AntCraven's Propecia story

Member Stories
#1

This is my story: Anthony Craven

VIEW HORMONE TEST RESULTS (PDF file):
propeciahelp.com/forum/download.php?id=7

I started taking Propecia back in 1999 I am not sure what day as at the time it was the day I said goodbye to my receding hairline and the piles of hair in my drain everyday. Like everyone else my dermatologist was very eager to push the new drug saying that there were no side effects and virtually no risk.

At that time in my life I had just finished dating a few girls (not at the same time) and was looking forward to bettering myself. Anyway in the previous relationships things seemed to work well. I used to drink a lot but not more than the typical 20 something year old and still used to be able to have sex.

At times I had problems with condoms but in retrospect I used to buy the thickest and strongest ones so a loss of sensation is probably typical. Ok so I begin propecia and I remember testing my body for erection ability at times after I started taking it and things seemed fine.

I still woke up with morning erections and when I had sensual thoughts I would get physically excited. All things seemed great. Anyway it was at this point that I decided to go to grad school and concentrate more on studying than on dating.

I didn’t really date anybody until sept 2002. It was at this time that I noticed I had some problems. I no longer could achieve an erection as easily as I once could. It didn’t last as long and at one time I could have sex a few times a night and at this time my refractory period was crazy. I would be spent for a day after I ejaculated.

Anyway I quit propecia and my face became very oily and I started to get cystic acne. So after breaking up with my girlfriend I decided to go back on Propecia. Decided to get rid of the acne and thought maybe I was just getting older and that being the reason for my loss of sexual function. I continued on Propecia until December 17th 2004 at which point being in a new relationship I quit cold turkey.

I went to a urologist and he said it was nonsense that propecia could cause this and that it must be in my head. He gave me a prescription to Levitra and sent me out of his office. Me and my girlfriend used the Levitra with much success until November 2005 at which point it seemed to have lost its effectiveness. I then more actively pursued therapy and have most recently gotten a MRI of my pituitary.

Anyway on January 20th I started taking 6 OXO to raise my Testosterone after a blood test of 358 and a few weeks later I ran a 550 at the same test.

Starting in February I began using Testim Testosterone cream daily it’s a 1% tube and contains 50mg of testosterone.

It seems to go on well and since then my libido has increased a bit with more luck in the bedroom. Things are not great as I still fail from time to time but they seem to be working better with the higher testosterone.

My Symptoms

Erectile Dysfunction

Loss of Libido

I developed a pull to the right in my penis sometime in 2005

Attention span is not what it used to be

Early on I had a disconnected feeling in my penis this has since gone away

I tried many many herbal remedies with the most effective being Licorice. I quit taking zinc starting this year though I still get some in my diet.

Tried Penis rings and penis pumps with little success

Viagra, levitra and Cialis still fail to work.

Noctural erections are there though not very strong and I usually awaken with one about 4 times a week now as opposed to once a week when I stopped Propecia

After I stopped propecia all went to hell. I had no erections, no feeling and no sex drive for almost 6 months. My penis was very difficult to get erect with any medication.

#2

I will post my results from the rigiscan but overall it looks like I have noctornals throughout the night. However I have on average 70 - 80 rigidity at the base and only 40-50 % rigidity at the tip. So blood is flowing into the base but not making it to the tip. I get on average 4 to 5 erections throughout the night lasting about 30 minutes each. On the ultrasound I could not see the pics but it said blood flow was 21cm/s and 15.5 cm/s. After that it said abnormal flow follow up with melman. WHile I was getting the procedure done they said something about a fistula. I am getting higher res images of the ultrasound mailed to me but I think the next step has to be an angiogram. has anyone had one of these?? what does everyone think? For those that had a rigiscan and the docs said its normal did you get similiar rigidity in the base and in the tip.

#3

hey guys I found out the other day that I have impaired blood flow to the penis. THis is the reason for my ED. I know others have had the same thing. I am hopeful since I heard the word fistula in my ultrasound but it didnt say anything on the techs notes to melman. All is said was abnormal blood flow with pics I cant understand. Anyway I know this is the key and I am close to figuring this all out.

I know others have had low blood flow and have had it verified with ultrasound. What was your next step after. How many have gotten angiograms or other test done after. Has anyone recovered after being at this point and working on blood flow problems?

I am willing to get a angioplasty and whatever it takes to get blood flowing in the levels is should down there.

ant

#4

Yes I certainly think bloodflow seems like a rational reason for our problems. I certainly don’t feel like enough blood gets down there for things to work fully. But there are god knows how many reasons that blood is not flowing properly and maybe they are not all fixable…I really don’t know. Further to this my doppler ultrasound suggests I have normal blood flow - i still wonder about this somewhat though.

