Understand that all do not have the resources nor the time to keep convincing doctors. Of all the doctors (even the best) do not agree to PFS and they think that we have only take a drop in the ocean when compared to the dosage used to treat enlarged prostrate patients.
I lost hope that any doctor will help or can cure and neither the studies are encouraging.
Your right. I think 95% of the people here do not have these resources and it’s part of the problem. It’s a horrible never ending cycle where people sick. It was probably caused by finasteride so they start this journey of taking pills, waiting a week or 2 to see how they feel and then jumping on to some other hormone or supplement. There is no science behind the methodology. I see it constantly on this site. I can tell you from experience with something like TRT, if I change my dose I have to wait 6-8 weeks to definitively tell how that new dose Effects my body. (Trt is a long journey) I’m not suggesting TRT will fix everyone here but it’s an example of the concept of steady state and half lives and how drugs effect the production of other hormones in your body and how you have to wait to see how your body reacts abs use blood tests to monitor all this. Me personally, i would have driven hours to see a specialist and I know a few. I see one in nyc.
I’m afraid this is flawed logic given the full and broad scope of the clinical picture of PFS. It implicitly apportions blame to patients for continuing to suffer from a significant and devastating physiological disease; “you’re continuing to suffer to the extent that you do because you’re just not working hard enough man”. That isn’t acceptable on this forum, which exists in part to provide support for sufferers.
As per the paper authored by the administrators
The diverse symptoms of PFS and their potential severity are not adequately appreciated by clinicians nor in medical literature (Traish, 2018). PFS presents heterogeneously, with variably severe symptoms from a broad constellation, in isolation or combination. Despite the significant interindividual differences in presentation, there are key commonalities in the disease behaviour. The health of the most severely affected patients is so profoundly impacted that they cannot continue their lives in a meaningful capacity. PFS is frequently causative of relationship breakdown, disability preventing work, isolation and suicide. Although of controversial practical application, Maslow’s hierarchy of needs is a pervasive categorisation of motivating human needs (Kenrick et al., 2010). PFS, by this measure, can prove ruinous to the attainment of basic physiological needs in sleep and sex, safety needs in emotional security, financial security and health, and the interpersonal needs of friendships, intimacy and family.
Heterogenous presentation: Differing symptoms and severities across patients with variable site-specific involvement.
You state that implying you must be or have been at the severest end of this disease in all symptomatic domains. Your post history suggests this isn’t the case. You registered on this website 12 days ago. Your first thread posed the question “Do I have it post finasteride syndrome”. You posted things like this
It’s great to hear you’re doing so well, genuinely. However, it’s clear that, in several symptomatic domains, you are at the milder end of the PFS spectrum (which can of course still be life changing and devastating). I can see from some of your other posts that you had a really, really bad time mentally - for which you have my sincere and deep sympathy - but that now that has largely cleared up. You’ve posted
It’s imperative to understand that many patients experience muscle wastage during and after their crash; that fatigue and muscle weakness can be so powerful that even a light jog would be out of the question, much less packing on muscle lifting weights in the gym; and that, for some patients, their symptoms worsen following exercise. It’s great you are able to work out “non stop” and that you attribute your improvement to it but for many PFS patients, even being able to exercise properly isn’t possible.
5 days after signing up here, you made this thread
You also posted
Just to contrast, over two years since crashing, I picked up the kettle the other day to pour the water from it and so feeble is my strength now that it felt as though my arm was being ripped from its socket. This would be astonishing for pretty much any 34 year old male but it’s especially so for me; prior to developing PFS I was a 3-4 times a week gym goer of 6 years and was strong and muscular. I can no longer go to the gym and the most exercise my strength levels and fatigue permit is a good walk.
Again, It’s great that you easing your own anxiety helped resolve some of your sexual dysfunction. However, some patients here have suffered tissue loss to their penis and simply cannot achieve an erection capable of penetration.
There is of course nothing wrong with being positive and I would urge you to continue posting about your improvements should you be fortunate enough to continue to have and/or maintain them. However, I’m coming down quite hard on your “It’s just a matter of putting in the work” for a serious reason. It’s really, really important that as a patient community, everybody recognise that members are in differing states of severity and that what is effective for one, such as vigorous exercise, may not even be physically possible for another. If basic facts about our situation aren’t being fully understood amongst the patients themselves, it’s going to be very tough to get the wider world to fully appreciate what’s happening here.
