My story -- please help!

[ChgoGuy]

Anytime!

[Sgottes2]

Hi All,

Just a quick question about prostate cultures / antibiotics. My first antibiotic (Bactrim) gave me an allergic reaction and I am resisting trying Cipro for obvious reasons (even though two urologists have advocated for it). My plan was to do a prostate culture and then decide. I wanted to rule out bacteria before going on to other routes. Webslave recommended doing it if money is not an issue, but I’m not really in a position where money grows on trees. I could do it, but want to make sure I’m not throwing cash down the toilet.

Two of the articles on this site (main site) say that they are a waste of time. A positive culture won’t necessarily indicate the need for antibiotics (because 30% of symptom free men have bacteria in their cultures). One particular line in one of the articles caught my attention—“Some men with “non-bacterial CP” as it was called at the time I was doing all this responded to antibiotics, others did not.”

So does that mean “some men” actually do get rid of this condition by taking antibiotics like Cipro? And should I give myself a trial (like the urologists want) without having a culture?

Conversely, I found another article, from another local urologist, which really resonates with me. Sarah Flury seems to advocate for prostate cultures before going on antibiotics. Please have a look and let me know what others think. Just having an incredibly tough timing even getting started here before going the Physical Therapy route (have more questions about that which I’ll ask in another thread). Here is the article I’m talking about:

https://www.pcf.org/c/prostatitis-misdi ... nderstood/

[ChgoGuy]

Following

[webslave]

Sgottes2, in your shoes I would not bother with a culture, and I'd avoid the antibiotics. As Dr Flury says, bacterial causes are rare, and your case history does not fit the bacterial profile anyway.

[Sgottes2]

Thank you. I think I’m going to use her as my urologist going forward. If she wants to do a culture then I’ll comply. Appreciate the advice.

[Sgottes2]

Just wanted to say thank you again to the webmaster for keeping this forum alive. I feel bad calling you "webslave" -- do you prefer that or Mark (I read your story)? Pretty amazing that you are continuously donating your time to help people like me.

I know I'm a little bit difficult to work with, per my long posts and somewhat of an unwillingness to take the steps needed to help myself. I also know I'm preaching to the choir when I say this, but this whole thing (CPPS) really sucks. My symptoms are not bad enough to get me off my ass and do the things I need to do to fix it, but bad enough to annoy me every single day. Right now, I don't even feel much discomfort (and haven't really today, other than some slight urinary symptoms which have been par for the course for many years, prior to the pain). Quite honestly, over the past 2 weeks, I've eliminated physical activity (other than walking) and self gratification -- and I feel like it may be helping -- but to an insidiously small degree. It's very difficult for me to abstain from things I enjoy, but I would do so for a year if I knew it would knock this thing out for good.

Sorry to ramble. I guess I'll finish this post with some practical questions that I have not been able to fully answer by reading this forum. I did order any accredited quercetin product by the way... the code worked after a while. That's something I can easily incorporate into my routine.

1. What are some physical activities I can do, other than walking, that are "safe" and won't likely aggravate this problem or delay healing? I like to run for short periods (20 minutes), is that OK? Pushups? What if I switch to elliptical? Or stair climbing? Any ideas? I need more heavy aerobic exercise (than walking) to keep my stress levels down.

2. I have a real fear that all physical contact with the pelvic floor area will set me back. That's why I've been reluctant to start PT, and is one of the reasons why I'm avoiding the prostate culture. Is there any validity to that worry? I'm not talking temporary flares, my concern is delayed healing.

3. I read Wise's book -- I don't know how anybody has time for 2-4 hours of "Extended Paradoxical Relaxation)" per day. Does anybody actually find the time to fit that in? I'm assuming an effort at stress reduction (maybe meditation twice per day for 20 minutes) would help tremendously -- but the book insists on 2-4 hours. Not realistic.

