Peyronies Society Forums

Please login or register.

Login with username, password and session length
Advanced search  

News:

Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
https://www.peyroniesforum.net/index.php/topic,17819.0.html

Pages: [1]   Go Down

Author Topic: Un-diagnosed new guy here with my story and maybe a doctor Rec.  (Read 3651 times)

0 Members and 1 Guest are viewing this topic.

climbinglife

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 19
Un-diagnosed new guy here with my story and maybe a doctor Rec.
« on: January 20, 2018, 11:02:23 AM »

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

Logged
Peyronies diagnosed at age 40. 23 degree upward curve, 1/2 to an inch loss in length and some girth. 2.5-5mg Cialis daily. Staying alive.

Paolo

  • Major Contributor
  • ****
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 945
  • 59 Year old with stable Peyronie's
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #1 on: January 20, 2018, 11:39:40 AM »

Welcome Vin and what an absolutely brilliant post.

Two things, be careful with whey powder, look for undenatured whey, yes it is more expensive but worth it, secondly try adding Magnesium supplementation to your diet, either Mag Chloride or Mag Taurate.

I hope you don't have peyronie's and good luck to you  :)
Logged
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

climbinglife

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 19
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #2 on: January 20, 2018, 11:48:56 AM »

Paolo,
Thanks man, I appreciate you taking the time to read through it.
I stopped the protein supplement entirely back in august after the initial round of blood work. Freaked me out so I'm just getting it from foods now, lean meats and vegetables.

How much magnesium do you think? I'm getting 140mg from my multi vitamin.

I hope I don't have it either. This seems like an invaluable forum which is why I joined, seems to be a rare thing these days on the interweb lol.
Logged
Peyronies diagnosed at age 40. 23 degree upward curve, 1/2 to an inch loss in length and some girth. 2.5-5mg Cialis daily. Staying alive.

Paolo

  • Major Contributor
  • ****
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 945
  • 59 Year old with stable Peyronie's
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #3 on: January 20, 2018, 12:03:49 PM »

Hi Vin, 140mg is not bad. I take Magnesium Taurate (250mg) which is supposed to be 'heart' healthy.

Magnesium Chloride salt flake baths are wonderful too for relaxation, and sleep.

Before starting heavily on any supplementation use website Independent Analysis on Supplements & Nutrition | Examine.com you can type in any considered supplement and read up about possible interactions with other supplements or medications.
Don't spend a fortune on supplements (easy to do LOL) and do your research, if there is any positives  :o from peyronie's is that most forum members improve their diets immeasurably.

Take it easy on those bike rides, I row myself and do 30 to 40 thousand metres a week, rest days inbetween (important to note about any strenuous exercise)  :)
Logged
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

climbinglife

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 19
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #4 on: January 20, 2018, 02:31:33 PM »

Thanks man I'll look into it.

looking around I stumbled upon people who take Glucosamine/MSM/Chondroitin and a link to Peyronies but nothing definitive. I obviously take it for joint health and have been for about 2-1/2 years. Any truth to this? Its amazing what reading one thing will do to your psyche :(

I have to find a doctor who specializes in this that takes my insurance so I can get correctly diagnosed.
Logged
Peyronies diagnosed at age 40. 23 degree upward curve, 1/2 to an inch loss in length and some girth. 2.5-5mg Cialis daily. Staying alive.

betterbend

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 235
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #5 on: January 20, 2018, 03:03:32 PM »

I am in NY also.  I have GHI insurance and I see Dr. John Mulhall.
HE is a sexual medicine specialist at Sloan Kettering (office on e 60th street).  He is a leading specialist in Peyronies.  I would contact his office.  They did first want a diagnosis of Peyronies from my urologist, but it sounds like you may have a more complex issue.  Good luck
Logged
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

Paolo

  • Major Contributor
  • ****
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 945
  • 59 Year old with stable Peyronie's
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #6 on: January 20, 2018, 03:14:32 PM »

I would not unduly concern yourself about Glucosamine/MSM/Chondroitin, I think you can put your mind at ease as to you linking peyronie's.
Glucosamine is, unfortunately, not widely studied as science can't make money from it, therefore the medical community ignore greatly supplements and there possible effectiveness, no money for them.
Logged
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

TonySa

  • Major Contributor
  • ****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 4885
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #7 on: January 20, 2018, 04:30:39 PM »

Vin, did any of the docs offer ultrasound to rule out peyronies?  You might ask if they can’t figure out what’s going on.  I’ve read diclofenac sodium gel can gel w the pain and also acts as an anti-oxidant for the inflammation.  Just some thoughts.  Also, saw palmetto can help w prostate problems, I trust life extension formulas as they are pharmaceutical grade so you know what you’re getting.
Logged
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

climbinglife

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 19
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #8 on: January 20, 2018, 05:00:30 PM »

I am in NY also.  I have GHI insurance and I see Dr. John Mulhall.
HE is a sexual medicine specialist at Sloan Kettering (office on e 60th street).  He is a leading specialist in Peyronies.  I would contact his office.  They did first want a diagnosis of Peyronies from my urologist, but it sounds like you may have a more complex issue.  Good luck

Thanks for this rec, I have read on here that Dr. Mulhall has some conflicting reviews. I'll add him to the list.