I’m sorry if I said anything that would make anyone feel less then or down anyone else’s experiences here . I started to recover a little while before I joined this. I was having anxiety about things still thats why my first post stated along the lines of do I have this syndrome . I started running within the same time frame I joined this a noticed huge improvements to my life . I felt happier more drive for life if that makes sense . I know my post are all over the place to by the way… And I did have it pretty bad to start . And I guess you are right I may not have had such a severe case as others do but as you stated it is still debilitating. I did loose a job I almost lost my relationship and I contemplated suicide for a while . And I was not trying to be rude or anything by saying put in the work . I was honestly just trying to be postive . But I do see what you are saying and I understand why you would come down hard on that statement. I apologize. I just wanted to add that for a while I would feel way worse the day after working out . Almost like the life force had drained from my body . So I understand what you mean that people feel worse after a light jog or working out. But sorry to offend anyone . I will think before I post anything that would or could be detrimental to this cause .
I think it’s similar to me.
When PFS first developed the disease, the suicidal impulse was so severe that I couldn’t do anything at home. Fortunately, taking antidepressants helped me, so the other symptoms remained the same, but I had a strong mentality.
After that, I went to the gym and enjoyed weight training. Frankly speaking, I’ve improved a lot in squats, deadlift, and benchpress, and I’ve gained a lot of muscle, but it hasn’t really affected my sexual function.
After COVID-19 was created, I couldn’t go to the gym much, and I started running in the nearby park. I didn’t think about sex function and it was just to lose fat. I was jogging, not a sprint.
After about three months, I got an erection one morning. And I felt that masturbation was harder than usual and the range was longer. And I got a good erection at night. I thought it would be possible to have a relationship with a woman.
Unfortunately, I’m not good at running these days, so I can’t pronounce it well again. So I’m going to run again from today.
I also feel the penis and testicles contract after running. I think you’re going through a similar PFS as me.
Honestly, I don’t know yet whether running affected my sexual function or not yet. But I think running has had a good effect on my current condition, but it doesn’t have a bad influence, so I’ll keep running.
Yes ive had more satisfying sex . Ive honesty have been making a recovery for the past two months . Just keep doing what your doing and don’t give up. Running has definitely had a big impact on my depressive symptoms . And in turn for my case that helps with my sexual stuff more . Sounds like you are making some good strides
Yes I am having a very satisfying experience that I have missed in the last 4 years. And importantly my refractory period is short and I am not afraid of having it multiple times (as of now refraining from overdoing things). Earlier I was always afraid before sex sessions as you have things back on your mind.
Sprinting has helped a lot and I primarily noticed changes to my penile structure. Although some days you may be off I still do not feel it to be disconnected and is not cold (this was one of the primary reasons for panic attacks during sleep - cold penis, disconnected and rotating on axis)
I feel there is something connected to sprinting and it is working for me. Seeing your experience I am more motivated and I feel this is making a unique difference which exercising (heavy lifting) never helped with sides although improved mood.
One suggestion give by my doc was never to over exercise as whatever test the body generates will be wasted in building muscles. He suggested to do mild exercising to retain the free t in body so it is not utilized by building muscles. So, I am not sure how much it makes sense but nevertheless I will continue sprinting and after 4 months of sprinting I have observed that I am not going back to my sides.
Very happy that you are experiencing positive sides of running. Please also try short bursts of sprint in your routine but do not overdo and restrict to 4 or 5 short bursts of sprint. Please keep sharing your experience
Not a complete yes but yes overdoing the exercises be counterproductive. That may be the reason why we did not get the same results as running/sprint.
Even in studies, I have often seen that High Intensity interval trainings (HIIT) provide more benefits than just heavy lifting (I am not contradicting anyone but it is just my view)
And sprinting being one type of HIIT looks like is working for me. And the results are not reversing. So, even when exercising it is better to do HIIT to point of failure only for 30-40 mins. (My thoughts)
My estrogen is weird and too low. On a basic estrogen test I show as normal but I happened to have a good doctor who gave me an ultra sensitive e2 test When I was in my 30s most doctors don’t look at estrogen and men need an ultra sensitive test when you do any testing. Mine was low teens … like 13. When my estrogen gets low I feel lifeless and my dick is cold. Can’t sleep, depression, moody as hell and no energy. My penis doesn’t work properly and it feels almost as if it’s not there. After being on testosterone for 4 years, I have accidentally lowered my estrogen below 10 a few time using anastrizole. All my PFS symptoms Came roaring back. My testosterone was not horrible and at around 350… my free testosterone was low. That is enough to get legal testosterone from places like defy medical
You say you had/have all of the side effects but I didn’t see you mention anything about changes to your skin, changes in fat deposits, significant cognitive impairment (memory, reading, attention), temperature regulation, body/head hair, numbness, tingling, or sensory problems. Are you able to give insight on those?