4. Would PT once a week even help? Again, Wise seems to insist that you need to learn how to treat yourself and do internal work yourself 4+ times per week. I just don't know if that's in the cards for me. Have people gotten rid of this with plain old PT once weekly?

5. Does this problem ever just go away on it's own? I can't shake the feeling that mine is related to protracted withdrawal from cannabis, and that if I stay abstinent long enough, it will just go away.

By the way, ChgoGuy, I made an appointment with Sheila Dugan. I may cancel (again, concern about physical contact with the area), but I appreciate the referral very much.

All the best everyone.

[ChgoGuy]

1) I can tell you that walking does it for me. Moving in any form brings me relief, but sooner than later I got to sit or rest. Then the fun begins. NOT!

2) I think you have to expect that contact with the area, is going to have it's ups and downs. I'm not sure you can avoid it. (Yeah that sucks!)

3) I agree on the difficulty of fitting in all that time. There are not enough hours in my day. However, I think that the more you do it, the easier it is to make the time for it. But 4 hrs would really be difficult for sure.

4) I think PT once a week helps, but I think you need more than that. My first stint was 1 x week for 6 months. I think PT would better serve you by learning how to help yourself more. I always depended on my PT to be the healer, but only I can truly heal myself. So I go back in 2 weeks to take it more seriously and pay more attention this time. Hopefully I learn something new, so that I can take it home with me and take the next step.

5) Maybe - IDK how to answer that. I never smoked weed so, I can't relate to it in any way, shape or form.

Last but not least.... I never got that far for Dr. Dugan to prod or poke around too much. I've seen her 3 times. The first was to consult with her, and hear some options she had to offer. She did put me on Gabapentin and wanted me to take Cymbalta. The Gabapentin constipated me and made things worse, however all the meds I was on at that time were constipating me. Would love to take Cymbalta again, but I have reservations about one side effect, and both times I was on it briefly in the past for other pain, my liver enzymes shot to the moon. But I think it's a good idea to get some ideas and advice from her. It doesn't hurt to listen and perhaps give something a try. I still may go back to see her in the future. If you don't like what she has to say or offer, then there is no harm in not returning. I personally believe that the best options are so inconveniently located here in Chicago. Not to mention with traffic, a 15 min ride any other time would take 2 hrs by car during most of their office hours. 2 hrs for me in a car would be a nightmare after an hour spent in the car. Not sure I could do it, or else I might go over to Northwestern myself. I had to get really psyched to get over to Rush to see Dugan. That's how bad I was suffering at that time.

[Sgottes2]

Interesting... thanks for your replies ChgoGuy. So she doesn't do a physical examination like a PT would on a first visit? If that's the case i'm definitely keeping the appointment.

In my situation, it's all about me getting off my ass and doing the things that i've been reading about for a while now. I'll bet if I quit alcohol (despite the very clear temporary relief) for a while, cleaned up my diet (Less or zero dairy / gluten) and found some way to lower stress I could beat this. The problem is that there are just so many avenues... and i'm resistant to giving up the last few vices that give me pleasure. And i'm still weary about contact with the area, like i'm set on some sort of inflammation that may get better if I just do leave it alone for a while.

I'm interested to hear what others think about aerobic exercising other than walking. I need something that gets the heart pumping a little bit faster. Just something to relieve the stress, like running always did for me. I would like to do upper body and ab work too, even if it's just basic. Any ideas? I want to smoke pot again as well (sorry, I know it sounds a little nuts), but i'm pretty sure that has played some role in the complex series of life choices that have gotten me to where I am today.

