My story -- please help!

[Sgottes2]

Hi All,

I'm new here. I want to thank you in advance for your thoughts on my predicament. I've been doing a lot of reading here and I trust the opinions of many of this site's members (especially the longer term ones) over most urologists, who seem to have no idea how to treat this issue nor much of an interest in doing so. I have a lot to say, so i'll try to stick to constructive comments within this first post... apologies in advance for being long winded.

This became a problem for me at the end of May -- approximately 2 months ago. It started one day after masturbation, when I noticed an intense tingling at the tip of my urethra. The tingling stayed with me for about a week -- it would be intense for 5 seconds and then disappear for 10-20 minutes, only to return. After one week, this turned into a more steady numbness / tingling, with less intensity, but without any noticeable off periods. Right at the tip of the urethra. Since that time (7 weeks), it has progressed into an annoying pain (3 out of 10), which is either at the tip or just off center to the left. The head / tip is also almost always cold to the touch. Kind of scary, even more so than the other symptoms. I also have occasional tenderness in my right testicle (seems to last hours to a day and then subside) and some other random tingling in the testicles and overall genital area. Also have some urinary issues with frequency (wake up at least twice nightly) and incomplete emptying. Those symptoms are at least 5 years in the making, but it never bothered me enough to have it professionally looked at. Those do seem to be getting better, to be honest.

Pain is worse when I sit and barely noticeable (if at all) when I lay down. Some irritation at the tip when rubbing against my clothing and while walking around, but not as bad as when sitting. Donut cushion helps with sitting. Alcohol and Ativan help -- sometimes one or either substance makes it disappear entirely (both definitely do make it disappear). Anxiety makes it worse. Focusing on a particular task at hand helps considerably, but once I stray from that task notice the issue again. I quit a long-time marijuana habit 4 months ago and I suspect this CPPS (or whatever it is) is the result of my CNS being all messed up. I had other health issues going into this (insomnia, terrible acid reflux / chest pains, anxiety, anxiety driven high BP) which is why I quit marijuana. One by one, withdrawal symptoms from the marijuana (fatigue, headaches, worse insomnia) have come and gone -- so i'm hoping this will follow suit at some point (wishful thinking I suppose). Acid reflux has improved significantly, as have insomnia and to some extent BP (not so much anxiety though).

I've been to 3 urologists for this in 2 months. The first one gave me anti-inflammatories (little to no help), the second one gave me Bactrim (which gave me a severe allergic reaction) and then wanted me to take Cipro (haven't yet) and the third one wants me to take Cipro for 6 weeks and Alfuzosin to "relax the pelvis. " I'm resisting the antibiotic therapy at this point and hesitant about the alpha blocker. I've made an appointment with a fourth urologist in my area who seems to be extremely competent (I'm confident this will become my urologist going forward). I have also tried PT -- found a male therapist at Athletico. Two sessions with him and I was not comfortable proceeding. I felt like he didn't know what he was doing, followed a cookie cutter approach (for incontinence patients), and I honestly just did not trust him. He was having me do kegels, left me alone in a room with a biofeedback machine, and didn't say a thing about stretching or external TPs. My gut tells me to find another PT -- which I am sincerely considering doing. Found a good recommendation on this forum actually. My initial questions are:

1. One urologist offered to test my prostate fluid to confirm bacteria before having me go on Cipro (per my reservations). I feel it's a good idea just to rule it out. What are others thoughts? Worth putting myself through the "prostate massage"?
2. What is the right next move here? I'm trying not to totally up-end my life over this, but will do what needs to be done. Should I try PT, relaxation, stretching, etc. for several months before going gluten free? Do I even need to go the internal PT route at this time?
3. The tip of penis pain / numbness / COLDNESS is so weird. Those being my worst symptoms, what is the best plan to help?
4. Masturbation and sex does not hurt, ejaculation does a tiny bit, but things are more uncomfortable afterwards and even the next day. It's hard for me to just stop this completely. What is the right frequency here? 2x per week OK in my case? I used to do one or the other at least daily or even twice for years, which I think may have contributed to my current predicament.
5. Has anyone cured this by going on a benzo for a longer period of time? For me, it basically gets rid of the feeling. I'm wondering if a month-long trial of daily valium, while risky, might give me enough freedom from anxiety for this to heal. Heck, i'd even go on it long-term if that's what it takes to be free of this annoyance. Any wins on record for this strategy?