John has also had it suggested he gets an angiogram but has not done this yet. I think it is quite a big deal of a diagnostic test and may not pinpoint the issue. But it may be worth pursuing this; we all need solutions and soon…

#5

well my intentions are to get a an angiogram. I already went to another urologist at NYU medical center. Probably one of the best urologist I have ever been to. Anyway he said my rigiscan looked normal despite the fact the tip only gets about 40 % rigid…huh!! anyway he wants to do another ultrasound and then an angiogram. I am going to another doctors on the NY’s best doctor list on the 21st and I am going to see what he says. ANd then melman comes back in december and I will see what he says. I am tired of all this and if surgery and an angiogram can give me a 50% chance of improvement then I am going to take that chance. If I have a low blood flow and it can be fixed or improved then I am going for it.

ant

#6

I think this is an excellent attitude Ant. It is worth taking the chance. The way I am feeling right now, if someone gave me a treatment option with a 50/50 chance of recovery or major improvement I’d roll the dice for sure…

#7

Hey Ant,

What is the doctors name at NYU you’re going to? I’m getting sick of Melman being so unavailable all the time. Even when he’s not on vacation he can’t be reached. It’s insane. And he prescribes me a medication and then I can’t ask him any questions or raise any concerns. Anyway, are you having any pain to go with your reduced blood flow? I had experienced a lot of pinching and tingling in my penis for a while (peyronies) which seemed to subside. Now recently I’ve been getting pain again but this time it feels more like a strain. One of the areas is the very bottom of the shaft where it connects to the body, close to the rectum. I’ve felt the area (which I have to feel through the scrotum) and there are a couple of lumps that are very sore and sensitive. It gets exacerbated when I flex the area during sex, etc. From what I’ve read and researched on older posts this doesn’t sound like scar tissue, or nodules. They’re not sensitive or painful, right? All of these things including the curving are on the left side. Anyway, I’m taking my test results from Melman and getting a second opinion. I see you’re already doing that. I’ve just gone to so many already I can’t bear to explain this whole mess to yet another doctor with no real answers. Anyway, good luck with your next visits.

#8

I have gone to a doctor at NYU urology associates called Dr. Andrew McCullough. He was quite good…wants to do another ultrasound but I am waiting to see a doctor robert Weiss at robert wood johnson as he is one of the best around. I hope I can get some answers. No I havent been feeling pain or anything like that.

ant

#9

Is it a risky test to get done? If not id say go for it. Sorry but i dont know anything about this topic.

#10

Dr Robert Weiss at robert wood johnson was a complete waste of my time. He was supposed to be one of the best but apparently one of the best at handing out oral medications cause he had no other answers. He was even unsure how to read a rigiscan or a ultrasound. Said its been about 5 years since he has done so. COMPLETE WASTE OF TIME. I wish he could read this. lol anyway I have to wait till Melman comes back and see what he says. I hope I can be fixed by him cause then my only other option is an IMPLANT. I can maybe get the good one that adds some length and I can have a second career in porn. :slight_smile:

Ant

#11

My tip is only about 50% suffused and the rest gets to about 80%. I’ve been off Propecia for 1.5 years now. Like you, I’m getting nocturnal erections, but I thought that with time and enough of them, my penis would eventually correct itself. However, this doesn’t seem to be the case, even with over 500 days of nocturnal blood flow behind me.

#12

The problem relates to a lack of N.O due to lowered dihydrotestosterone and/or elevated SHBG and reduced free testosterone.

Finasteride/Propecia does not cause a problem with blood flow, rather the problems are indictly due to the decreased vascularisation due to the above.

I have posted in the general forum- you might wish to view that.

#13

Guys Let me first tell you that i have been a member of this site for over 2 years. This site has helped me through many rough times. I may no longer be posting much on here as I have discovered my problem. THere is no cure for my problem but knowing what it is I can definattly say its not propecia which caused it. Propecia may have accelerated the problem from appearing as losing DHT my penile tissue changed but in no way did it cause my problems. For those of you suffering ED and you think it may be propecia please get checked out for everything possible.

the closing of my story.

I have been seeing melman and dr mccullough (NYU) he is a great docotor by the way. I have seen both doctors and had a doppler ultrasound done with both. Melman says that my blood flow is abnormal and I am scheduled for a angiogram on the 27th of this month. Mccullough did the most complete doppler ultrasound I could possibly imagine. i was standing up and laying down and he took over 40 pictures of the whole thing. The procedure was done by him and not a tech which made it ever better. Anyway it turns out that there are four arteries going into the penis. Two on top are called the dorsal arteries and two in the erectile chambers are called the penile arteries. I was born without penile arteries. Well somewhat. THey are there but they start a little ways in from the beginning of my penis. So blood is getting into my arteries and into my penis but it is leaking out into the area that has no artery and just being drained by a vein. Its crazy! words cannot describe how I feel. I had this underlying condition all my life and it only became worse when my testosterine dropped and I lost DHT from Propecia. Propecia is mass markerted assuming everyone is normal when in fact some people taking it are not and have no idea of their situation. Just for reference the penile arteries connect to the dorsal arteries just outtside the penis. In my situation they branch off from one another inside the penis and not outside. A small abnormality but this is responsible for blood leaking out and not being able to acheive or sustain an erection.

