Copping & Help with ED

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love

I'm a 21 year old male. It's nearly the 10 month anniversary of my sudden onset of quirky boner problems, and I've just been so distressed about being an impotent young primate that I felt the need to 'join the community' and reach out for some advice or support.

About ten months ago, I suddenly couldn't get a full erection. Instead, I got these upward-curving partial erections with hourglass shapes that looked like there was a constricting band wrapped around the middle. As should be expected, I freaked out immensely and annoyed many doctors who told me everything was fine until I was able to get Pentox and Cialis prescriptions from one of them. Ten months later, there's been no improvement, and slight worsening, although its severity fluctuates.

Hopefully, I can get some speculation as to what's going on, what current and future treatments might help me, general advice, and existential reassurance to an otherwise healthy young man who's aging hopelessly in a sexless life.

A few months after my surprise, I worked my way up the urological ladder to see Dr Liu. By the time I met him, however, I was a bit in denial about my problem, and gave an optimistic assessment of my improvement, telling him that it had been getting consistently better since the injury a few months earlier. I think I was being too optimistic because I had only recently begun taking Cialis, and my entire family and medical support was telling me I was too young and imaginative. Later review of my extensive photographic documentation supports this claim. Anyway, I have a copy of my medical report, and will cite what I think is most relevant:

QuoteOperation Report
(Ultrasound) FINDINGS: "Both corpora cavernosa and corpora spongiosum appeared normal in shape, size and echgenicity. Both cavernous arteries were visible. In the area of tenderness, there was an increase of thickness of the tunica measuring 0.32 cm with an increased echogenicity. This most likely represents reaction to injury or early Peyronie's plaque. Examination of the tunica albuginea of the other part of the penis reveals no interruptions and no other abnormalities. There was no septal fibrosis and no calcifications."

Letter to Referring Urologist
PHYSICAL EXAMINATION: "...The examination of the penis reveals a circumcised phallus without skin lesions. Examination of the shaft of the penis revealed a tender nodule at the mid shaft of the penis. This could be an early case of Peyronie's disease or a case of traumatic injury to the penis. Ultrasound of the penis revealed a thickness of 0.32 cm in this particular area which, again, is indicative of a penile injury and fibrosis."

IMPRESSION AND PLAN: "For his problem I recommend that the patient take pentoxifylline for three to six months to stop the progression of the disease and prevent any further scarring. Regarding his erectile dysfunction, I believe that he will gradually recover and will no longer need phosphodiesterase type 5 inhibitors in the future."

This prognosis sounds pretty good, and I left the appointment reassured, thinking that I would gradually recover with the Pentox. However, many months later, things have not improved. I didn't describe the symptoms in detail to Dr. Liu, which I believe contributed to such an optimistic report. I plan on doing so in my follow up. In the meantime, I'm hoping some of you can help me out.

Much like before, my penis is very inflamed after any kind of action, constantly hurting, and is having a lot of trouble getting erect on any amount of Cialis. There definitely seems to be something that his ultrasound didn't identify, because my penis points straight upwards (abnormally so), curves very slightly upwards, lacks all flexibility (I can barely bend it downwards whatsoever), feels weak (hard to explain, almost like it buckles a bit), and there seems to be something cutting off the blood supply at the very, very base; where my penis stops being a penis. I can't masturbate with zest anymore, or I'll cause myself too much pain and inflammation. Even if I do so very softly it will hurt and grow numb. I will not try sex until this inflammatory period stops. The texture and color of the base of my penis's base is different from the rest, seeming thicker, rougher, whiter, and bumpier. One urologist told me these were hair follicles, but I'm a bit skeptical.  There are other abnormalities and inconsistencies that are hard to describe, such as the fact that my penis also seems to be a bit twisted when erect, as the line that runs down the underside veers off to the left. Also hard to explain, my testicles seem to be completely oblivious what my penis is up to. Like they'll remain completely loose and hanging while I'm erect, and there seems to be a cut off point between them my penis. My theory is that there's some sort of scarring at this point that's cutting off the bloodflow.

