Why should I live?

General Discussion
#31

I hate that you feel discouraged by these two recovery periods coming to an end, but they do show you two important things:

  1. There is nothing mechanically wrong with you. The fact that you got normal erections means that you aren’t suffering from Peyronie’s disease or irreversible nerve damage to the penis.

  2. They show that, given the right treatment and timing, you may be able to pull off a full and permanent recovery. The fact that the first one lasted so long might actually be a good sign for you.

Here’s what I would do if I were you. It’s also what every PFS sufferer should do, and what I am starting to do:

  1. Keep a symptom log. And by this I mean catalog EVERY symptom you can think of that is hormonally driven. This includes erection quality and quantity, ejaculate quality and quantity, skin oiliness/acne, energy level, etc. To keep the log accurate try to go to sleep and get up at the same time every day. Also try to pick a diet and stick with it.

  2. Get as many hormones measured as often as you can. See as many doctors as you can but be careful with medications before this step is completed. Track the hormones on a timeline if possible and you may find that you are having a hormonal cycle where Testosterone levels vary wildly and other hormones also go up and down. I strongly suspect this is what is happening to me and it seems to be what is happening to many other site members.

  3. Compare the symptoms to the hormone levels and present the results to a physician who is willing to lend an ear. Since many physicians don’t believe PFS exists you may have to go to another state to be believed but maybe not since the symptoms may well speak for themselves. Discuss treatment options with that doctor and when the best time in your cycle (and I would not be surprised at all if you have one, since many of us seem to) would be to start treatment.

  4. Continue the above three steps and hope that you are able to mount a full recovery. Also be optimistic that modern medicine will be able to uncover a treatment or cure.

I know I don’t really know your situation and we’re all probably in slightly different boats, but I think that the above approach could work for many of us. At the very least the logs could be useful in suggesting future directions for PFS research. Good luck with your recovery and to be optimistic the very fact that you have recovered briefly twice before at least gives you more hope than those who have never recovered. I’m not a doctor by any means, but I do have faith that a common sense approach like the one above could help many of us feel a lot better.

#32

Indeed, this is great news. However, on the other side, the crash proves there is something very wrong with my metabolism. One’s metabolism is supposed to adjust itself, always coming to the same stage it was genetically programmed. Since this was not happening after i quit fin, i artificially brought my metabolism to the state i had prior to propecia (a five year battle). I had the hope that if i could combine the right diet restrictions, exercise, build enough dopamine (through diet) and gaba (medication), and fight inflammation (medication), i would be able to lock in my metabolism in a state that would last. The fact that i was able to reach my goal (my body’s original way) live normally for a couple of months and it didnt stay that way is very disturbing to me. By logic, once you reach your natural condition, your metabolism stays there. Or at least it would help it kick start from there. Unless something has changed what your natural condition is. The gene switch off theory seems much more plausible to me now. Propecia may have changed some of our genes, so we are now all programmed to be hermaphrodite-like despite the fact that we have adult male bodies. We keep ejaculating despite the fact our 3 adiol G is below range. Of course this is not sustainable.
From this point on, i will change my strategy. I will keep regimens and a specific diet as a means to preserve my health for a future treatment. I also learned this problem is reversible, but the root is very deep.
To some extent, i was very successful. Even though i have been working for six years on my recovery, i never expected to reach such a great level sexually, as i had these last two months. I had urge to have sex, great visual pleasure, everything the same as it was before. Even the relaxing feeling after sex, lasted for the whole day, like the old me. It was amazing. Wish all of us reach that state again, in a sustainable way.

#33

this is bad.
That is way I don’t believe any recovery theory. I dismiss them and will keep dismissing until see some thing in black and white matched with physical well-being.

#34

Why don’t you think the recovery periods on just a part of your overall recovery? If you keep it up it might be that your recovery periods might get longer/more frequent.

#35

It is indeed bad news. JN recovered for two years didn’t he? and yet he is back here suffering once again. I cannot sustain a single improvement despite making numerous ‘brief recoveries’. In fact, I have eventually gotten worse after each recovery. This is very worrying.

#36

What about the people who are in the recovery section, or otherwise posted about 80-100% recoveries and never posted back, are they also back to square one?

#37

The rules for posting recoveries changed last year. Guys have brief periods of feeling “better” in some or all areas and want to believe (as any of us would) that they have recovered. I think the wanting gets the better of them and they declare themselves “recovered” only to qualify that later by saying “70-80% recovered” or even to go back to full sides. Personally, I havn’t seen any true cases of documented recoveries at this point. Not saying it will never happen but we have to persent a clear picture of what is happening before we can figure this out.

#38

Have any of them being contacted and confirmed that they have indeed gotten worse?

#39

I don’t believe any recovery. these are lies. not a proven recovery.

#40

I beg to differ. There certainly have been recoveries. Maybe they weren’t the more severe cases, but to say there have been no recoveries would be dishonest. There’ve been natural, sponteous recoveries from cancer and HIV, surely there’ve been recoveries from PFS.

#41

correiovip, I highlighted this statement from an earlier post. I think you highlight an important point, that using sexual function in essence is inhibitory toward itself for many PFS sufferers. There are many anecdotal reports of the condition being directly worsened after sexual - especially repeated - activity. Those who experience temporary improvements should consider this and how it may have played a role in their experience.

Second Amendment: provide examples with your opinion. If you think there have been documented long-term recoveries provide evidence.

