Hi all,
I wanted to introduce myself, my story (long winded so I apologize in advance) and maybe some advice going forward. Writing this out like this proved to be more cathartic then I thought so again, I apologize.
BACKGROUND:
I'm a 40 year old male living in NYC. I also have a city job, which you would think would give me access to awesome health coverage
(More on that later). I've been in a monogamous relationship for the last 5 years and my partner is loving and supportive. We tell each other everything. We are sexually active to the tune of 1-4 times a week, so average it out to twice. We enjoy each other, completely satisfy each other, no issues at all. I'm close with my family so the my father and brother know whats going on as well. I'm blessed that way.
I'm extremely active. I workout 2-3 days a week, rock climb, run and I also ride a road bike. I like to think I'm a fairly healthy guy. I don't smoke, I drink socially but nothing crazy and mostly weekends. I eat pretty well and I have been taking a Multi vitamin, fish oil and Glucosamine/msm for joint health for about two years. Right around that time I started taking Whey protein supplement powder to make some bigger gains in the gym, roughly 3-5 doses a week.
About a year ago, I started noticing I was urinating more frequently but didn't think anything of it. Last may as the weather warmed I started road biking a lot. With some new friends getting into the sport I upped my mileage per session quite a bit. I did some 50 mile rides and two 70 mile rides between June and the July. Usually I average about 2 hrs a week riding which isn't that much, to maybe 3-4 hours a week when I would throw those longer rides in. I did spend some time going through seat position changes during this time. No pain anywhere down there at all during that span.
FIRST TIME I NOTICED SOMETHINGS UP:
After one 50 mile ride at the end of July, I began to have to urinate constantly. Other symptoms included some vague abdominal pain, some discomfort in my testicles and at the same time I began to notice some discomfort at the head of my penis, only when it was erect. No burning when I urinated and no burning when I ejaculated. symptoms lasted about a week and then began to subside, EXCEPT the penis discomfort. I did another 70 mile ride about 10 days later, symptoms returned and I made a trip to an urgent care. Explained the symptoms and they took some blood. Symptoms were pretty constant at this point. Got the blood work back and they were a bit concerned at some slightly reduced kidney function that the urgent care doctor thought was attributed to the Whey Protein I was taking so I immediately stopped taking that. My PSA was normal however she didn't do a manual prostate exam. I was urinating 8-16 times a day including 1-3 times a night. Before all of this I still got up once but that was it.
Decided to go to a urologist and after explaining myself he diagnosed me in the room with
Chronic Prostatitis. Said it could have very well been caused by the longer bike rides but couldn't be 100% sure (he rides as well). He told me after the manual prostate exam that my prostate was slightly enlarged and most likely "inflamed" causing my symptoms including the discomfort in my penis.
He put me on 3 weeks of antibiotics and also ordered a testicular sonogram and pictures of my prostate. Initially he put me on Cipro, but after a day (2 pills) I felt weird, achey, so they switched me to Bactrim. My cousin is a pharmacist and she recommended me taking a probiotic with each does of antibiotics which I did. 3 weeks and no change up or down in symptoms. The testicular sonogram was negative for anything bad and the prostate pictures confirmed it was slightly enlarged. At that point he told me to give it 6-8 weeks to see if symptoms improved. If not he would suggest a Cystoscopy to check my bladder and urethra and or also try me on something called Rappaflo which is similar to flowmax which relaxes the bladder and allows more urine to pass however there were some side effects: inability to keep an erection, loss of semen during ejaculation and light headedness. I decided to try it anyway and every one of those symptoms hit me lol. It also didn't help me with my symptoms so after a few weeks I stopped. My overall symptoms got "slightly" better but 6 weeks later, October 31st we did the cystoscopy in his office and the results were negative for anything wrong with my bladder and my urethra was clear. He did warn me that the procedure could cause my "symptoms" to flare up, which is exactly what happened. Something else happened, my penis pain got worse. Before this I was so focused on the urinary issues and the discomfort in my penis wasn't that bad I wasn't thinking about it as much. Forgot to mention that I haven't been on my bike since the first week in October. Very gun shy about getting back on.
Erections were more painful and sex was uncomfortable but successful. On a scale of 1-5, 5 being outright impossible pan, I'm at a 3. Almost numbness at the tip, feels like stretching. No weird bends anymore than normal and no narrowing like I had read about. Started doing some research and every time I punched phrases into google, it led me to Peyronies
I went back to the urologist one last time before the end of the year (my insurance carrier was dropping him as of January 1st so I knew I needed to find a new urologist anyway but wanted to ask him again about the penis pain. He said that the penis pain I was experiencing wasn't really conducive with symptoms of
chronic prostatitis. I mentioned Peyronies, he looked at me again, and said it wasn't Peyronies. I said are your sure, he said yeah. He felt no
plaque or scar tissue along the shaft. Asked me about trauma, I said not that I know of. I normally hang to the left when
flaccid and I have a natural upward curvature, always have had that and nothing I could see during sex made me think anything looked any different. I did tell him as the pain increased I was more conscious about it during sex and so I felt like there were times my erections weren't full because of the pain. He offered me the doppler test which sounded crazy at the time. I hadn't read enough to know at the point that thats an option so I dismissed it. Otherwise he said I'm not sure whats wrong. Your not really presenting with someone who has Peyronies, he said . I left pretty dejected. Found another urologist in Jersey this time and went to get a second opinion, this was the first week in January.