I've been taking a full PAC regimen, and trying to make sure I get daily erections. I'm hesitant to use traction or VED's though, because it seems like anything I do it inflames it even more. My non-Liu urologist told me that Xiaflex didn't look like the most promising treatment from what he's seen, so I see a future that's very, very bleak. Still, I'd at least like to delude myself into thinking I'm doing something. Any advice or speculation as to what's going on would be very much appreciated.




LWillisjr

The good news is you caught this early...  And you are obvisouly going to one of the best doctors. If you read the report carefully it states "Pre-Peyronies". Again indicating that you cuaht this early.

I would highly suggest you start a program of either traction or VED exercises. This is the best thing you can do to keep your condition from worsening.

As far as the erection issues, this is highly indicative or anxiety or worry. Taking Cialis or Viagra will hel bloodflow, but won't overcome the mental or anxiety isues. These drugs don't necessarily help you get and erection..... they help prevent it from going away. It is the mental worry at this point (along with the pain) that can work against you from achieving one.

Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

ant

Hello Every one Im new, many thanks for providing thisvaluable site and the important info it contains. My son of 25 yrs has bad ED for a couple of years due to an injury. He has a 1 degree bend too. He lives in Australia and I in the UK so I'm not there to help him directly. He has asked me to look into a VED He has been taking 5mg Ciallis but these are not helping now and he is considering going on 10mg. The tablets he takes seem to become ineffective after about 12 months. The trouble is 10mg is a lot more expensive than 5mg and it will become difficult for him,

Can someone please advise as to whats the best VED for him and if anyone has experienced their drugs stopping working after about 12mths and what they did about it. Thanks

newguy

There are a number of VED options, and I think others might be better placed to make a suggestion, but I use a pump from bostonpump.com , and I've never had any problem with it. However, it did take an awful long time to arrive. Around a month I think. Maybe that was the exception to the rule, who knows.  Have you noted down the curvature correctly? a 1 degree bend?

ant

Sorry to hear about your son's Peyronies Disease diagnosis. There are several members of this forum that live in Australia and have obtained a VED there. I am sure that one of them will jump in here and relate where and how they purchased their VED. The recommended VED by myself and others on the forum is the three cylinder VED. So, hopefully, one of our Australia members will answer your request.

Old Man

Could someone from Australia please comment re VED sales/recommendations there.

Iceman

hey old man - hope you are well - I bought my VED from the states as per your recommendation...not from here in Oz - - in fact I might just go and have a good ol pump now:)

Cheers
ice

sadBuddyInLife

I have an extreme case of dysfuction but it was caused by a simple masturbation that lasted about 5 secondds.

This happened in 2005. I'm 31 now.

So when i did 5 second mastrubation technique which is just puling the shaft as my hand wraps around the shaft...which is the usual way all guys do it

Anyways upon doind that POWWW. i felt an extremely painful pain that felt going through my penis.
From that point on i became impotent..and i had extreme aweful sensation through my penis and then also the foreskin started failing.My impotence lasted about 8 months. It was aweful. and i even wanted to suicide. but i didn't.
The urologists ignored me and would ridicule me saying that it was alll in my head because i wasn't bleeding or anything. they couldn't see it because the penis wasn't red or bruised

Luckly miraculously, my erections started coming back....i bought some herbal product and that helped me. I don't know if that was the cause but after taken that product for a while and refusing viagra(which doctor told me), my erections came back and strong.

But i realized i was no longer normal
-My penis is not bent, but as it starts erecting it goes to one side, This did not happen before
-I can't rub or touch the shaft much.. almost at all!!! if i do.. i get extreme pain
-sometimes erections can cause pain too
-sometimes when i go to the bathroom to do number 2.. even if i haven't done any masturbation or ejaculation i start leaking ejaculate or sometimes a big white blob of white  ejaculate. It's strange.
-This is very annoying and uncomfortable sideeffect too: After erection my foreskin remains behind the head of the penis...and even after the penis becomes flaccid it stays there and it's difficult to make it slide to cover the head of the penis. I now have a trick i discovered: Bend torso forward, slowly then quickly to trick it..by making the gglans shrink.. But sometimes it doesn't work very fast.. so it can take 1 minute up to 20..or sometimes hours...because i give up when i cant.And so the foreskin is left behind the glans if i can't put it back to where it belongs. that feels bad.
At night too.. i always get night/morning erections which means that all the hours when i'm sleeping at night the foreskin remains behind the head of the penis.