I know my post is too long, so I'll stop for now. I certainly have other questions which I will ask in the coming days / weeks. Thank you again everyone for your help and thoughts!!! Reading Wise's book at the moment, so hopefully that will help provide more clarity.

[webslave]

1. For your peace of mind, and if cost is not an issue, then yes
2. All of the above. Shotgun approach may lead to faster progress. Get any accredited quercetin product as well. Wise clinic if money not problem, else get Therawand/Theracane and proceed cautiously
3. Typical symptoms, very common
4. Post-ejac pain is a hallmark of CPPS. 2x per week is about right, but see viewtopic.php?t=627
5. Benzos are never curative, but can be useful as flare-breakers and when under great stress. 4 weeks max, 2 weeks better.

[ChgoGuy]

Sgottes2 - I see you live in Chicago too. Which Uroligists have you seen and who are you going to see next - (of course if you don't mind me asking)? At first I was confused where to do therapy. I almost went the Athletico route at first but glad I didn't. I go for PT in Park Ridge @ Kamin when I do PT. Also there is a good therapist in the Lincoln Park area. I don't remember her name, but I can get that easily. What part of the City or suburbs are you located?

[Sgottes2]

Thank you both. I’m in Lincoln Park myself, you? Who is that PT you mentioned? I was thinking of trying Kamin but it’s a little bit far (I see that they do take insurance which is huge). I saw three uro partners — justin Cohen (worst), Ronald Kim, and Steven Mutchnik (best). I’m going to see Sarah Flury in September who looks really good. I read an article she wrote online and it was right on the money in terms of being cautious about antibiotics in CPPS patients and a tailored approach. WS - do you think the prostate culture will be significantly more expensive than a typical urologist visit? I didn’t think about that. So far I’ve been charged $50 per visit by my insurance. Thanks again. ChgoGuy, where are you at?

[ChgoGuy]

Let me reach out to somebody who can get me her name for you. I will get back to you when I can. I'll answer your questions then - too. I think her name can be found on here with a search, but kind of pointless without the name.

[Sgottes2]

Thanks. Question about any accredited quercetin product / Quercetin. Is it really imperative to use those brands? How much do you need to take daily and for how long to see results? I have now brand quarcetin with bromulin that I was taking but didn’t stick with it for too long. any accredited quercetin product is pretty expensive, any thoughts on now or a cheaper brand??

[ChgoGuy]

I live on the NW side near the airport. That's why I go to Kamin. They have more than 1 therapist for this, and the owner Bernadette has been doing this for years and well respected. I see Melissa at Kamin and I totally trust her, even more than any Urologist. With 5 therapists, its easier to get an appointment for me.

I see you are dealing with Uropartners. Not to say all their people are bad, but I had bad luck with them. They have turned into a huge business that I think is more concerned with becoming the biggest guy on the block. Again... Not saying there aren't good Urologist in their huge network. My first Urologist was thru them. However.... There is a bright star with Uropartners named Dr. Lawrence Levine who is at Rush. I believe he may have an office with Uropartners and his own practice on the Rush Campus. I've never seen him (yet) but he is well respected and does deal with mens pelvic issues.

I also would like to give a shout out for Dr. Sheila Dugan @ Rush. She does Physical Medicine out of their Neurology Department. I have seen her a few times and I like her. She is really passionate about mens and women's pelvic pain issues. My only problem is that Rush, like most of the University Hospitals in Chicago are in the most inconvenient areas for car traffic and parking. Dr. Dugan IS NOT with Uropartners, but I do believe Dr. Levine does refer patients to her too.

Lastly... The therapist I was referring to is in Lakeview not Lincoln Park. Her name is Brigid Ellingson @ Lakeview Physical Therapy. 4001 N. Ravenswood. I've never seen her, but there is an acquaintance to my sister who does.Heard she is very good especially with trigger points.