The second urologist, listened to everything I had gone through, the whole thing. The only test he performed on me that the first guy didn't was a bladder sonogram and said it showed I wasn't evacuating completely. After the whole visit he thought that the two issues, penis pain, and urinary issues are unrelated even though they occurred at the same time. He had no good answer for the pain but physically examined me and also concluded that it wasn't peyronies. He said for the urinary issues that I should try flowmax even though I tried rappaflow and it didn't work... that the flowmax might. The alternative he said was that I could severely limit certain dietary things and see if that works. Ie: limit coffee intake, limit alcohol, drink 8-10 glasses of water today, maybe try some circumin for its anti-inflammatory properties and also recommended coq10 as well. He said after a month if that works you should see an improvement in urinary function. He had no answer for my penis pain. Considering at this point I really cared way less about the urinary issues and much more about why my penis hurts I left feel dejected again. The only thing he mentioned I could try was not having sex for a while and see if the pain got better. When I asked how long since the longest I have ever gone is about a week...he said try a month and see if there is any improvement. Because I have frequent sex, I hardly EVER masturbate anymore. Thought that was worth mentioning.
I decided to go see my old primary care physician who recommended me to a urologist he knows in Brooklyn but began to read more about Peyronies and the more I read the more I think I NEED to see someone who's more familiar with this disease so I can some definitive proof that I either have it or not. 3 weeks so far of 8-10 glasses of water a day, 400mg of cur cumin, 100mg of coq10 and a much stricter diet limited simple carbs and no sex. No real change in urinary function yet. I still go 8-16 times a day but I do notice when I'm out to dinner or just not at work or home, I go less. I am down to getting up only once a night to go to the bathroom but interestingly enough, because I'm not having sex, I seem to be getting night time erections a lot more, not full ones but like half-stiffies lol. I know this because it wakes me up with the same kind of discomfort I have during intercourse, so I know its not going away even without abstaining from sex, but I can't be sure of how much discomfort because I'm only half hard...I only get fully hard during sex... No change in appearance or anything like that, and I'm really looking which might be a problem as well. February will be 7 months since both symptoms started and 3 full months since the scope when the penis pain got worse. I have absolutely no pain when
flaccid but after sex my penis does feel "sore" in the shaft, not the head, for a day or two.
I work for the city and although I'm supposed to have great insurance I'm having trouble finding a specialist in NY/NJ that takes my insurance (Emblem/GHI). I called both Dr. Peter Stahl and Dr. Alex Shteynshlyuger, both do not take my insurance. I found two guys who may or may not be specialists in Peyronies but do take my insurance and see new patients, Dr. Christopher Anderson and Dr. Sven Wenske, both board certified and affiliated with NY Presbyterian. I'm gonna call Monday to see if I can see one of them. I found another Doctor, Dr. Kashanian who takes my insurance and seems to be a specialist. I'll try him as well on Monday.
Well thats my story up to this morning lol. Again, please forgive the lengthy post but I think I needed it. Please ask me any questions if you have any.
I have a few if anyone can help me:
1. Is my specific situation anything anyones heard of?
2. Does anyone have any other doctor suggestions in NY/NJ where they have had a good experience?
3. Should I keep retraining from having sex longer than the 4 week window?
4. My symptoms seem to suggest something is up, but I only seem to have penis pain as one of the symptoms without presenting any of the other ones associated with Peyronies.
5. Has anyone been miss diagnosed by a urologist? so far, bot urologist, although not specialists said no Peyronies just by doing a visual/physical examination
6.Should I increase my coq10 mg intake? I take the one with ubiquonl, 100mg once a day.
7. Should I add any supplements? I'm a little Leary on the vitamin E because of its link with prostate issues which I have.
8. Anyone have any experience with the Urologist Center located in Manhattan?
9. Can you only feel
plaque/scar tissue when fully erect? or can you feel it when your
flaccid. Neither doctor nor myself feel anything
flaccid.
10. If not peyronies, anyone have an idea?
11. Anyone heard of any of the three doctors I mentioned?
I think thats about it guys/gals.
Thanks in advance for any replies. I feel like the length of this post will scare people away lol.
Best,
Vin
Author
Topic: Un-diagnosed new guy here with my story and maybe a doctor Rec. (Read 3650 times)
February 15, 2012, 04:00:29 PM