When i was normal it would automatcially slide to cover the glans after an erection, but that is no longer the case.

But i want to let you know though, that though this seems to be PARAPHIMOSIS.I've never had my foreskin swollen and I"ve not died yet. In Paraphimosis sometimes people get gangrene. but mine hasn't and It's already 6 years since i've had this.


This has been aweful
and knowing that i will never be able to have sex normally.(I ve never had a  GF yet)
I wish there was someway to fix the pain at least,, but there's nothing. Urologist dont' understand my problem since i was never bruised like in BROKEN PENIS.
So they never help me.

Any help?  And should i worry about Gangrene being that my foreskin always stays behind the glans for HOURS.

Also i wonder if the cause of all this injury couldve been the fact that I have a Marfan Syndrome type of body( And dr thinks i may have some form of marfan's synderome) and my tissues may be realy weak.
Because before being injured i once tried for a bit to masturbate the way most men do(grab and pulldown and up) and i felt some very strong pains..luckly i didn't  get badly hurt that time but still, i was surprised.

NOTE: I have a body that looks like that of Marfan's and i've been told i may have a marfan variant so if that's the case...that maybe the cause for the reason i got easily hurt to death

Is there anything that i can do to fix my pain or will I remain like this forever and unable to have sex. As far as i see it and from the pain that i have that never ends(and luckly it doesn't happen unless i start rubbing/pulling the penis), i will never be able to have normal satisfyingsex. throught these 6 years i've tried masturabation and it's risky. I have discovered a way to get orgasm by rubbing the tip of the glans without rubbing or pulling the shaft at all cause if i touch/rub/pull the shaft it's like the most aweful pain ever. But still this is soooooo limiting. i can't really do anything. And i haven't had sex with a real woman,, but if masturbation is impossible.. then obviously penetration with a real girl is impossible. cause the vagina is like the hand grabbing and pulling the penis.. so its obvious i would have alot of pain.

The interesting thing is I have erections though. and pretty normal erections, however, my impotence is not about NOT having erections.. it's about not being able to be touched or touch..because of extreme shaft pain.

Do you guys have any ideas on what i should do to get my sex life back or should i just accept the fact that i will never be able to have normal sex or even normal masturbation?    and what about my foreskin problem, do you think i will get Gangrene eventually or do you think my condition just created a mutation but the since the blood flow seems ok i shouldn't worry about gangrene, just have to put up with this weird foreskin?

jackp

The best advice I can give you is stop going to a general practice urologist and find one of the great male sexual function specialist. Unfortunately there are very few, maybe 3 or 4 in the US.

Jackp
http://jackp-penileimplant.blogspot.com/  

Skjaldborg

sadBuddyInLife23,

I will echo jackp's advice that you see a male sexual function specialist urologist to confirm what you have. I got Peyronie's at a young age (29) but it hasn't stopped my sex life and my now healthy one-year-old daughter was conceived while undergoing treatment. Find out what you have first and then utilize the options available. If it is Peyronie's ask for a prescription for Pentoxyfylline, which will help stop inflammation and pain.

As an aside, try masturbation with lots of lubrication. Try different things that don't hurt while still getting/maintaining an erection. You might have to make some adjustments but anything worthwhile usually requires some time and effort.

Best of luck,

Skjaldborg

LWillisjr

I can only echo what jackp and skjald have already stated. I don't think you are claiming you ahve Peyronies, but from what you described sounds like you certainly did some kind of stress or damage to yourself. General practice urologists deal with urinary an bladder issues. You do need to get to a male sexual specialist or Andrologist and get a proper diagnosis for your symptoms.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

fubar

5 second masturbation? Okay with a flaccid penis cool beans.Teach us the technic. I am sure we would love the escape.