#42

viewforum.php?f=22

#43

Per the section disclaimer:

“NOTE: Inclusion in the Recoveries section does NOT mean the Admins endorse or advocate any listed stories/treatment protocols as a “cure” for persistent side effects. Readers understand and acknowledge the Admins have no way to verify the complete authenticity of posted information, and should evaluate all content on their own terms and at their own risk.”

#44

I know. I read that part. MartinM asked for documented recoveries and I provided him with such.

#45

Just pointing out this part:

“Readers understand and acknowledge the Admins have no way to verify the complete authenticity of posted information”

#46

I agree. There was nothing i could do about it. I did not over do it. I never ejaculated more than once each time. I had sex or masturbated three to four times a week. I wrote it down on a calendar each time, to have some control of it. Three to four ejaculations a week. 90% of the time on alternate days. Also, my libido was going through the roof. A controlled diet, no medications, everything right… This disease is self regulated. It brings us back to the same state. Before, i had no desire for sex, so it was very easy to avoid ejaculation. This is the down side of a brief recovery like this, you need to ejaculate. At first it is wonderful, but after a month things start to fall apart. But you re still horny, and cant avoid it.

#47

SA, you responded to this comment by boston:

with this:

Boston called a the recoveries into question because often later qualifications come out that the recoveries are not 100% or they are only temporary. A link to the recoveries section - which we all have access to BTW - is not the evidence boston is seeking. Recovery is not symptom management or symptom improvement. Recovery means that the person can revert to their old way of life without further behavioral modifications or treatments. Symptom management is when someone can change their behavior or use some form of medical treatment and symptom improvement means that someone’s condition improves some %. What I believe boston is getting at is that after suffering with PFS a man tends to be over-enthusiastic about improvements and that most, if not all, of the recovery stories are not true long-term recoveries but rather cases of either temporary or long-term symptom management or symptom improvement. Also, see Mew’s point above.

#48

MartinM, your post was completely pointless. As anyone could see, my response was to SPStricken, not boston332. It seems your only purpose here is to flamebait. You call out braziliandude for being off topic (he wasn’t) when you yourself threadstalk -JN- and ask about his sexual abilities in a thread about shit fungus. You have got to be the most sanctimonious poster here. I just tried to put you on Ignore, but apparently I cannot and am forced to read your pointless comments.

If feel compelled to get the last word, go ahead, my point to spstricken was that any and all recoveries shouldn’t be considered lies. The point still stands.

#49

If I remember correctly some part of JN’s “recovery” status was being used to justify candida treatment to which I inserted that JN’s sexual recovery is still in question. If you think differently post the thread. Furthermore I asked JN specifically in his thread about his sexual function multiple times. Here’s an example:

viewtopic.php?f=3&t=2261&start=740

I have no idea what you’re referring to with braziliandude. Post the link.

You’re correct about striken’s post, however it’s on the same topic as boston’s which is two posts earlier. I, as I assumed you did, ignored spstriken’s post as it was along the same lines as most of his posts and focused on boston’s which at least makes sense. Forgive me for taking this for granted however it makes more sense than addressing striken’s post which lacked substance.

Your point was not “any and all recoveries shouldn’t be considered lies”, it was “there certainly have been recoveries”, which you backed up with a link to the recoveries section. Using the recoveries section as justification presents a number of problems. 1) Admins can’t verify the stories as Mew pointed out, and 2) there is a problem of defining what a recovery is. The latter of which I clarified in my previous post and the former is self-evident.

This isn’t about getting the last word, it’s about being logically consistent - which we have to struggle to be if we’re ever going to find a replicable treatment. Someone is not recovered if they are still modifying their behavior or using medical treatment to regain some of their life after PFS even if they feel back to 100% with behavior modification or medical treatments, they are managing symptoms. There’s a difference.

SA, how are your other endeavors going? Spring and warm weather are right around the corner.

Getting this thread back on topic, amsterdam88 hasn’t posted in a while and all 5 of his posts are in this thread. How are you doing now?

#50

I agree that with the general idea that there are a lot of people, way too many people, claiming recovery when they really haven’t. Saying you are 80% recovered is kinda bullshit, did you measure your dick size and determine you have regained 80% of the size you lost? Of course penile shrinkage is only one area of this condition but the other side effects are even harder to put a number on. Do I think some people have fully recovered? Yes a few. A few that were not prone to getting it long term in the first place who got better with time and a few other lucky ones who “kicked” their bodies out of it with drugs and or supplements (and there is not much consistency on those drugs or supplements which do work).

A complete recovery is entirely different than feeling better than you did when you first got PFS. I feel 10 times better than I did the first 6 months off finasteride, 20 times better than during the crash period. But how much better is 20 times better than wanting to die and fearing waking up every single day? I have never said I am recovered, not even partially. Whatever that horrible shit did to me, its still there, with time and some med’s my body and mind have become more tolerant of the condition but I still feel absolutely nothing like I did years ago before this crap.

It is my opinion you will know for sure when you are recovered, not only because your sexual sides will resolve but also because you will feel your mind at ease. This is hard to explain I think unless you have the mental sides, those who do, know what I mean. But when your hormones kick back in and you feel like living life again, feel like you have purpose and want to enjoy things well that will be recovery. Until that day comes where I feel like that AND my penis and balls look like and are operating like they did before all this happened… I am not recovered in any way shape or form.