Regards,
Vin
Logged
Peyronies diagnosed at age 40. 23 degree upward curve, 1/2 to an inch loss in length and some girth. 2.5-5mg Cialis daily. Staying alive.

climbinglife

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 19
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #9 on: January 20, 2018, 05:05:05 PM »

Vin, did any of the docs offer ultrasound to rule out peyronies?  You might ask if they can’t figure out what’s going on.  I’ve read diclofenac sodium gel can gel w the pain and also acts as an anti-oxidant for the inflammation.  Just some thoughts.  Also, saw palmetto can help w prostate problems, I trust life extension formulas as they are pharmaceutical grade so you know what you’re getting.

Neither urologist reccomened an ultrasound of my penis. I wasn't even aware you can get one. The only procedure offered by the first urologist was the doppler exam where they give you the needle to get an artificial erection. I hadn't done any research at that point so when he explained it to me, I was like no lol.
I would totally get an ultrasound of the penis if I knew that was available.
I like the LE stuff as well and I've been taking a prostate supplement that has saw palmetto in for the last 3 weeks. so far no real change. I just started coq10, 200mg and curcumin, 400mg.

I wonder why neither urologist offered the ultrasound? I'm assuming it would show plaque/scar tissue if there was some?
Logged
Peyronies diagnosed at age 40. 23 degree upward curve, 1/2 to an inch loss in length and some girth. 2.5-5mg Cialis daily. Staying alive.

TonySa

  • Major Contributor
  • ****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 4885
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #10 on: January 20, 2018, 07:59:19 PM »

Oops, I think it’s the same as Doppler.
Logged
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

climbinglife

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 19
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #11 on: January 21, 2018, 07:53:48 AM »

Oops, I think it’s the same as Doppler.

Ohhh, ok lol. Can anyone confirm this? I'm sure if a simple sonogram was available one of the two urologist I saw would have done it. The doppler exam makes me nervous but if it is indeed the only way to be sure, then I'm absolutely willing at this point.

Another question I have is for the guys who have been officially diagnosed, are your symptoms visual when flaccid? Meaning can you tell you have it when your not erect? Or is everything normal looking until then? I mean if I have no visual change after a year or more, does that mean anything?
Logged
Peyronies diagnosed at age 40. 23 degree upward curve, 1/2 to an inch loss in length and some girth. 2.5-5mg Cialis daily. Staying alive.

Crookid

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 30
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #12 on: January 21, 2018, 09:56:14 AM »

“ Qoute Another question I have is for the guys who have been officially diagnosed, are your symptoms visual when flaccid?”

Vin,
I have some plaque that can be felt when flaccid and they are tender/painful. Also  my unit doesn’t  hang the same when flaccid as it did before Peyronies Disease. It is shorter and more rigid. I’ve had this disease for about 8 months. I also have been taking Glucosamine and condroitin. Have been for 15 years or so but like others have said I couldn’t find any real evidence it caused Peyronies Disease and when I stopped taking it my knees were killing me so I resumed taking it.
Good Luck and keep posting updates.
Logged

betterbend

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 235
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #13 on: January 21, 2018, 10:48:14 AM »

Ohhh, ok lol. Can anyone confirm this? I'm sure if a simple sonogram was available one of the two urologist I saw would have done it. The doppler exam makes me nervous but if it is indeed the only way to be sure, then I'm absolutely willing at this point.

Another question I have is for the guys who have been officially diagnosed, are your symptoms visual when flaccid? Meaning can you tell you have it when your not erect? Or is everything normal looking until then? I mean if I have no visual change after a year or more, does that mean anything?

A Doppler is very similar to an ultrasound.  Both tests are completely painless.  As to why a urologist didn't do an ultrasound, it  a good question.  If you suspect Peyronies, then see somebody who specializes in that condition.  My regular uro kind of blew it off when he found the plaque, told me to rub vitamin d on it.  Once I found a  Peyronies  specialist, I got a full work up including an ultrasound, and ultimately a treatment plan with xiflex.