Fubar

BrooksBro


I have reached the point with my Peyronie's that I again have an adequately firm erection, at least when taking viagra and using a pump and tension ring.  I often have night time wood, at least briefly.  The negative side of this is that when fully erect, the curve is closer than ever to 90 degrees (upward).

With this curve, it is difficult to penetrate my wife.  Lately, it has become a significant struggle, with considerable frustration and fear of failure on my part.  When I finally get it in, she says it is not uncomfortable to her.  I cannot say the same.

I continue to take Pentox and other OTC supplements.  My curve is well beyond what can be resolved by the Nesbit procedure.  Excision and grafting are not reliable enough for me.  An implant is my only permanent solution, but it is not covered by my medical insurance.

I am at the point that I am ready to give up on penetrative vaginal sex and suggest oral or mutual masturbation, perhaps with a dildo for her pleasure.  If that meets with satisfaction, maybe a hollow strapon is in our future (anyone recommend one and a harness?.

I would like to hear from any other members who have chosen this route.

bert

Brooks I read your post and unfortunately I have no real sound advice to offer you. Would they attempt a Nesbit only to correct partially, maybe to 45 degrees? Just a thought. I feel for ya and keeping you in my thoughts - Bert
Saint Hubbins
"He was the patron saint of quality footwear."

bert

Also worth saying, it's crap like this that makes me so infuriated with health insurance. Sure, collect outrageous premiums for decades and then deny anything that may in any way relate to sexual health because it's clearly elective, and certainly it's not one of the more important factors in overall health?!?

My cialis is full priced for this reason, I don't have ED, and trying to explain that it is a treatment for a condition is completely futile. Brooks, I think I saw somewhere that Jackp got his implant through medicare. Is that an option for you in a few years? Again, I feel for ya - Bert
Saint Hubbins
"He was the patron saint of quality footwear."

KAC

I was at 90 degrees for a while as well.  It did get better in the last 9 months--less than 45 now.   And sex was a struggle for a while, but once we tried out various positions we got used to it.  My wife and I did start setting more time aside for sex (like on an afternoon off) which took some of the tiredness and stress out of it.  Don't despair--the curvature may not be permanent.  And I'd suggest not giving up on sex just yet.  I also bought a vibrator thinking my wife would enjoy that more than me--but she just didn't--which in a way gave me more courage to just enjoy what we could do instead of feel like I was letting her down.  The thing is just under our bed now with drained batteries.

KAC

Davea

I saw in another section a discussion about using a sleeve-type device to make penetration easier. Whilst looking on various sex-toy websites I also thought that a strap on kind of thing would be the right choice.

I bought one and we tried it a couple of times. My wife didn't like it and I eventually threw it away.

IMHO talking about it first is the best plan.

BrooksBro

Thanks guys.  KAC, which positions seemed to work better for you?

Noway

Me in my case its not really the bend but the ed and as of late like the last good 6 months or so I havent got an erection at all or if I do its terrible. Im only 25 too.... its so frustrating. Or if I do get an erection its like half an erection.

jackp

This is an article by my friend Norman that he posted on the impotence group and I thought it may help some of the men here.

Jackp

Gentlemen,

  Life's observations initiate our discernment which greatly influences our course of action. Last year I frequently heard people say, 'The devil is in the details';  Below you find a definition of our affliction.
 
Impotence is a common problem among men characterized by the consistent inability to sustain an erection sufficient for sexual intercourse or the inability to achieve ejaculation, or both.  It can involve a total inability to achieve an erection or ejaculation, an inconsistent ability to do so, or a tendency to sustain only very brief erections. **Impotence is small in stature in comparison to the fullness of all sexual activities and therefore should be not spoken of or implied as such.

Step 1.    !! Re-tool your observation and let your discernment put you in a favorable position.  

Past President John F Kennedy said, 'Do not ask what your country can do for you but ask what you can do for your country.' Likewise please consider the mindset of the two phrases below:
'Do not say in your heart I can not do good sexually but joyfully proclaim from your heart that which you do sexually'
                                                                          And
'Be not overcome with the sorrow being defined and labeled as impotent but delight in the sexual activities that bring you joy while impotent"  

Step 2.   !!  Remember the joy of having a crush.  Remember the joy of dating.  Remember the nervous energy waiting for the clock to tick tock.  Remember the butterflies when holding hands and that quick kiss which made your heart go nuts.  Remember when money was no object great or small and you spent it all.  Remember the day when it was known that person was your very own.  Remember all that you hoped for and all you invested in. Remember all that joy and you hadn't even stuck it in!!   Remember your swagger, remember your smile, remember if you could hang out together if only for a little while.


