I’m sorry for hijacking like this, but is here somewhere a thread which shows most of the common things listed from PFS sufferers? Stuff like low nitric oxide, gaba, high shbg, cortisol, theriodprobs and all that stuff? I’ve spend probably 2-3h a day reading into most of pfs symptoms and as said I was always passionate about bodyhealth (not the application of it tho xD) and it allll seems soo related to literally every organ and it’s reaction to certain activities/foods. Now I read about cholesterol and tglycerides, is there a list or so somewhere of it all?
It’s complicated, yes. The symptomatic information is on the main website, but there is no universal or causative biomarkers, just things that are quite commonly seen in patients. Some studies (see PFS foundation resources) have common assays in PFS cohorts, and before that my coadministrator @awor described some of these in his 2010 paper. We are running several projects that should better generate data instead of it all being buried in text amongst inferences. In terms of many organs and reactions, yes, many physiological sites can be affected, but all things are not equal and sites and severities vary extremely between patients. Patient experiences and symptoms from one to the next are often vastly different, including reactions. Further exposure to antiandrogens can add permanent and far more severe symptoms - such as in my case taking fin again in ignorance it had caused my then non-mental, non-sexual health problems. So please do not touch it again, ever - I know how little it takes.
Nearly all if not all professors looking into this issue now recognise the issue as epigenetic in nature, and there is evidence of this. “Epigenetic” refers to a per site, per cell change in the instructional expression of DNA via a number of means that do not change the genetic sequence. These are a question of extent by definition. I would advise academic learning materials or online courses from respectable universities on the subject if you’re interested, as the basics are important for any useful consideration.
In your case I really would continue to hope that thinking about this much more isn’t necessary (beyond avoiding antiandrogens in the future) as you’re still within the time frame your hormones will need to return to baseline values. I would keep positive in the next months you’ll be able to put this, at least mostly, behind you. If not, then we’re still working on it 
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Thank you for that thoroughly response. And yea I see now how feeling better makes one confident enough to try it again. But that’s why it’s so nice to document all here so I can reread all of it when temptation hits. I went from envying bald people to again envying people with hair in old age which is ridiulous and will take some training to totally stop caring. I’m incredibly grateful for the whole universe and all of you guys about where I am now and the help I’ve gotten through this, aswell as the guidance to not do this mistake another time. And it really deeply hurts me to see you guys suffering like this. I already thought backthen that hairloss made me more aware of other peoples issues but this here is another world. I never want to feel again like I did for especially the first 2 days after the crash(dont mean the sexual ones).
But I still try to read as much as I can to tackle every aspect of it already and steady(or from the first day), liver/kidney/gut/brain and receptorstuff with training and diet. I’m already slipping with stuff and can feel the setbacks shortly after so I don’t wanna get too ignorant and listen to my body and remember closely what it needed the most the first days after crash.
I will give myself maximum a month more for reading and creating a lifestyle which seems appropiate. I spent probably 8 years total and almost fulltime last 6 months how to fix the body and hairloss as side effect and maybe it has helped with my recovery but on the same time has thrown me into this shit to begin with. Time for me to appreciate and act and not just learn. Thanks a lot axolotl
Edit: not hijacking more sorx^^
Bro you need to lose weight and get your body together. This is why you’re having problems. Your levels are messed up because you’re fat and probably not taking care of yourself properly.
Strengthen yourself physically and mentally and your tolerance for drugs (and everything else) will improve. You are not one of the worst cases here if your only sexual side is ed. You can improve a lot. Start with intermittent fasting and exercise.
Wow, this is the kind of message that one would find in the “old forum”. Fortunately axolotl and awor made a great effort to change the “mood” and attitudes in this new forum. But obviously everyone chooses how to adress others.
Obviously you haven’t read my story. I have had 8 years of PFS and the first five years (part of them absolutely horrifying) I was very skinny, during a lot of time, many people thought I had become anorexic, but the truth is I just was losing muscle. I reached a point in which I had to use “S” shirts despite my height being 1.85 cm. I was losing lots of muscle but wasn’t gaining any fat. There was a time in which I started weighing less than 70 kgs, now I have checked the diary I was writing at that time and at some point I found out that I was only weighing 64 kgs, and I decided to stop checking my weight despite continuing to lose muscle.
This was the first five years, then during two years (after a crash) I started gaining fat and continued losing muscle, but despite the fat gain I never weighted more than 88-90 kg, (with my height being 1.85cm).
It has been during the last months that I have just gained lots and lots of kilos (following a new crash), and now I am fat. In the past everytime I orgasmed, I lost muscle. Now, everytime I orgasm I gain fat (and probably lose muscle, but it’s difficult to check since I am now full of fat xD). But the muscle pain I get the days following an orgasm is a clear sign that something bad is going on.
So, your theory of all my problems being part of just being fat doesn’t seem to be quite accurate, when the most brutal years of PFS I had I weighed less than 70 kg, despite being tall.