As to Dr. Mulhall, I have been happy with my experience at his office thus far.  I think he might be a bit more blunt when he speaks, but he gave me an my wife all the time we needed when we sat with him after I had the diagnostic work up.  I also called the office 3-4 times after and had a PA return my call each time.  HE has a busy practice so perhaps the personal attention at other offices might be better, I don't know.  However, I know a lot of people who work at Sloan Kettering, and even worked their my self for a short period of time, they attract and hire top people.  EVerybodies experience is different, but I would at least make a first appt, along with other Peyronies guys and then make your choice, that is how I did it.
Logged
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

popopo

  • Major Contributor
  • ****
  • Country: nl
  • Offline Offline
  • Gender: Male
  • Posts: 685
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #14 on: January 21, 2018, 11:45:16 AM »

I rarely see it mentioned here, but my urologist told me pelvic floor tension can cause the symptoms you describe.  I have it myself and I've been told that working on relaxing those muscles can help getting better erections. I think you might have it since you mentioned having pain in your testicles too. If your pelvic floor is tense you can get symptoms like testicle pain, erectile dysfunction, less sensitivity because of a lack of bloodflow to your genitals and even difficulties when going to the toilet. A firsr step would be to NEVER push when going to the bathroom and you could try kegel exercises. Heavy lifting in the gym can also increase muscular tension. I notice this is often overlooked, but I believe it's also the cause of what on this forum is reffered to as "hard flaccid or turteling". When your penis is damaged your pelvic floor might tighten as a reaction, but it also works the other way around. It's like a feedback loop. The chicken and egg story.
It's also the same group of muscles that cause a dog to put his tail inbetween his legs when it's stressed and not surprisingly stress is also a factor in humans. Some people build up psychological tension in their shoulders, but the same thing applies to the pelvic floor muscles. Of course this is just my two cents and for more information you could ask a fysiotherapist or your urologist. Hope this helps.
Logged
Age: 25
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

climbinglife

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 19
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #15 on: January 21, 2018, 02:36:18 PM »

Thanks betterbend, crookid & popopo, I'll add Dr. Mulhall to the list I have. I'm making all my calls tomorrow.

I've heard of CPPS as well as it does seam to mirror a lot of the symptoms I have, so I guess its something I can look at as well as getting a proper ultrasound/doppler test. Your not the first person to mention it to me especially since my penis issues coincided with my urinary/prostate issues. Could this be addressed my a physical therapist? Is that what you meant by fysiotherapist?

Just to be clear, those are two different tests? a regular ultrasound and the doppler exam where the needle goes in to artificially make the penis get erect.

Can someone also explain, "hard flaccid" to me or point to me where its been discussed before. There are instances where my penis feels more hard than soft in its flaccid state but not "hard" like when its erect. Doesn't hurt at all and is still bendy and flexible when flaccid.

Appreciate it guys.
Best,
Vin
Logged
Peyronies diagnosed at age 40. 23 degree upward curve, 1/2 to an inch loss in length and some girth. 2.5-5mg Cialis daily. Staying alive.

popopo

  • Major Contributor
  • ****
  • Country: nl
  • Offline Offline
  • Gender: Male
  • Posts: 685
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #16 on: January 21, 2018, 03:11:48 PM »

Yes, I meant a physical therapist. A urologist can feel it with his finger or you can get an electrical device that gives a clear indication of how much tension there is in rest, how strong the muscles are when you clench them and how fast your muscles relax after clenching. I personally had elevated tension in rest and it took slightly longer than average to return to relaxed state after clenching as well. In both cases you'll have to get over the embarassment cause it will be anally inserted, but it doesn't hurt and if it helps it's worth it for me. Prostate exams are probably more painfull than this.

Hard flaccid is when your penis is hard like its erect, but it's flaccid and often looks shrunken. It's compareable to the kind of flaccid you have when taking a cold shower, it's just more prolonged and when it was at my worst (short time after i juring myself with jelqing) it also caused pain, numbness and felt cold to the touch.
Logged
Age: 25
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

climbinglife

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 19
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #17 on: January 21, 2018, 04:07:43 PM »

[Full quote removed - Please check forum rules for quoting] - Admin

Got it, thanks. I'll look into PT maybe as well. I understand the Hard flaccid thing now thanks. I def do not have that. of course I get shrinkage when its cold water and occasionally its say more hard than other times when flaccid but not to the extent your describing. I did mention a few times though about the tip of penis, feeling cold to the touch. He dismissed that as nothing. interesting.
Logged
Peyronies diagnosed at age 40. 23 degree upward curve, 1/2 to an inch loss in length and some girth. 2.5-5mg Cialis daily. Staying alive.

betterbend

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 235
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #18 on: January 22, 2018, 10:34:50 AM »

