Kallmann Syndrome? FIRM FLACCID PENIS?

[Guest guest]

Hey All, I was just diagnosed with Kallmann Syndrom (!!) after an

MRI, life long ED, low T results, and lack of smell all my life.

I'm in my 30's and regret not having this diagnosed earlier. Any

other guys in the same boat? I just started using the T patch (5mg)

T replacement 3 months ago, and am hoping for the best. I just want

to get normal rigid erections. What are the chances of that? So

far, i've gotten better libido, somewhat better morning erections,

but they are not rigid or long-lasting. How long will it take for

me to see any results from the testosterone replacement therapy? I

was below 200 (range 200-1000) before the T replacement, and after 7

weeks on the T I was only 241 (!!) Shouldn't i have seen a bigger

jump in T levels? I read that with low nocturnal erections over the

years, the smooth muscles of the penis get damaged, so that my ED

could be permanent. If this is the case, i'm f*hkt. My flaccid

penis has also lost its elasticity -- my urologist said that the

more elastic (i.e., the more you can stretch) the flaccid penis, the

more healthy it is. My flaccid penis is very firm, and can hardly

stretch -- DOES THIS SOUND FAMILIAR TO ANY GUYS OUT THERE? Did T

replacement help with that? Basically, I have venous occlusion

disease (per diagnosis by top 3 urologists in NYC) -- since my penis

doesn't expand fully, it doesn't trap the blood from escaping my

penis when erect, so I simply can't maintain an erection (think of

filling up a tub when the stopper at the bottom is not plugged) --

its f**hking frustrating. Okay, anyhelp would be appreciated!

you can post on this group or email me directly.

peace, eric ecgny at dot com

[Guest guest]

You are at only 241 T level? Way too low.

You may have to go to self injecting 1/2 cc of depo T a week,

many men do not absorb well through the skin, plus the

shots are much much chaeaper

[Guest guest]

>

> Hey All, I was just diagnosed with Kallmann Syndrom (!!) after an

> MRI, life long ED, low T results, and lack of smell all my life.

> I'm in my 30's and regret not having this diagnosed earlier. Any

> other guys in the same boat? I just started using the T patch (5mg)

> T replacement 3 months ago, and am hoping for the best. I just want

> to get normal rigid erections. What are the chances of that? So

> far, i've gotten better libido, somewhat better morning erections,

> but they are not rigid or long-lasting. How long will it take for

> me to see any results from the testosterone replacement therapy? I

> was below 200 (range 200-1000) before the T replacement, and after 7

> weeks on the T I was only 241 (!!) Shouldn't i have seen a bigger

> jump in T levels? I read that with low nocturnal erections over the

> years, the smooth muscles of the penis get damaged, so that my ED

> could be permanent. If this is the case, i'm f*hkt. My flaccid

> penis has also lost its elasticity -- my urologist said that the

> more elastic (i.e., the more you can stretch) the flaccid penis, the

> more healthy it is. My flaccid penis is very firm, and can hardly

> stretch -- DOES THIS SOUND FAMILIAR TO ANY GUYS OUT THERE? Did T

> replacement help with that? Basically, I have venous occlusion

> disease (per diagnosis by top 3 urologists in NYC) -- since my penis

> doesn't expand fully, it doesn't trap the blood from escaping my

> penis when erect, so I simply can't maintain an erection (think of

> filling up a tub when the stopper at the bottom is not plugged) --

> its f**hking frustrating. Okay, anyhelp would be appreciated!

>

> you can post on this group or email me directly.

> peace, eric ecgny at dot com

>

My situation has some similarities.

I am surprised that they tried to put you on the patch. I started off on the

patch more than

likely due to the drug rep who was buying my endo lots of surf and turf and free

golf

rather than what was the best cost effective medicine for me or even giving me

the options

and letting me chose. This is a simple fact of the medicine business if you do

not have a

doctor who is committed to using the best and cost effective medications

regardless of

what is new and trendy or which drug reps court him or her with the most

expensive gifts,

incentives, and defacto bribes. Sadly this will get worse as more government

control

comes in only this time it will be some pencil pushing bean counter who will say

what med

i will get put on.

At any rate, the patch is notorious for causing skin irritations and not

providing a good

rate of absorbtion and doctor who has worked with a significant number of TRT

patients

knows this. No one that i know of has been happy with patches and the men who

have

tried them experienced modest and totally insufficient increases in total t. I

would push

your doc to get you off the patch immediately and switch to gels or creams if

you want to

stay with the dermal route.

As for going through life until your 30's to find out that you have this problem

(they were

not willling to give me the Kallmans diagnosis, but it was considered), I can

empathise with

you.

You are in good company here. Many of us have had this problem be it

hypgonadisim,

kallmans, or testicular failure since we were young boys/men and no one knew it

or had

the insight to ask the right medical questions. As a result, we lost our teens,

20's, 30's

and perhaps 40's trying to wade through the maze of incompetent doctors,

battling with

HMO's and insurance, and living with the shame of ED, depression, constant

fatigue,

among other ailiments all with no answers except for--it must be in your head.

As far too many doctors are ignorant regarding TRT for men, you will likely go

through a

few docs before you get one who knows what they are doing and above all cares

about

getting it right more so than making a buck off of you and your health plan.

We could help you get on track with the TRT portion of your treatment if you

would give

us all of your lab results. Not to sound like a broken record, but if your

doctor is not

testing your estrogen levels by using the more sensitive tests, you need to find

a new

doctor. No doctor should be giving you exogenous T without testing our Estrogen

levels

as well.

After being on T for about three years, I got back some of the size that i

though i had lost,

and I now get the morning wood that a teen would be envous of when everything is

in

tune.

Hang in there--there is help and there are docs who can help. You just have to

search

them out