[ChgoGuy]

Btw - My insurance BCBS of Illinois has gotten really greedy about paying for any future PT appointments. Could be my employers fault too, but I pay a lot out of my pocket now for things that are denied. They say this is really only a Woman's Issue. Bastards!!

[ChgoGuy]

While doing a little research, Brigid may actually be doing her PT at a location on N. Southport near Addison. If interested, you may have to make a few phone calls.

[Sgottes2]

Got it, thanks so much for the information! I will find out more about Brigid. Interesting about blue cross insurance. Do you have a PPO? They paid for my first two visits at Athletico (except for a $50 copay). How long were you going before they started to deny?

I’m not sure about Sheila Dugan. I have heard of her (from the Athletico guy, which makes me a little weary). What kind of advice have you gotten from her that has helped you?

[ChgoGuy]

In regards to BCBS.. I have the PPO. The first time I did PT, I did it for almost 6 months. Surprisingly they kept allowing extra visits in blocks of 7 or 8 , but only after an evaluation by the PT at the end of each block of visits. By the 2nd year, they cut me off after 7 visits. I appealed and it took 6 months for them to allow like 6 or 7 visits.

Now here is the thing. It may all depend on your employers contract with them, but the Company Telligen manages the PT for BCBS for me. They will allow you 7 PT visits per calender year no questions asked. But something changed the 2nd year. Telligen hired a Dr., who dragged his feet for those 6 months to fight my appeal. It took him 6 months to do a conference call to my Urologist just to lie and say men don't get pelvic pain, so as to save BCBS money. 6 or 7 wks of PT does nothing. Its a long process that takes patience. So they screwed me. Next month I will begin my 7 unquestioned visits for this year. I am doubling up on those visits at a cost of $150 pet visit out of my pocket. The usual copay was $30 for me before Kamin went In Network last year.

As far as Dr. Dugan goes, she is highly respect by many local PTs. My PT referred me to her. One thing about her, is that she will try hard to find anything that might help, but there are a lot of avenues and bridges to cross. Not everything works for everybody, so it could take a lot of effort and time as a patient. She can also be a bit tough which is what some people need. If you aren't doing your part to help yourself out, she can't help you. Which is par for the course with any Doctor. I only stopped going to her, because of my job and scheduling conflicts, which is all on me. I stopped going too early to find any help for me. Scheduling with her is usual 3 months out by phone. One thing she will stress, and that's physical activity like walking and swimming. You can't be a couch potato with this.

[Sgottes2]

Thank you. What do you mean in that it was a $30 copay before Kamin went in network? What is your copay now for each of the first 7 (unquestioned) visits?

Interesting that they cut you off after 7. I’ll have to check with my insurance. It may be worth it to go to one of these higher priced (out of network) PTs if insurance will only pay for 7 anyway.

Insurance confuses me. I’m never sure what is “subject to deductible” and what’s not.

[Sgottes2]

Also, I’m not sure I’m ready for Dugan yet. There are so many remedies that I’ve learned about already that I can try — gluten / dairy free, PT, stress reduction — that I don’t think it makes sense to add another doctor to the mix just yet. Trying to take it one step at a time. My symptoms are annoying as hell, but mild compared with a lot of guys I’ve read on here.

[ChgoGuy]

I suggested Dr. Dugan as another option if need be. I'm sure there are some medications, therapies and injections she may suggest that may be a waste of time. Its good to get a lot of info on this forum so that you are informed before seeing any Dr.

Kamin was considered Out of Network when I first started, only meaning they accepted BCBS at 70%. - 30% out of my pocket including that copay. Last year they went In Network, meaning it's covered at 90% - 10% out of my pocket. The copay the 2nd year got a bit fuzzy. Depending on which goof I spoke to at BCBS, some said there was a copay and others said it was zero In Network. So I just stopped paying and waited for the bills. It didn't matter. Those first 2 years, I met my annual out of pocket for the year by Feb. So after that, most of my medical expenses were 100% covered by March.

[Sgottes2]

Got it, thank you!