My "side" story, dealing with fear

[Prop]

6-7 yrs on propecia, little breaks in summer

at last year i didn't notice anything (i mean there was less libido, less gland sensibility but hardly recognizable)

in summer 2008, some months after stopping propecia, sides started and growth stronger and stronger
one day i had a very bad pain for hours in my genital region.
After that episod, pain disappeared but numbness and a strange "sparkling" sensation are still with me (now no more "sparkling")

since 2008 i still have less strong erection, penis hypoesthesia, discomfort on lower belly.
more time to get it up, and after eiaculation, more time to get it soft
long time before eiaculate.


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UPDATE

Dec 05, 2010
the shrinkage seems recovering a bit but in strange way.
the shrunk area start to fill like the top of "lego block".
(i don't know if i make myself clear)
in erection i can feel clearly this weird thing.


january 2011 i had an improvement of my situation, but is unstable

when one of my sides (prostate discomfort) was less strong, i noticed an overall improvement, specially in penile sensibility.
It's very similar to this case on P.help
http://www.propeciahelp.com/forum/viewt ... =30&t=1094

2011

experiencing cycle symptoms
From 1 jan to 16 was "good" - 15G
from 18 to 27 was "bad" - 10B
from 27 jan to 1 march "good" - 32G
from march 1 to march 11 "bad" - 10B
from march 11 to may 10 "good" - 60G
may 11G 5B 10G 5B
june 6G 10B 7G 7B
july 14G 17B
aug 3B 28G
sep 7G 15B 8G
oct 5G
TIMELINE
15G 10B 32G 10B 60G 11G 5B 10G 5B 6G 10B 7G 7B 14G 20B 35G 15B 13G

minor update
april 2011
i'm noticing less hair on my head
(since i stopped finasteride, my baldness didn't get worse)

minor up
07 may
noticing an improvement in penile girth
less wrinkles on dorsal and more thickness
discomfort on lower belly still present but seems less severe

18 may
i felt something like "unblocking sensation" on lower belly
and i experienced more sensation/pleasure during an orgasm.
this reinforce my opinion that prostate plays a central role in PFS.
My theory is that lack of libido and lack of sensation are due for
a sort of nerve compression on dorsal lateral portion of prostate


august
Fluctuations, but anhedonia, lack of libido still bother me
penis girth seems improving


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BLOOD TEST

glucose 95 (55-110) mg/dl
creatinine 0,95 (0,70-1,20) mg/dl
FSH 7,81 (1,60-11) mU/ml
LH 9,87 (range 1,50-8,60) H mU/ml
prolactine 12,3 (4,0-15,3)ng/ml
17B estradiol 6 (range 7-45) L pg/ml
Testosterone 5,06 (3,50-9) ng/ml
test free 13 (5,6-40) pg/ml

SPERMIOGRAM

small amount of semen
asthenospermya
terathospermya

TRANSRECTAL PROSTATE ECHO
Size: Normal (in upper average limits)
Few Little calcifications due to inflamatory process
Beginning of central adenoma growt
Overall: on the average

TOTAL ABDMEN ECHO
Nothing pathologic
---------------------------------------------------------
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Useful tests not perfomed yet

INVESTIGATING NERVE DAMAGES

Sensory evoked potentials SEP
Somatosensory Evoked Potentials SSEPs

Somatosensory Evoked Potentials pudendal nerve(SEPPNs)
sensory conduction velocity of the dorsal nerve of the penis (SCVDNP)
pudendal nerve terminal motor latencies (PNTMLs)
bulbocavernosus reflex latencies BCRLs

magnetic resonance neurography (MRN)

INVESTIGATING ARTHERIES DAMAGES
important: evaluate Pudendal venous plex

doppler of the cavernosal artery, and an ultra sound

Magnetic Resonance Angiography (MRA)
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Any guys recovered totally after persistent sides?

 

[Ende]

Any guys recovered totally after persistent sides?

There are some cases at propeciahelp.com, but noone is able to use the information which is available, to reproduce anything. Have you done some blood work?

 

[Prop]

Any guys recovered totally after persistent sides?

Have you done some blood work?

unfortunetly not.
doctors treating the case like mere prostatitis, i'm from italy, there the medical community is still unaware of this problem.