I was offered 3 choices of therapy. Injections, vacuum pump, or penile implant. I think I will have to choose the penile implant in all honesty. I have tried penis pumos and they are not good. Cold penis and no spontaneous sex. Pluse traveling with a pump can be embarrasing. injection therapy. Please who wants to jab themselves with a needle when they want to have sex. Can you think of anything worse to kill the mood of passion.

I am at the end of the line guys. I have been through hell and put my girlfriend through hell. Most likely we will break up as she sees no future if I have to rely on medical science to obtain a erection. The arteries may not be able to be fixed by surgery. My only hope for normalcy lies with melman.

I couldnt think of a worse case scenario. I am a little relieved as now i know the cause of my problems. but I am shattered over losing my girlfriend. Possibly never being normal as far as erections are concerned. Having to live with an implant and the possibility for complications or never having sex again. I actually went to a party this weekend and drank as if I had a purpose. Not the solution. I quess life goes on. With an implant 90 % of people are satisfied and the partners are satisfied. Being a young guy I wonder what the rate of partner satisfaction is. Most women and my girlfriend is very attractive can find a functional guy very easily, why would they want to settle long term with the possibility of so many problems.

in my case and only my case I dont want to cause arguments propecia accelerated an underlying condition it would have happened as my body aged anyway. note to all guys. Dont stop until you find an answer.

#14

Hey Ant,

Sorry to hear such negative feedback. My heart goes out to you man. I guess knowing it was something you were born with might make it easier to accept. It’s tough to think I did this to myself by taking a drug. Knowing it could’ve been avoided. I dream of turning back the clock. Too bad about your girl too. Don’t be so sure that there aren’t others out there that won’t be more understanding. Just hang in there. My wife was willing to stick it out no matter what. In the end it was me who left.

Is the idea that Peopecia exacerbated the condition something that Melman suggested? How exactly did it do this?

Question: can you achieve and sustain an erection with Cialis, Viagra or Livitra? I’d guess not with a leakage. I am able to so I’m hoping my case isn’t that severe. Plus I have the libido issue indicating something else which I think you never had a problem with. Anyway, I’m seeing Melman this Friday. Not sure what I’m going to accomplish. Nothing I suppose.

#15

Hey Ant,

Thanks for sharing your latest news with us… on the one hand it is not a good thing, but on the other at least now you can feel relief that you have found the cause of the issue and be on the path to correcting things… or have you?

Are you positive this is the issue, do the doctors have proof to show you or are they just trying to give you an answer because you have been looking and asking for one from them for so long? That would be my only concern at this stage… making sure what they told you is indeed 100% the truth…

If so, sounds like Propecia’s ill effects on yoru hormones may have indirectly exacerbated a condition (via low T/DHT after you quit) which could have shown up later in your life.

However, I do recall you stating awhile ago that you started to take Proviron (DHT) and Garlic Supplements to boost your T (isnt it at like 350 right now?). How is that working for you??

Have you tried or suggested TRT to the docs? Or… correct me if I’m wrong, perhaps you’re already on it… either way, if you got your hormones back in range maybe you’d regain some decent function and would not need surgery?

Just trying to offer alternatives before you decide to commit to such a decision.

Thanks for all your posts over the past 2 years, my heart goes out to you and I hope you can finally have some peace with whatever you decide to do. Irregardless of what you believe right now, if your girlfriend does decide to break up with you over this… THERE WILL BE OTHERS. Trust me on that, do not give up hope.

You have one life to live, as much as this stuff sucks you can’t let it destroy you as a person. You’ve got a lot of resolve, and if this is one of life’s cruel tests, hold your head up high cuz you passed it with flying colors.

Hope you will continue to stick around and update us with your progress with hormonal therapy or surgery. Best of luck to you Ant!!! And take care.

#16

thanks for the replies guys. I have been taking the proviron and the garlic. Garlic seems to be helping as I no longer have night sweats and my face is more oily. I cant say with any certainty as I have not had a testosterone test done but I can say I feel better somewhat and think it is helping. I usually take proviron a few days then lay off it for a week or so. Just want to take it to spur my body into maybe more testosterone production. I had TRT for a while and mentally I felt better. I had more spontaneous erections but was unable to keep them. Even on levitra, cialis I can get a erection but I cant keep it. This is perhaps the most frustrating part. As I can get a erection with my girl but then we go to use it and I lose it. Its so damn frustrating. Even with a cock ring I lose the erections so I have to put two on and then my penis becomes cold and that is a major draw back. Plus putting on two sometime I cant sustain an erection long enough to do so.