Once your testosterone goes for a toss (specifically free t), you need not mention them by default you will have significant cognitive impairment (memory, reading, attention) - temperature (cold penis), numbness and sensory problems (rotating on axis). These are just the after affects of low free t. In my case as I mentioned my free t dropped drastically after using AI (read earlier posts) and I had all the sides.
So, I believe there need not be explicit mention of atleast the above if you are impacted with fin. I did not specifically notice skin changes and fat deposits (as I was always within weight limits although i am not muscular I have a good physic).
So, are you looking for any specific sides. Other sides like vision issues and not I have not noticed as highlighted earlier. Lack of attention and motivation is primarily because you always have a disconnected penis and it play back on your mind and you cannot get over it how hard you try to deviate. I have tried always to distract my self but nothing helps apart from the hormone getting corrected due to therapeutic efforts. That is the only solution to get your free t up (I am not saying it will solve but it will help with reducing the sides like attention, lack of motivation etc). This my opinion
My entire dick and genitals turned into cold, dry rubber along with the rest of the skin on my entire body. My libido and erection quality is shot to shit and I can confidently tell you that is the LEAST of my worries, along with many other guys here. I can also say with extreme confidence that if issues with your dick and sex performance is what you deem PFS solely to be, you are horribly mistaken and a lot of guys here will not take you seriously.
And in your previous post you again only listed symptoms with your penis and genitals, but you claimed in your initial post “you name it, I have it”. That is why I probed and it seems that you have only sexual sides with none of the cognitive, visual, or physical issues.
I am not here to pass any judgement or misrepresent facts. I am sorry if you say that
My libido and erection quality is shot to shit and I can confidently tell you that is the LEAST of my worries, along with many other guys here.
I do not think what is IMPORTANT to you is IMPORTANT to all. Are you ok if you recover from others and not the sexual sides ? For everyone the LEAST are the other sides if they have sexual side effects. The central for all the issues is sexual sides, we would not have been on this forum if it was not for those. If it was only skin discoloration, lowered temp, numbness, tingling or vision problems etc without sexual sides, do you think we will ever have this forum. This is not to discount other side effects or disrespect the problems faced by others.
I hope your probe got the answers and neither am I forcing to follow my regime (and i dont mind if none take it seriously as there is nothing that I am going to loose). It is just how I am recovering and may help others which might be of interest.
There are plenty of users on here with their chief complaints being non-sexual symptoms. Some guys are practically disabled and not able to work and it’s not because their dick is screwed up. I can tell that you haven’t experienced the crazy physical or mental aspects of PFS because you have no clue what you’re saying. Best wishes.
Sure man, no doubt. I know it’s devastating. But what I am talking about is cognitive impairment that feels like you’re fucked up on drugs and can’t come down. Like you’re detached from reality and it never improves. Difficulty reading and following conversations. Physical changes where if you exert yourself with basic exercise or yard work that you feel the effects for 2 or 3 days afterward or even become ill from it. Total changes in your appearance and how your body operates. If you’ve spent any time at all looking through threads on this forum then I’m sure you know what i’m talking about. The condition varies far and wide. My main point is the most debilitating and life-altering changes from taking Finasteride probably aren’t lowered libido and erectile dysfunction. I am sure that many, many users on here would have to agree.
Keep in mind this is coming from a guy who has all of the sexual side effects.
This condition is very crazy. We need to know what is going on. The same old things are being tested. If you stop to read this entire forum the amount of conflicting information is immense. Each says something based on their own experience. We really need to know the mechanisms of this disease. Currently, there are mere assumptions based on symptoms and very few existing studies. It is important not to stand around waiting for a cure, but it is also important to invest in real science alongside personal efforts. Know what’s going on to act in the right direction. People are content with little, with small improvements … life is to be lived in its entirety. People are investing time on this site and research. Let’s colaborate.
how much do you want your life back? all efforts are necessary. taking substances on your own is very little. this condition is very complex and needs to be studied!
It is a shame that the survey is not yet completed due to lack of participation!