Stillhope's story - Still Suffering, losing hope

finasteride
#1

First off, I appreciate all the support on this forum and I have been following it for the last three months and this is my first post. I took finasteride from late May to late September and stopped taking it in late September when I met my current girlfriend, which tipped me off to severe sexual side effects. The doctors did a full blood panel test at the end of September and everything came back completely normal with testosterone slightly high. Doctors kept saying that it was in my head so they prescribed me Viagra and Cialis. The first month off, Viagra was effective and I was even able to have sex with my girlfriend seven times in one day. Two weeks later, I started to feel the following symptoms: fatigue, brain fog, anxiety, depression, headaches, heart palpitations, twitching all over my body, insomnia, ED, no nocturnals, no morning wood, no spontaneous, shrinkage, penis looked like hourglass, it had a curve. All of these side effects have continued up until now. I’ve been taking these supplements: L-argine, L-cartinine, Vitamin D, Vitamin E, Maca, just started pycegenol and bromelain. Taking 25mg of Viagra every night to try to stimulate nocturnals. Right now I’m on the fifth day of a water fast and believe this protocol has helped with some of the neurological side effects/brain fog and had a spontaneous erection last night awake but it was still weaker than it used to be right off the drug. Still no changes in sexual side effects. Recent hormone result from a month prior showed Test at 224 and DHT at 20, which coincided with what I think was a crash and the incidents of all of these symptoms which I am trying to address. I’m really depressed right now and this is all I could think about. I recently got an MRI which showed traces of a microvascular brain disease affiliated with migraines and then also incidentally showed a 3mm right occipital arachnoid granulation, which I’m not really sure what that means. I’m also getting a pituitary MRI and testing my cortisol with a 24 hour urine test. I really like some feedback on my chances of recovering, even if not fully back to pre-finasteride state. Any tips or pitfalls specific to my case at this point on the post finasteride timeline would be greatly appreciated.

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5 Months Off..some improvements
#2

Another horrible story of how this dreadful drug has made the everyday life worse for someone who did not deserve it. My deepest sympathies stillhope, and as your name implies, there is certainly still hope!
I am no professional, but have had almost all of your symtoms to varying degree. The one that you should be careful about is the hourglassing and curve. Both are the telltale signs of peyronie’s disease. Plaque in the penis due to inflammation and a healing process out of control. Book an appointment with your doctor to talk about this. The better it is looked into, and the earlier you get a diagnos, the more are the options going forward!
Do look at the Peyronie’s forum, they have a great deal of info on the dos and don’ts of the condition. For example if you have a curve and weak erection, DO NOT MASTURBATE OR HAVE SEX. This can hurt you badly. Here is a link to the forum and and take care of yourself now, all the best / Tommyz

http://www.peyroniesforum.net/index.php

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#3

Anything came up from your Pituitary MRI tests?

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#4

Thanks for taking the time to respond…I appreciate your advice. Do you have a specific thread related to PFS Peyronie because I can’t narrow something down in that forum that I could put into action? From what I know, l argine, l cartinine, pycogenol, and Vitamin E, are all good because they promote blood flow and prevent hypoxia or shrinkage, which I already have so I guess it’s maybe too late. Do you mind just further expanding on what you mean by Don’t masterbate or have sex? I was under the assumption that you are supposed to do the opposite. Thanks again for your reply

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#5

Also i have hourglass penis too, but it can be from many things. Not just hormonal. (Bad position in sex damages soft tissue of penis for example) Is your hourglass 7/24 effective on flaccid state? What happens when you get erections? Any pain? Does hourglass fades away in semi erect state?

  • Lastly, how about your orgasm build-up and intenstiy/pleasure also your semen volume?
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#6

I go on Saturday and am meeting with my neurologist, who is the first doctor who seems to have heard of this and is not just telling me it’s in my head. She seems to be taking a liking so I am going to go with every possible result I have including hormones, some studies that I think may be the most plausible cause of PFS. Do you or anyone have anything that you wish you did 4 months off fin? I’m starting to get a little discouraged. I am also assuming that stopping cold turkey and freaking out about it may have caused a crash for the 1st month off. I wish I could go back to that and just chill out

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#7

Well I had sex yesterday on the 4th day of my fast which I should not have done I think. The sensitivity was good, which is the only thing I noticed better while fasting. I had premature ejaculation/my lead up to orgasm was good, a lot of semen and it was white…but felt loose skin, wrinkling, and 70 percent erection…I swear it feels like I have lost 2 inches in girth and maybe an inch off the top now. I still have no nocturnals or spontaneous which is concerning. My gf is very supportive and I told her straight up about this so she usually blows me before we have sex…but things are getting worse and worse since my time of being able to have sex 7-8 times a day right after I came off fin. Can you expand on what 7/24 is in peryonie’s and no the hour glass is the same soft and erect. Semierect, Something weird happens though in that before I get to full erection my penis bends and twists to the left and needs a lot of stimulation to break through that and get hard. I don’t if I’m doing more damage like that or what. Any suggestions would be great or protocols? I’m trying my best here to get through this.

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#8

I mean, is your penis always look like a hourglass when flaccid? Mine is usually normal but sometimes it happens. What happens while you start to get erect and the state of erection? Is hourglass still there? Also you should masturbate alone to see what amount of semen volume you really have with your own eyes at that exact moment :slight_smile: Sorry, your message was hard to read, asking again.