Step 3. !!  Go Outside and Play or Come inside and Play.  The creative reasoning and participation that solidifies joyous relationships. I got busted once for playing Santa Claus with a girl in August; for I used the pretense of 'opening gifts' as a means to eventually say Ye-Haw!!  And I never even- stuck it in!!   Enjoy more of those things which satisfy.


                                                   Some Benefits of Sexual Activity for Men:

Sexual activities are Physical exercise:  spooning, and various positions using massaging technique along with personal and mutual masturbation burn lots of calories.  Maintain this 3-4 times per week can equate to jogging over 70 miles a year.

Stress Relief:  The satisfaction and relaxation after sexual contact are beneficial for the mind and circulatory system.

Reduction of cholesterol:   Sexual activity metabolically contributes to balancing the good and bad cholesterol.

Marital bliss:  love and devotion increase the level of oxytocin, a hormone that induces sexual desire.  A higher level of oxytocin will increase the frequency of sexual encounters between couples.

Hormonal increase:  Testosterone level increases within the body and strengthens muscles and bones.  DHEA is secreted throughout the body 5 times its normal level. Ejaculation is not required but orgasmic type sensations activate the adrenal cortex.  High levels of DHEA are associated with longevity, libido, warding off depression, decreasing insulin resistance in diabetics.


Gentlemen the better inner you must increase so that your bodily grandstanding can decrease.  The word impotence is a incomplete statement!

Be Strong and help your brother when you can,

Norman

0x5555

I could use some advice.  I know that we've had this topic before but I wanted to get more information.

I am about 8 months into this.  For the first 4-5 months the shape I had was mostly the same - some denting and  pain but relatively normal.  About 3 months ago things suddenly got a lot worse - the dent sort of collapsed on itself and my head no longer fills as much as it used to.

Since then I've been in a really terrible state.  I am really slipping into depression and feeling very helpless.  I keep feeling like this is just going to get worse and worse.  I wanted to know who out there has ED and whether it was a gradual thing or if it started early.  I'm feeling so scared that things are going to just keep progressing until I can no longer even get an erection.

I don't think I had peyronies, I may have had a fracture which maybe makes this not the right place.  But if anyone has some advice and experience I would really appreciate it.  I feel really helpless and scared quite frankly.  I'm only 30 and this is day by day becoming a harder and harder thing to deal with.

mike67

sent you a PM.  Give me a call tomorrow and we can talk about it if you wish.

Mike
Mikey

BentYoung

Hang in there man. This too shall pass.  

Skjaldborg

When I first came down with this (at 29), I too had a similar situation regarding erectile quality at the very beginning. It seemed like it wasn't filling up, particularly at the glans, the way it use to. Part of the problem was that erections caused significant pain at the time. The other part of the problem was that watching changes to my body - a body that I had always thought to be healthy and strong - was tearing me up inside. I felt like less of a man.

For me, exercise in general and running in particular helped me regain feelings of lost masculinity. I focused all of my anger and feelings of "I don't deserve this" into running a little further and cranking out those few extra pull ups. I started looking better and feeling better. I was taking pentox at this time and over the next few weeks the pain started going away. I also sought the help of a marriage and family therapist with experience in traumatic injury. It was a huge help to talk to someone who did not have a stake in my sexual relationship. My wife was and is very supportive, but there are times when I didn't want to pile all of my problems on her shoulders.

This disease will make you feel awful, no doubt about it. But no matter how bad it gets, you always have the power to make yourself stronger and tougher. There will come a time when you realize that after dealing with Peyronie's you can handle damn near anything.

Hang in there and PM me anytime.

