urinary symptoms remain persistent much longer.

[milou]

Hi redondo21

I have similar symptoms to you, I am now five weeks in and have spent a lot of time doing research since then about my condition. One thing I do know for sure is that conventional medicine and urologists don't really have any answers. Mine is certainly non-bacterial prostatitis or more simply CPPS and probably muscle or trigger point related. Main serious symptom for me is painful need and urge to urinate which at times (mostly at night) is constant and unrelenting. Other than that I have experienced very high levels of stress and anxiety since it started which no doubt is not allowing my body to heal itself which is kind of a vicious circle I need to get out of.

Have tried antibiotics. Did nothing. Was prescribed alpha blockers (alfuzosin) but haven't taken any yet as worried about the side effects.
Hot baths and ibuprofen seem to work well but really only treating symptoms and not the cause. Am trying out Quercetin (started week ago) and Saw Palmetto (started today). No obvious improvement so far from either. Also going to give ProsCure a try if i can get some from the USA mailed to the UK.

Have had pelvic MRI scan which was clear. DRE showed tender prostate which I assume to mean inflamed? Seeing another Uro next week for second opinion. More importantly though seeing PT (Physio) who specialises in CPPS next week to investigate and work on trigger points.

Well worth reading A Head in the Pelvis and Heal Pelvic Pain. I have certainly taken a lot of comfort and gained a lot of knowledge from reading both of these.

Hoping I will start to see improvements soon once I start seeing PT

Good Luck!

[Wolfcub]

Just a quick specific reply for now:
" Was prescribed alpha blockers (alfuzosin) but haven't taken any yet as worried about the side effects" -
in general, side effects are transient and mostly minor ones. Personally, in the first two time I took it I had some minor dizziness and pallor, which stopped when I put myself in a lying position and in the next rounds (till now). Read here for more information about its side effects, I think it could reassure you (however there's no other way but consulting with your doctor who gave you that prescription, of course!): http://www.rxlist.com/uroxatral-drug.htm

There many other specific alpha-1 anatagonists you can try.

[redondo21]

Thanks, both of you! I feel like, at best, urologists are open to the possibility that it's not just the prostate, and are flexible about treatment options. Mine is very nice and understands how there are many different potential causes and conditions encompassed by the "chronic prostatitis" label and so while I think some of his approaches are not helpful (e.g. Cipro), he's open to a wide variety of things and has given me some good suggestions.

I have taken Saw Palmetto and Quercetin but hadnot really noticed any significant improvement. Today is a good day and I did take Saw Palmetto in the morning, but there are so many other factors at play that it's hard to isolate.

My doctor told me that he feels the side effects of Flomax (tamsulosin) are minor and that the benefits outweigh the negatives, so I will probably try it if I have a couple of bad days in a row.

Good luck milou! These problems are such a hassle, especially on top of other life issues and responsibilities. But at least we're lucky enough to be able to pursue treatments - I'm sure a lot of people are forced to just suffer in silence.

A couple of random things that are maybe helpful - some sort of squat toilet platform stool (seems ridiculous but I've found it mitigates my discomfort after BM), and probiotics have helped with random GI symptoms I occasionally have.

[redondo21]

As an update, I've had 6 or so weekly PT sessions thus far and have done a decent (I don't know, 15 minutes?) stretching routine morning and night. My PT does internal work each time and gave me some basic training in it in the past two weeks - I've done it a 1-2 times each week since but have felt pretty good these past few weeks so I haven't done a ton. She's said that she hasn't really identified any trigger points per se, just that I am extremely tight internally, in particular in the quadrant that pushes against the bladder area (which may explain the urinary urgency).

I'd say I feel about 60-70% better on average. I probably have 1-2 days each week that feel like the average discomfort I felt pre-PT, about 4 days with very mild discomfort that is easy to tune out, and 1-2 days that are almost totally pain-free. I plan to go to at least 3-4 more PT sessions, hopefully spacing them out slightly more, and seeing how that works.

Anyway, not totally better by a long shot, but this has done so much more than my urologist has been able to do in about 9 months of work. He has been very understanding and thoughtful, but I think this was just something that couldn't be addressed with antibiotics (for obvious reasons). I still have not taken the Flomax and hopefully won't unless I need to. I also am noticeably more flexible (!), though I've still got tons of work to do.

Will keep you guys posted - while I'm very optimistic, I'm sure that this will continue to be sort of two steps forward one step back.

[milou]

Quick update from me.

I've also been seeing PT (or Physio as we call them in the UK!) for last 5 weeks and have had regular weekly internal evaluation and massage. While this has lead to flare ups (usually the next day), overall I feel I've made good progress with this approach, on average I feel around 50-60% better. I am very lucky that my PT takes a very holistic approach and as such I've also been seeing a Psychiatrist and CBT Therapist weekly to help me with with my mental state and depression that had set in. They are giving me some good tools to help manage. So far I've resisted anti-depressants and remain drug free, except for NSAIDs now and again when needed. My PT has given me some massages to do daily (external) plus daily magnesium supplements. He also wants me to start acupuncture, primarily to reduce anxiety which I will try.

I'm not out of the woods yet and still in pain and discomfort but I think I'm on a good track even though I'm still off coffee and beer, both of which I love.
Hoping I can get to 100% better over next few months but it is slow progress and patience is indeed a virtue!!

Will keep you guys posted on progress.

[redondo21]

Just to update - I got to a point in mid-November where I was feeling 80-90% better but unfortunately things got tight again and I definitely took a step back to where I was back in September. I tried the tamsulosin (Flomax) and it definitely helped with the weak stream, but it caused ejaculatory side effects that weren't acceptable. Thankfully they mostly disappeared within about 3-4 days of discontinuing.

Since then I've been focusing on doing internal massage with a wand about 3 days a week, focusing internally on my left side which is particularly tight, doing a pretty long stretching routine morning and night, using a hot water bottle a few times a week, and continuing to see my PT weekly. Probably back to feeling about 60% better.

The big difference for me, really, is that before I started PT and doing this stuff I felt I just could not deal with these symptoms. While things still are just partially improved, I have days that are mostly pain-free and I feel like there are things that I can do to make myself feel better. Hoping to try decreasing PT visits next month (it is pretty expensive, though I think it has definitely been worth it).