[Full quote removed - Please check forum rules for quoting] - Admin

I am not sure if you are thinking of a cystoscope, where they insert a probe into the urethra to examine the bladder.  The ultrasound I had did involve an injection (3 of them) to get an erection, and then I needed two injections after to get soft again. I did feel a bit like a pin cushion afterwards, but it isnt as bad as it seems.  For me personally, having a definitive diagnosis and knowing the issues involved was well worth the small amount of pain.  I dont look forward to the revaluation after the first two rounds of xiflex, but I would rather know what the heck is going on.  Anyway, it make for some interesting stories when I tell people ...
Logged
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

climbinglife

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 19
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #19 on: January 22, 2018, 06:42:30 PM »

Yeah I had the cystoscopy which was clear of anything wrong with both my bladder and urethra. Ironically it was after this procedure, that the erection pain got worse. Maybe I had sex too soon afterwards (I think about 4-5 days later) and I just inflamed it? Wishful thinking I know.

The procedure you describe is prolly what will confirm or not wether I have this or not. After some more reading (which I feel is starting to do more harm than good without a diagnosis) I seem to have a fear amount of the symptoms associated with CPPS.

Working on an app. with Dr. Mulhall now but he is supposedly looking over my past records to see if I warrant his time   :-\ I was told there are other doctors in the practice that can also help if he doesn't't want to look at me. Not sure how I feel about that.

I'll keep you guys posted. Gonna take a break from reading this stuff, its weighing on my mind.

Thanks for all the advice everyone.
-Vin
Logged
Peyronies diagnosed at age 40. 23 degree upward curve, 1/2 to an inch loss in length and some girth. 2.5-5mg Cialis daily. Staying alive.

NeoV

  • Major Contributor
  • ****
  • Country: jp
  • Offline Offline
  • Gender: Male
  • Posts: 2176
    • Neoman
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #20 on: January 23, 2018, 06:44:16 AM »

Sounds like my issues to the T. Always was active, but started peeing 10 times a night and constantly, then came pelvic pain, Peyronie's, and the works. It was all related to insulin resistance, due to a complex carb based diet. I ate brown rice, broccoli, and fish every night, lots of rice. Now I eat veggies and meat, and that's it! I don't pee all the time anymore either and the insulin resistance is gone. Nothing is perfect, but my life is a whole lot different now.

climbinglife

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 19
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #21 on: January 23, 2018, 03:56:41 PM »

Interesting. I guess I'm gonna find out whats up soon enough.

Dr. Mulhall is willing to see me, on the 15th of Feb.

I'll update the thread when I know something.

Best,
Vin
Logged
Peyronies diagnosed at age 40. 23 degree upward curve, 1/2 to an inch loss in length and some girth. 2.5-5mg Cialis daily. Staying alive.

betterbend

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 235
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #22 on: January 24, 2018, 12:13:36 PM »

Glad you got an appt.  Make sure they take your insurance, I am under UFT with GHI, and they did.  It was a standard office co-pay for the visit and I think about $50 for the diagnostic work up once insurance was applied.  I will see what the costs of Xiflex treatments are to me, once insurance is applied.  The cash cost from the office is ridiculous, I am keeping my finger crossed that the insurance coverage is good for the Xiflex.  Good luck and let us know how the first visit goes. 


Logged
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

climbinglife

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 19
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #23 on: January 24, 2018, 07:04:45 PM »

I will man, thanks for the heads up.

UFT as well ;)

Your paying out of pocket first for the injections, and then waiting to see if the GHI will cover? or they approved you for the injections? How many are you supposed to get anyway?

Logged
Peyronies diagnosed at age 40. 23 degree upward curve, 1/2 to an inch loss in length and some girth. 2.5-5mg Cialis daily. Staying alive.

LWillisjr

  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 3063
  • 65 y/o - 13 yrs Peyronies free
    • My Peyronie's Story
Re: Un-diagnosed new guy here with my story and maybe a doctor Rec.
« Reply #24 on: January 24, 2018, 07:45:00 PM »

I need to close this topic as an introductory post, it has exceeded the 10 post limit. Please feel free to post questions in other areas of the forum.
Logged
Developed peyronies 2007 - 70 degree dorsal
Traction/MEDs/Injections/Surgery 2008
65y/o  13 years Peyronies free
My History
Pages: [1]   Go Up
 

Related Topics

  Subject / Started by Replies Last post
0 Replies
11216 Views
Last post February 15, 2012, 04:00:29 PM
by mike67
9 Replies
4895 Views
Last post November 05, 2013, 01:27:20 AM
by skunkworks
2 Replies
842 Views
Last post October 02, 2021, 10:32:10 AM
by PeyroniKirai