Update scary symptoms HELP

General Discussion
#1

Hey everyone,
It now appears that I’m experiencing Peyronie’s disease after 7 months off finasteride. I didn’t even know this was a term until my penis started bending off to the left about 6 weeks ago and sex began to hurt but I paid no attention to it and put it on the back burner. It’s now clear as daylight that I’m suffering the full affliction of PFS sides as my body is beginning to slowly break down. About 2 months ago as I lay in hospital I was waking up with hard erections, my libido was strong but was mild in comparison to my normally high sex drive however I had a turning point about 6 weeks ago and I began to see a gradual decline in libido it’s like it disappeared over night entirely and with it a straight functioning penis.

Is this normal considering 7 months have passed and I’m showing new symptoms it astounds me this drug has side effect after side effect after I ingested only one tablet at a micro dose of 0.2mg.

I’m in great distress right now as this disease seems to be slowly chipping away at me causing so much pain.

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#2

I should mention that I’m only a 28 year old man and Peyronies doesn’t seem to be highly correlated with my age group. I never once assumed that one drug could cause so much affliction compared to any other drug on the market that I know of nor did I know that it could cause genetic changes to AR expression after such a small dosage, truly shocking that a drug company is still selling this highly toxic drug and worst of all getting away with it while we suffer in vain. I have kept a watchful eye on my symptoms, although I did try and turn a blind eye which at this point is impossible to ignore, I’m beginning to see new grey hairs appearing each week on my testicles, I’m also finding it hard to walk as the padding underneath my feet have gradually worn away as has the muscle on my back that helps with back support, it’s like a muscle wasting disease of some sort. The only way I can describe this affliction is suddenly waking up and being in the body of my 84 year Grandad, who at this point seems to be in a healthier state that someone who’s in the prime of their life.

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#3

Did the doctor confirm it’s peyronie’s?

#4

I went to the doctors last week had some doctor feel around my testicles and had a scan but nothing out of the norm showed however there’s no denying that my penis is bending completely over to the left.

#5

Not necessarily peyronie’s - Is it whilst erect or what exactly?

#6

Soft and erect very scary this only began to happen 6 weeks ago.

#7

I have had weird penis things happen.

Flaccid, twisted and leaning to the left and in the night waking up with thin curved erections from time to time.

This has not been consistent and things seem to improve with time for me.

If your doctor doesn’t confirm your Peyronie’s, I would suggest it is yet another symptom of PFS that nobody understands, BUT it isn’t automatically a permanent thing.

#8

Ok, if there’s nothing out of the ordinary during your scan, i think you can exclude peyronie’s - It could be tissue abnormalities, or inadequate blood being pumped in to the chambers, fuck knows, many symptoms replicate the extremely fucked up ones, should put your mind at ease.

#9

Unfortunately, these symptoms are quite typical. Many others here suffer from them. And yes, some symptoms may appear like old-man symptoms, which is not surprising considering we basically talking about reduced/lack of androgenic action in certain tissue.

You are absolutely right that it is incomprehensible that a drug that can do all this is not only on the market, but it is readily prescribed for a cosmetic problem.

The staff of this forum and other contributors from our membership are determined to raise more awareness of this condition and to initiate research in the underlying molecular drivers, which will hopefully one day lead to treatment options. To do this, we need everyone’s help. Please see my following post about steps that every member should take to help us: (17) I took a single pill of finasteride 4 months ago and I'm going through hell

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#10

It’s affecting my sex life at this point it’s incredibly sore. I’m glad you have a positive outlook

#11

By the time there’s a treatment, we’ll all be dug deep down in our graves, sorry to say, might aswell trying to put in your own effort.

#12

Hey there.
How far are you guys into finding out the mechanisms behind PFS and a treatment protocol. I’m seeing conflicting evidence on the forum that this is a permanent state which has to be the scariest prospect ever.
It’s very disheartening to think that my condition is disabling me with nobody that I can reach out to because it’s not a listed medical condition.

#13

Maybe, maybe not. We have a decent idea of what has happened to us, we think that our problem is relevant to many classes of drugs and thus many people, and research into epigenetics and how to manipulate epigenetics is developing at a rapid pace. While this is a very ambitious endeavor, we have some things going for us. Maybe we will get lucky, maybe we won’t. Maybe we will succeed, maybe we won’t. Let’s find out!

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#14

“Permanent” just means that for some this problem will not resolve on its own and is not treatable at the moment. It does not mean it is irreversible in principle.