-Skjaldborg

Noway

This is not in the right topic or I dont know if there is a topic about this but whatever. As of lately I notice I have really bad discolouring of the penis like all over I think due to masturbating too hard because its hard for me to keep erections and I have hardly any feeling on the left side. Im not sure what too do about it. Sigh. Life with peyronies disease..........

Iseilinus

Noway,
I have noticed areas of dark discoloration too.  No masturbation, and before I started the VED. I have not done anything to hurt myself. I have not seen others here talk about it, so I thought I was probably the only one. I also have some "tiger stripes" at the base.  This seems to be improving with VED use and my newer expanded protocol.

Quote from: Noway on February 21, 2012, 02:24:09 PM
This is not in the right topic or I dont know if there is a topic about this but whatever. As of lately I notice I have really bad discolouring of the penis like all over I think due to masturbating too hard because its hard for me to keep erections and I have hardly any feeling on the left side. Im not sure what too do about it. Sigh. Life with peyronies disease..........

Luciano

Quote from: Iseilinus on February 21, 2012, 09:49:25 PM
This seems to be improving with VED use and my newer expanded protocol.
Does that mean you are using the 26 weeks protocol or do you have a different protocol?
just curious
Luc

james1947

Noway
I had also changes in the penis colour. The change is not constant. Some time get purple, sometime more white, sometime back to the original pink. I can't find some explanation, the change happening not connected to VED, medications or intercourse, except that after VED is more purple for short time. It also not connected to flaccid or erected state.
James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

mercurza

Goodness, I can totally relate to being scared.

Got Peyronie's when I was 25, am now 28. It has been progressive for 3 years. I have 7, yes, 7 areas of plaque, have lost about an inch, and have a slight curve. I have had it all, ED, dents, curves, even the development of a painful plaque in the perineum. I have a severe anxiety disorder and this put me in the darkest place for two years. I got on Zoloft, and that aspect has been better. I have seen 3 doctors and thought I had cancer twice.

Here is the reality. I just had great sex last night, got married through all of this, started exercising more, taking the supplements recommended, talked openly to my fiance and now wife through it all, and now have normalized this thing as something I have. I just happen to have scar tissue in my penis, that is it. I made the decision to just face it and move on. From reading the forum, a lot of us get to this place, but it comes with taking action and thinking about the positive. Trust me, I know it's hard to see that right now. But this WILL get better mentally, and it can be managed physically.

I am only 28, when I got this I wasn't married, and the first time my new wife found out was on our honeymoon. It will get better.

- Mercurza

LWillisjr

A great positive post. Thanks mercurza.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Noway

Good ol peyronies disease it happens to the best of us.

Noway

Really for my age 25 years old and I got importence or ed whatever you want to call it and its saying I have to do techniques to fix it I dont think so. This is so messed up that I dont even know what to say.

james1947

I suppose that Jack friend Norman age is much closer to my age than yours Noway (or maybe not? I don't know him personally) so it is normal you are not excited reading his post.
From the other side, the option of an implant is always there if nothing else will not help with your ED. The life span of an implant is around 15 years so until the age of 40 you will be fine, even better than ever.
Myself will do the implant because I still want to enjoy sex like before. I am just waiting the timing from financial point of view as I don't have insurance.
I wrote you already, go out from this mood, you have posted some very encouraging things in the last few months.
James

Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Noway

My ed can be fix with medication I noticed postive results with cialis and pentox but I ran out of cialis and im going to see my doctor soon im noticeing new problems also. I also have tms really annoying.  

james1947

You see Noway? You do have positive results. So give a smile :D
I can afford sometime a joke, my son is 38 year old and I am wandering if to talk with him about Peyronie's when I will see him next time.
Where I am living now is 09 AM, blue sky light wind, I suppose will be a pleasant day.
I don't know where you are so have a nice day or pleasant night.
James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Noway

5 seconds of masterbation is right but flaccid penis you cant get peyronies when its flaccid.... Also you can get peyronies from masterbation too. Also all it takes is one instance of sex or masterbation to cause peyronies disease.

Noway

im back on 5mg of cialis once a day and noticed positive results i wanted the 10mg but he gave me 5 when he said he would put me on the 10 lol.