Also me at beginning i was skeptical about this syndrome because there is some kind of resistence to accept this uncommon situation.

in the next Doctor appointment i will insist for the bloodwork

you know exactly which kind of parameters i have to test?
and by the way the possible remedies to take?

i know everithing is uncertain

 

[Ende]

Elevated estrogen level causes erectile dysfunction, and it's known to cause problems with the prostate too. How severe was your symptoms at the time you quit propecia? You should do a blood test as soon as possible. Check LH, FSH, testosterone, estrogen, prolactin and SHBG. Make sure you get a copy of the numbers and ranges. Depending on the result, there are several drugs available to deal with the problem.

You could try 50 - 100 mg of zinc every day for a couple of weeks, and see if it gets better. It works as an aromatase inhibitor, and shifts the testosterone/estrogen ratio in favor of testosterone. Quit if your joints begin to crack. It indicates that the estrogen level is too low.

 

[Prop]

How severe was your symptoms at the time you quit propecia?

Absolutely light symptoms.
little bit of low libido, and asthenia, that i haven't related to propecia
i can tell u that now, thinking back, i had some period of brain fog

syntoms became worst only months after stopping

i quitted mainly for price\modest results of propecia

You quitted cold turkey or gradually?

 

[Ende]

I had so severe side effects after 4 months use, that I had to quit immediately. Went back on a low dose 6 months after that, when I realised that I wasn't going to recover by myself anyway.

 

[TA45]

What does "recover by myself anyway" mean?

 

[Ende]

It means that finasteride is able to wreck your endocrine system so bad, that you need drug support to recover.

 

[Prop]

I had so severe side effects after 4 months use, that I had to quit immediately. Went back on a low dose 6 months after that, when I realised that I wasn't going to recover by myself anyway.

my problem was that i hadn't any side noticeable for all period

i choose to use propecia only because i read that sides always disappear after stopping.

someone have to prepare a class action ...

 

[Prop]

Depending on the result, there are several drugs available to deal with the problem.

but u mean that these drugs have to be taken for a period, right?

i hope not for a lifetime

 

[Ende]

Yes, you would only need treatment for a period to correct the levels which are causing trouble.

 

[TA45]

Enden, so your not on any treatments now?

 

[Ende]

Yes, I am. It's different in my case, because I'm still using finasteride and experimenting. I'm currently on testosterone injections and cabergoline, waiting for my estrogen level to raise.

 

[Prop]

I'm still using finasteride and experimenting. I'm currently on testosterone injections and cabergoline, waiting for my estrogen level to raise.

are u still using finasteride ??!!? Why?

i don't understand.

 

[Ende]

Because I'm using it against male pattern baldness, and it makes no difference for me anymore, whether I'm using it or not. I didn't recover after I quit the drug, but I've discovered how to manage and reverse side effects, and I'm taking advantage of that.

 

[Nuli]

Took me like 10 months to fully recover from 6 months use

 

[Prop]

Enden, you had some structural modification to your testis\penis?
if yes, you recovered these sides?

i have hourglass shrink in flaccid state, and slight testis shrink

now looks better, but not sure about testis.

 

[Ende]

The testicles are fine, but they were aching, shrinking and getting softer for a period. That was because of reduced stimulation from LH, due to elevated estrogen level. I'm now supressing LH with exogenous testosterone, and I don't care about testicle atrophy. Those who do, use hCG to keep them i shape. hCG mimics LH, and stimulates your testicles to produce testosterone. However, this is not proper treatment for you. Once you take care of the hormone levels which are causing trouble, your testicles will grow back.

My body began wasting penile muscles at low testosterone level. It has caused erectile dysfunction. I had pain in the region, and my PC muscle began failing to contract. Before, when it was erect, when standing, it was pointing straight out. If I contracted the PC muscle, it was pulled slightly upwards. Now it's pointing more upwards, and when I contract the PC muscle, it's pulled downwards. I'm currently doing an experiment with steroids and kegel exercises to try to solve the issue.

The penis tissue was getting softer, but Andractim reversed this within a couple of weeks. The penis is dependent on some DHT. People experiencing severe side effects from finasteride has DHT deficiency.

 

[Hate2LoseIt]

Propecia,.... do you have a girlfriend or an active sex life?

 

[Prop]

Hate2LoseIt, before i crashed i had a lot of sex,
after i had not.

first at all zero libido
second no good erections and random pain\discomfort
third i prefer avoid till my situation is improved.

Probably after one and half yr i was able to try, but i prefer wait