We have a decent basic idea what has gone wrong with us. Research is underway to confirm the basis of it. An important study is long overdue and will hopefully be published soon. Even if the study confirms what we suspect, we will need more studies to go deeper into the molecular factors at play , before we can think about treatment options. But if what we think is true, this condition is largely reversible in principle in my opinion, although the technology to do it is not yet readily available for the treatment of humans. Fortunately, though, research in this area (e.g. CRISPR) is “the shit” right now and is developing at a rapid pace (see here for another example: Designed switch allows unprecedented control over cells).

But before we can think about treatments, we have a lot of work to do. The Baylor study will hopefully help to establish our problem as a distinct condition. The Admins are currently working on a very comprehensive literature review that will expand the theory on our condition and how it ties in with persistent side effects of people who took Accutane, Antidepressants and other drugs. This will make our problem much more relevant and will hopefully create more public awareness and interest from researchers, which in turn will give us more access to resources. Our Survey will provide data to support this outreach and will show that our condition is more than “low libidio and a bit of depression”. It will also show the large overlap in symptoms between people who took Finasteride, Antidepressants or Accutane. We are working on expanding our social media presence to get more attention to our problem. The 23andme project attempts to find genetic markers for our condition. You may have seen the active thread about the Reuters leak. Things are moving!

There is a lot that we are doing, but we need everyone’s help. So, please:

a) Report your symptoms to the authorities to let them know we exist. The label changes in many countries are a direct result of such efforts.
b) Participate in our Survey, so that we can present the full scope of symptoms suffered by people in our community.
c) Provide your 23andme data. If we get lucky, we may find genetic markers for our condition.
d) Help with our social media offers, to create more awareness of our condition.

For many this will not go away on its own. We will have to put in the work to have our condition accepted and to have more research. And you can help us with that!

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#15

I’ve heard of CRISPR before after I read a Chinese scientist edited a gene that would stop a baby from getting HIV but this was an unborn child as I remember. Not to set a bad tone but I don’t think this technology will be used commercially until decades so the viability in a treatment option really does seem beyond our grasp which is somewhat discouraging there must be an easier mechanism to undo the silenced genes perhaps environmental induced epigenetic changes by resistance training. I never thought in my wildest dreams that this would be my undoing in life, I mean getting hit by a bus, drowning in the sea, eaten by a shark, shot down in a drive by shooting nope one simple pill, who would believe me? My doctors just laugh while I look on and think I must be living in some horrifying simulation.

I really appreciate the guys working behind the scenes including the admins of this site who are volunteering in spite of overwhelming disparity so I do thank-you from the bottom of my heart. I don’t know if you are aware of this endocrinology foundation but it has specialists of up to 18,000 professionals that focus on hormonal disorders surely they would be a massive help if we could get their interest.

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#16

It has been said Crisper will never be used on an adult human being in a clinical setting…Idk? Also if all you got are sexual sides or a crooked dick fall on your knees a bow to the sky daddy of your choice because this condition can result in mental and physical complications so sever that suicide is a daily struggle in one’s mind to continue living in this state.

#17

[quote=“Papasmurf, post:15, topic:38413, full:true”]
I’ve heard of CRISPR before after I read a Chinese scientist edited a gene that would stop a baby from getting HIV but this was an unborn child as I remember. Not to set a bad tone but I don’t think this technology will be used commercially until decades so the viability in a treatment option really does seem beyond our grasp which is somewhat discouraging there must be an easier mechanism to undo the silenced genes[…][/quote]

We don’t know if CRISPR will become a realistic option. But imagine one day CRISPR becomes applicable in humans and we can’t use it, because we did not put in the work to identify the target(s). Now that would suck, wouldn’t it? That’s why we have to do as much as we can, until there is literally nothing more we can do.

But CRISPR is not the only option, it is just the most well known example of the rapid development in fields of science that are relevant to us.

I really appreciate the guys working behind the scenes including the admins of this site who are volunteering in spite of overwhelming disparity so I do thank-you from the bottom of my heart.

You are welcome! Now what are you going to do? The Survey literally takes less than an hour to complete. So, please participate!

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#19

I’ll fill out the survey point me in the right direction please.

#20

There is a bar chart icon on the upper right in between the globe button and the magnifying glass. You have to use a laptop or desktop computer (no mobile phone).

#21

Done :slight_smile:

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