But I get it, when I was super skinny, many people told me that I had to eat more and take care of myself, they didn’t even understand what severe PFS can do to your body.
When you talk about “strengthen yourself physically and your tolerance for drugs will improve” you clearly seem to be coming from a very mild PFS point of view. Going to the gym caused me to crash (with bad consequences) in the past. I cannot run, and even walking causes me muscle pain. Despite this, I make my best effort to walk 30 minutes every single day. But I keep getting fat.
Also, if you think that tolerance for drugs will improve just because you “strengthen yourself phisically or mentally” you clearly have no clue about what severe PFS can do to your body.
I currently cannot work due to my PFS problems. I managed a way to work from home that implies just working 3-4 hours a day, and many days I have to change my work time depending on how I feel.
I have had extreme pains, I don’t even talk about, that have brought me to the edge.
Where have you read that my only sexual side is ed?
Please read my story before making some claims (and first of all, realize that many of the sides I have are not even mentioned because I want to contribute to the positive mood that axolotl has brought to this new forum).
As I said, this forum improved a lot when axolotl realized that we needed to start being kind to each other, and stop being judgemental.
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Please try to be more considerate in your responses to members of this site, in compliance with our community rules. The big misconception that some seem to have, is to think that whatever worked for them will also work for everyone else. Furthermore, some will argument if another patient can’t improve, he/she surely is doing something wrong. We will not tolerate this kind of attitude around here, also per our rules linked above. It so happens that I am probably in a similar place as @kan, and your advice in my case would be quite counterproductive, to put it politely.
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I read that your only sexual side is ed from your own bio. Maybe you should update that info if it’s not correct. I find it inconsiderate to myself and many others that you think you are one of the worst cases when you dont know what others have been through. you have given judgement to my case, which is fair, you cant be offended when I judge yours.
I’m not purposefully being a dick. I have gone through the same things in similar degree, as we all have. If you’re obese you are not taking care of yourself. Neither were you when you were stick thin. Fin did not change the fact that eating a huge surplus of calories and not exercising will cause your body to put on weight and be unwell. Balance yourself out. This weight is killing you and as bad as this situation is you cannot say you are just a victim here. You always have a choice. Stop messing around with drugs and start bettering yourself. You got unlucky like we all did. So what are you going to do about it? Look at your own title. “One of the worst pfs cases.” Dude you have no clue what others have been through. You’re just trying to get pity points. I’m sick of this mentality of who can be the biggest victim.
When are you going to suck it up and just admit that the only one who that’s going to improve this situation is you? You may be Ill and disabled, I truly feel bad for you. So was I. And I did something about it. Think about what you are spending your energy on. I can guarantee that you are spending way too much time in the kitchen if you have the energy to gain that much weight. I know this probably wont get through to you because we’re speaking emotionally, but I just really want you to understand that you can get better.
I don’t mean to be negative I’m sorry for offending you. Your post triggered me and I think it’s because I can relate but I’ve improved. Maybe I’m just lucky but I want to believe you’ll get better after that much time
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Again, what applies to you is not universal. This is nothing to do with what you judge from afar as someone’s “balance”, which means precisely nothing. It is a novel syndrome of variable sites and severities. This variablity is now well noted in literature, primary scientific findings in PFS patients, and over ten years of patient anecdotes. Our survey data additionally already shows clearly that saying “as we all have” is nonsensical. We all haven’t. Patients are in vastly differing conditions.
Clearly from your response you hadn’t even skim read Kan’s posts as his sexual symptoms and reactions were far beyond erectile dysfunction. Increasingly you are going into threads regarding severe symptoms insisting it is all “doom and gloom” or “negative”, when you are easily exhibiting the poorest most “negative” behaviour of any user here recently. You have been swearing and shouting at other users recently that other moderators have to repeatedly had to intervene regarding, and now your judgemental posts to Kan are completely unacceptable. There is nothing more “gloomy” for those of us putting immense effort towards desperately needed scientific progress to see someone like you attempting to sweep the real conditions of others - that you demonstrably do not understand - under the carpet because of your own poor psychological reaction to a heterogeneous reality. As Kan and Awor have said this place is a place for patients to share experiences and ideas without judgement no matter their condition, which varies considerably.
No matter how insightful and heroic you believe yourself to be, you simply do not have any etiological knowledge that doesn’t yet exist. You have no basis for you claims except a selection bias that other users have told you is inapplicable. What you are posting to Kan is cruel and baselessly judgemental, and you will stop judging others who you know nothing regarding. You can present what worked for you in the context of your specific case without insisting if it isn’t applicable to another they are somehow deficient.
Treat others with respect according to the guidelines that awor provided or you’ll not participate in this forum. This is your last warning regarding your behaviour. It is helpful to no one and worth no one’s time, least of all yours. Thanks.