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#9

My penis looks like an hour glass 50 percent of the time flaccid and like a baseball bat 100 percent of the time while erect, very narrow. I don’t have a problem with ejaculate volume. Semierect, I have a curve like 45 degrees, which after enough stimulation moves to a slightly bended baseball bat. I hope that is a good description. Thanks again for help

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#10

You may consider the use of Tribestan as 4 of our member reported benefits from it. (Protodioscin containing Balkan Tribulus Brand) Two of them actually completely recovered with it. But be careful, it can be negative for you. Do your own research first. I hope you get better. Start meditating and reduce stress along with obsession of your situation.

  • My last question, do you experience a wooden surface like sensivity loss when flaccid? In last few weeks when my penis glans rub to my underwears i feel a irritating sharp feeling as if my penis has a crust or something… but it is very mild. And i don’t notice any sensivity loss while masturbating. What is your sensivity loss feels like? I came so quick with my gf. and sometimes i came just at the start of an intercourse… if i had a sensivity loss, this wouldn’t happen to me right? I wonder do sensivity loss cause delayed orgasm? (Because you don’t feel much inside the vagina?) Thx.
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#11

Nah, I don’t have that but I will look into the tribasten. I don’t have that sensation but I do have a weird buzzing vibration on the left shaft of my penis and pelvis sometimes which I forgot to mention. I’m just very concerned about changes in the actual structure of my penis. Could this be related to my prostate by chance? Either way, thanks a lot for the help.

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#12

The shrinkage is the worst it’s been and I noticed when I take a shit, the flaccid state returns to normal…don’t know what that means

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#13

Yeah same here… it’s because the bloodflow or the angle of the pelvic muscles i thing… they are some yoga poses i do for different purposes… while doing them my flaccid penis looks pretty normal. I did while naked to see how it really looks lol.

Anyone knows why flaccid returns to normal while taking shit? thanks…

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#14

@Cooper Could you share the yoga poses (in a new thread)? It would be interesting to see how many other people experience a benefit from them, even temporarily. It might shed some light on something that we can build on.

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#15

Yeah of course, i don’t think new thread would be neccesary though because it is just a video link: https://www.youtube.com/watch?v=2aEceax_be4 This channel is very good. The one i talked about was the Frog pose btw.

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#16

I was thinking more about making it visible to as many people as possible and having people talk a out their experiences of it.

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#17

thanks all for the help. I got back results. My t levels were 550, my DHT was 30, TSH was a little high. In the waiting room to get my pituitary MRI right now. I can’t get the tangible results on either the blood results or hormones until Tuesday but am trying to get it sooner today. These hormones were tested at 8 in the morning. I have just been having a horrible couple of days-very intrusive and dark thoughts. I finished my water fast and it only seemed to work on brain related side effects, but only slightly improved. I am worried for my future and would honestly like to know if I have any chance of recovery. Also, I wanted to know, what are the chances of someone recovering after a crash and what is the timeline

Just one more question. Is there any types of imaging tests, blood tests, or nerves tests(localized or regular) nerve tests I should be doing to see what could be going on? Can my problem also be the low dht or high TSH? If so, any tips?

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#18

in my experience (and in almost everyone’s experience), you won’t find any answer in lab tests and doctors.
and i really think is a bad idea to keep on taxing our systems with supplements and drugs, we should all do the opposite: detox.
we’ve been poisoned.

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#20

2/2019 update: I figured I would give you guys an update. So I am now just over 150 days off:

Symptoms that remain:

-no nocturnals
-no spontaneous
-shrinkage
-bend to the left and up
-cell phone type buzzing in pelvis area and base of penis
-no tingling in prostate area and base
of penis
-general anxiety
-very weak thin base of penis

Symptoms that have improved a little bit:

-joint pain
-physical shaking with anxiety
-insomnia
-depression
-brain fog

Everything came back mid range for my hormones or everything was very normal. My testosterone came back at 550 but only thing is DHT At 30. My doctor said a DHT level of 30 is normal, which I disagree with pretty heavily.

My pituitary tumor came back with something small not effecting my hormones. My endocrinologist thinks that cabergoline may help with shrinking the tumor and may help fix my symptoms, which does not make sense but I want to try following his instruction. If that does not work, he said we could start on clomid and if that does not work he is going to look at some type of DHT therapy. I went to another doctor that specializes in sexual medicine in NYC and he said I have mild Peyronie’s and suggested a vacuum pump. If that does not work or help, then peryonie shots but he did not think it was necessary.

One thing I have noticed since I posted. I been able to have sex with my gf when taking daily Cialis and have noticed a major difference in my flaccid penis while on it. I have also noticed that vaporized marijuana increases my libido and sensation noticeably. The base of my penis is still flimsy, jelly like, and extra skin there.

Based on my updates, I was wondering if you guys could please help in my next course of action specific to my case or just any thoughts and feedback would be appreciated. Thanks again for all the help and support.

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#21

Hey there,

Unfortunately, I don’t have any good advice for you but I assumed you’d like someone to answer you.

It sounds like you’ve got some good advice re: Peyronie’s and your use of Cialis is keeping things healthy.

With regard to your water fast, that’s good news. How long do you plan on continuing? I think I read that after a day or so, the benefits of fasting in normal people rolls off quickly.

Though it may seem that you’re having a miserable time, from my perspective as a reader, it sounds like there are plenty of reasons to be optimistic for continuing improvements. In my opinion (so take with a pinch of salt) there are a lot of people trying things that don’t make much sense and could be dangerous. I’d be inclined to just continue as you are or as you are advised by your doctor and not do anything extreme (and 5 days fasting is extreme by most people’s standard!) without supervision.

When you resume eating, I’d suggest you avoid 5AR inhibiting foods (Google them).

Your experiences are valuable to this community, could you consider contributing to other people’s topics as well as asking for people to post on yours? We have to stick together and I know you’ve said you appreciated support previously. Thanks!

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