For me the thought of a penis implant sounds wonderful. If I could be assured no problems after and a penis size comprable to what I have now. That would make me quite happy. I have read papers where 50 percent of people with implants still manage to have minor erections and tumescence after the surgery and in a small number probably 10 percent they can still have normal full erections with am implant. If I was one of those then I could use the implant when I wanted to penetrate and still have some normal function.

The possbility of losing my girlfreind is high. I dred the thought and hope that when I get this resolved I can pick up the pieces of my life and move onwards. There are so many things I would like to do. I pray that we can make it through to see this issue resolved. What makes it worse is that I want to have sex every day but my body is not allowing it to function. After cancer its so much worse and I havent had sex in 2 months…ugh, but the drive is there. It would be easier to deal with if I had no libido or if I cheated on my girlfriend and this was the reason for our break up.

I only hope that if i do lose her and I do go through with the surgery that there are people out there who would still want to have a relationship with me. Its hard to imagine there being others when I am so involved and in lovr with my current girlfriend.

#17

listen ant… i can tell your really emotional about this. its not the end of the world. dont jump into any type of surgery or implant. you might regret it. really take a few years to think about this before you make a decision for the rest of your life. like you said, 90% of people are happy with their implant, but 10% are not. you might be in that 10%, just like we are in the 1% of propecia users with long term side effects.

talk to your girlfriend. if all she cares about is your boner, then the relationship wasnt going to last anyway. find a girl that loves you for who you are!

and get a 2nd, 3rd and 4th opinion. youll find that almost every doctor tells you something different.

#18

how are things with you…did you see melman…what did he say??

I had a angiogram on the 27th at melmans place. It was a ok procedure. Not very painful. Though scary and probably expensive. I was in the hospital all day and as a resul the tech told me that my pudential artery is smaller than it should be and bypass surgery can fix my problem. I am having melman go over my ultrasound images again and he is going to get back to me.

Either way I can sense a fix soon…arterial surgery or a implant.

#19

Hey Ant,

Got a second sperm analysis. Poor. Poor mobility, poor count. Saw them myself, they looked dead. He doesn’t know why or from what. Has this been common among the rest in the group? I told him I wanted to retake the Doppler and he said OK, he’d book it. No word. Asked again for my test results, still nothing. He said to stop taking the Requip which I have. Otherwise, he said he doesn’t know what to tell me. Maybe I’ll try Mccullough. I’d rather find a good endo. Have you seen any you like?

I think I’m going to just have to get used to the idea that I’ll need a drug to have sex. Depressing.

Good to hear you’re getting to the bottom of your problem. At one point after looking at my doppler Melman mentioned possibly doing an angiogram. The next visit he said he spoke to the tech who said he remembers seeing better flow than the numbers showed. This would have been at least a month later. How can he remember such a thing? Anyway, good luck with which ever procedure you choose. Melman mentioned bypass having a 50% chance of success, no?

#20

well my meeting with melman is set for the 19th. I think on that day I will know which avenue I am going to take. yea arterial surgery can range from 50 to 70 percent depending on what paper you read or who you ask. The penile implants have a high rating 95% of function after 5 years which is much higher than the odds with arterial surgery. Dr. McCullough told me that in a good group of patients who recieved penile implants that they were still able to have tumescence after the implant naturally. He mentioned something about having a technigue to insert the device which compresses the penile arteries and does not destroy them. At this point whatever melman suggest is going to be my course of action. Medicine does not work to well when you are having blood flow problems so I unfortunately cannot go that route I have injections, surgery, implant or pump as my options. the first two are ok with me. I refuse to inject myself before hand…taking a pill is bad enough.

I am glad you are getting the ultrasound done again. Melman believes whatever the techs say to him which is not to efficient. McCullough does all the test himself. He had a tech do some stuff but he was in there for a good deal of time while getting my ultrasound and if I had to pick which doctor I prefer it would have to be McCullough. He didnt think I was crazy mentoning propecia and he took his time to talk and explain things to me in a simple manor. I think he is the best doctor I have ever been to. As far a endo’s I had one at NYU but was not very happy after many test everything was in range so they had no answers. Propecia made my T levels crash and as a result my underlying condition of bad blood flow became exposed. If I didnt take T or get testicular cancer my T levels would be high and this probably wouldnt have happen till much later in life. Lowered T levels change the tissue in the penis to more collagen based which is not a bad thing but if you have a underlying condition it can be disasterous. If there is a medical reason for your decreased blood flow RK that could be half your battle.