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These people have no clue about the physical symptoms…I can attest to this and I have thought about sharing some entry in my food journal to show you that calories have nothing to do with the changes to your body that finasteride triggers…I have kept this journal every day since 2009, 10 years now and shows my eating, calories,mileage, and weight…I kept it as I ran several 5 and 10ks to adjust my body where I needed…While maintaining this same routine with no change from myself after stopping finasteride my body just started slowly changing while I fought the changes hard this no longer worked or had any affect on these changes and my weight just kept going up and I just kept getting bigger all while doing the samething…
It is as if something in your body is “gone” or “shutoff” and this happened to me slowly after stopping the drug…Something has stopped at a cellular level in the tissue, I assume androgen metabolisim as my hair loss did not return…My body slowly seem to manifest a series of changes around this alteration over the course of several months both physical and mental Now I would barely be recognizable to people who had not seen me in two or three years…Not to mention the physical weakness and sickness that comes with this state of disease preventing me from doing simple and easy things I used to love such as outdoor or yardwork…And I would call it a disease one day hopefully it will be classified as such an endocrine disease…As the endocrine system with normal levels of hormones but not responding to these hormones correctly in itself would be classified as an endocrine disease…I know of several others both here and on other sites who have these same symptoms after going through the so called “crash”…
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My situation was the opposite. In the two months after I crashed I lost over 14lbs in weight despite eating enough calories to maintain my original body weight. I went back into work and people noted how much weight I’d lost. At one point I started getting water retention on my stomach, that’s never happened to me before.
Kan has experienced weight gain. It’s easy to assume that he eating all the time just as it would be to assume I was eating much less in order to lose so much weight.
Despite us being connected by PFS it’s not so easy to put ourselves in someone else’s position and understand their situation.
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So many assumptions in so few lines. I’m sorry, I don’t have more time for you. I would recommend to spend your time at propeciahelp doing more constructive things. Good luck.
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you’re right, I am being an asshole and I apologize. I haven’t once heard of someone becoming morbidly obese after fin which is why I am hesitant to believe this situation was completely out of @kan’s control. but you’re right, this isn’t much different than me losing a ridiculous amount of weight after fin or like many others having the same experience. just opposite I guess.
you are misconstruing what I’m trying to get across. sure I didn’t do it in a “nice” way. I don’t believe in being nice for the sake of being nice. but there is a good point in not being an asshole. I don’t think people should be positive just because, rather that I think too many people on this forum fall into a victim mentality. and that will absolutely keep people here and cause more harm than I think anything else. as it has in my case as well. there is always something to be done, and I interpreted the massive weight gain as inaction, and this was wrong.
I stand by my claim that victim mentality is wrong and can be fatally damaging to those suffering. everyone always has a choice to improve. nothing is guaranteed, but there are always options moving forward. It’s vitally important to keep your humanity in this disease and I apologize for not being more empathetic. My posts come from a place of tough love and wanting people to better themselves because I needed to hear that to improve. that was one of the first big steps for me, but I understand not everyone is this way.
with all due respect to your forum I will no longer give this input on situations that I am not apart of.
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@kan very sorry to hear about your symptoms man. You would recommend to absolutely stay away from any type of hormone therapy? My hormones are severely out of wack, and I don’t know if they can be corrected by natural means…
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If your hormones were between the normal ranges, I would recommend to not touch any hormone, as very few have benefited from it, and many have ended up with worse problems.
If your hormones are out of the ranges, better check first with an endocrinologist before using any hormone.
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Update.
One of the things that I am noticing and I don’t understand at all is that before my last crash with the antipsychotic, I would get usually depressed after having an orgasm (that happened basically during my first 7.5 years of PFS, and as time passed it got better).
But now I tend to get a lot of anger after orgasms (A LOT). It is usually anger that I feel against those who forced me to take the antispychotic, but it is clearly an unhealthy amount of anger that makes me question if I my mental health has now new problems.
When I thought that things would never worsen again because I had learned the lesson of not touching dangerous drugs, then life teaches you again that the most unbelievable things can happen…
I see you say you orgasm so that is you masterbating right?
Yes, but these problems only happen when I orgasm, for example, if I masturbate but I don’t orgasm it doesn’t happen, or at least not that much.
When I masturbate without climax I get blueballs or my veins to the testicles get very inflamed & large. Was trying this as a way to produce erection since no cialis or penis pump.
One for me Ritalin is saved my libido. it really has attributes that reverse ssri induced and finasteride induced sexual dysfunction.
If i cease to use and quit methylphenidate my libido goes down dick became unresponsive.
I think Ritalin fuels your anxiety thats why you became much much worse.
And with your case i am sure that pfs hits very hard if there is an underlying mood disorder.
Also new generation anti-psychotic medications antagonize serotonin 2A receptors which helps with sexual function but old generation anti dopaminergic ones kills libido increases prolactin and destroyers your sexual health. What Ritalin does is the opposite of this.
I’ve had periods of anger, nothing good came from them.
Also our inner voice can also be negative and drive us to making poor choices. Think of the opposite thought to the negative one, even write them both down helps the mind see another solution/idea.