[webslave]

1. Generally anything other than swimming in enclosed pools (chlorine can be a trigger for some) or weightlifting using the pelvic muscles (squat-type exercises, which may included stair climbing) is fine. Don't get exhausted though, do it in moderation until you are healed. Walking is a good choice.
2. Will not delay healing, but PT can cause a flare, initially, when the hyperirritable muscle fibres are goosed. Not everyone gets this flare.
3. 2-4 hours ... that's for more severe cases. Do what you can.
4. Yes, even once a week helps, but once you start prodding and poking trigger points it's best to do it intensively, based on my experience with the trigger points in my shoulders. So learning to do it yourself is quite important.
5. Yes, it can go away in time for some people, without any obvious changes in lifestyle, although that's quite unusual. Most men have to change mental attitude, treat the spasmed muscles, and use various other strategies as discussed in this forum before healing. Cerainly cannabis is a trigger for some men, so keep away from it. That may do the trick for you, especially since you have a mild case.

[Sgottes2]

Quick question: I seem to feel worse (penis tip pain/numbness only) after starting this new stretching program (from Headache in the Pelvis). Is that normal? How often should I be doing the stretches? It’s also a bit worse after running, and definitely worse after a physical exam. Why is it that everything I try to do to solve this problem results in more discomfort? And only in that one area, if I may add. When I don’t stretch or exercise in the AM, I get longer lasting and more satisfying relief in the mornings and early afternoon then when I do stretch (pain usually gets worse around 3-4 pm).

Starting PT next week with a new provider who was recommended by Dr. Dugan in Chicago (who did a thorough exam and said I have a lot of tightness in certain areas — can post a detailed description later). I have high hopes. Will ask her about the stretches, but I’m wondering what this community thinks. I’ve come to learn that this particular symptom is likely a result of nerve damage from tight pelvic floor muscles. Is it likely to resolve after many months of PT and following the right relaxation protocol?

Finally - is it safe to use lidocaine on the tip of urethra? I’m considering trying it.

Thanks as always.

[webslave]

Why is it that everything I try to do to solve this problem results in more discomfort?

That's a sure sign that you have trigger points in the pelvic muscles. TrPts are notorious for flaring when provoked by manipulation and movement. But you have to power through the flare to get to the other side.

Is it likely to resolve after many months of PT and following the right relaxation protocol?

Yes. It's helpful if you take a part in the treatment too. Seeing a PT does usually not happen frequently enough.

Finally - is it safe to use lidocaine on the tip of urethra? I’m considering trying it.

Topical anesthetics are safe.

[Amonges]

Sgotte, flare ups are the worst especially when pressing on them. Make sure you hold them firm and a bit hard for up to 2 minutes and even up to 4 minutes. I have experimented and holding for about 30 to a 1 minutes only after flared me up for a couple of days. While your holding them you must use diaphragm breathing. Breathe in and out slowly with your belly not your chest. It’s the worst feeling the pain when pressing which makes you feel super uncomfortable like you want to jump. Like I told chgoguy, accept the pain and know it will go away. When your holding it and the pain starts to subside you know you are doing something right. ;)

[Sgottes2]

Thank you for the replies! Should I just keep on stretching everyday, even though it makes me feel worse? Is once daily enough?

I’ll start with this new PT next week and then consider treating myself when I start to feel like I know what I’m doing.

I have had a few isolated sessions and I always feel more pain after the session. During, I feel sore locally when they press in certain areas, but I don’t get that referred discomfort to the penis tip (it comes after). Is that fact meaningful to anyone? I think I may be so focused on the feeling of someone having their finger in there that it overshadows the referred pain, if it’s even happening during trigger point manipulation.

[ChgoGuy]

Sgottes2 - If I'm going to get a flare outside of sex or a BM, it generally starts up between 2pm and 4pm for me. So I can relate once again. Hope to hear about your experience with Dr. Dugan at a later time and your PT.

[Sgottes2]

I’ll keep you posted for sure. Thank you very much for the recommendation. She was good — a little fast — but examined me thoroughly and helped to ease my mind about this being nonbacterial. Found a lot of tightness in my PF muscles. I just wish somebody could directly address the tip pain / tingling — my main concern and the bane of my existence right now. Hopefully that will resolve with treatment over time.

She also offered Valium suppositories. Any experience? Oral Ativan works so well for me (both on anxiety and muscle relaxation), I’m hesitant to go the other route.