I have post-finasteride syndrome, a rare and untreatable condition. Recovery takes years, if it happens at all. Somehow, I have to hope and hold on

[finasteride_end]

To cut a long story short, it's like having low testosterone, except instead of not having enough testosterone, you have plenty of it but the cells in your body become desensitized to it. My sex drive is only a fraction of what it once was, my orgasm quality is heavily muted, my dick doesn't work properly and can't hold an erection any more, I can't sleep, and I have defeaningly loud tinnitus. It's unknown to the medical community, and even the doctors that know of it have no idea how to treat it

I wanted to be loved for so long. I tried so hard to fit in, get educated, get a job, and I was aspiring to move out of home when this happened so I could finally date without looking like a loser, and then I started going bald. I knew finasteride came with a rare risk of long-lasting side effects, but I never thought it would happen to me. I am autistic and in my thirties, I never had the chance to experience what sex is supposed to feel like, and now I have good reason to fear that I'll never be loved because I am sexually inadequate.

Sometimes people do recover after lengthy timeframes, often many years or decades. It seems to be completely random and doesn't really follow any sort of pattern. Worse still, you can recover and then relapse back into sickness again. This has happened to me three times already and each time I thought my nightmare was over. People can also gradually worsen over time for no apparent reason, which I fear is happening to me. My erections have actually gotten worse in some respects since the beginning, and I have no idea if I will get better over time or worse

Somehow, I have to find the strength to keep going to work, keep working out, keep trying to sleep despite the awful tinnitus, and keep the faith that someday I will be back to normal. But when bad days hit, I go into the worst panic you could possibly imagine and want to kill myself there and then. I already recorded a suicide note for my family. I wish I knew how to keep the flame of hope alive, but the twin demons of apathy and despair keep threatening to push me over the edge. I just don't know how to be hopeful given my unique circumstances. How the hell do I heal from this?

 

[ApparentlyNot]

You are really likeable and intelligent, and you've worked to overcome a lot, so to have something like this go so deeply wrong for you really breaks my heart. I'm sorry you had to experience multiple relapses into this state, I know that must be genuinely devastating, but I think the fact that you've had periods of notable improvement is a good sign. You asked how you can keep pushing forward and doing all the things to maintain and better your life while giving yourself time to recover, and I think finding a support system is crucial - I know it may cause some difficult situations and emotions, but if you have anyone you can tell about what you're going through, you should. If an actionable desire to run to someone specific and open up to them presents itself, I hope you do. Outside of that, I think directing yourself towards goals is also crucial. I think anyone who has subconsciously been driven by sexual and romantic desire for their whole life would feel immense grief and hopelessness at the perceived loss for that potential. But those things you do, taking care of your body and going to work, and those things you wanted to do, whatever they are, still serve an important purpose. You can still have deep special connections with others and you can still be loved regardless of whether you recover your sexual function entirely or partially. I really hope things get better or at the best least that the tinnitus doesn't bother you tonight so you can get some rest.

 

[finasteride_end]

Thank you for your reply, ApparentlyNot, and thank you NormallyNeurotic, for seeing and acknowledging me

I am at a very strange point in life. There's no cultural script for how to rebuild your life after this kind of setback, and I am struggling to imagine what could possibly be as fulfilling in life as the romantic love I craved but never got to taste. I feel totally disconnected from the rest of humanity

I have one close friend who has gone through though something similar, she has sexual dysfunction from antidepressants that never went away. Even she admits that her challenges are fundamentally different than mine, she isn't likely to be rejected like me but doesn't want a relationship without being able to enjoy the sexual side of things. Yet she's probably the main reason I'm still alive

I am currently sitting in A&E for the second time this week. I have tried and failed to get the urgent treatment I need to stop the tinnitus becoming permanent. I wonder if my problem is that I can't accept being an outsider in life, that I am in denial that I won't have a normal life and refuse the kind of life still possible for me. An outsider who can't marry or have a family, what good can such a person do, I wonder?

 

[MapleS]

I just wanted to say that I'm sorry for you and that you CAN be loved WITHOUT sex factor. I think that a true love is when you love a soul of the person and not their organs

 

[thegreatminderaser]

hey, i saw one of your posts the other day, i'm glad to see you're looking for ways to keep things going. i was thinking about you earlier this morning.

if it's of any consolation, my partner has ED and can't penetrate, but we have different ways of having sex (manual, oral, penetrating on my end, mutual masturbation) so i wanted to throw the fact that penetration is not be all end all- though i do respect if that's not substantial comfort, i don't know exactly what does/doesn't work for you. i just think it'd be good to reframe the idea to what ways you CAN perform sex. there are ways to navigate it.

struggling to connect with people romantically is difficult and i'm sorry to hear you're struggling with it. i'm never sure on how to reassure people on this. i do believe that you can be loved and appreciated beyond sexuality, connections are typically made before sexual interaction. personality tends to play a larger role. i hope i've provided some reassurance.

 

[finasteride_end]

I think like any loss there's just a part of you that feels a sense of amputation, you're just so deeply attached to this wonderful experience that you can't have now that you miss the ways in which it's still possible in diminished or modified form. I suppose since I never experienced real romantic love, I became incredibly cynical and fearful, imagining that it was something delicate that any minor fault could ruin - especially erectile dysfunction

The tinnitus is far worse than the ED overall. I can never get a break from it, while at least the ED only bothers me when I am horny and try to masturbate and discover that I can't. Just as I thought of my life in terms of before and after finasteride, I now think of it in terms of before and after tinnitus. At least the benzos make it quieter for a few hours, but I can't stay on them much longer. If I had either the ED or the tinnitus, I could cope, but the two of them together are ruinous

Acceptance is the key, but I've been unable to start that process because I always thought of acceptance as just surrender. Surrender to despair and misery, giving up on all hope of happiness. The idea of happiness in acceptance is utterly alien to me and I don't understand how it's possible. But I have to try. I am so exhausted that I neither have the energy for grieving nor for optimistic denial about what's happend to me

I wonder how I could ever find a romantic connection when my heart is so full of this baggage. Physical issues aside, who would understand or relate to the trauma I have from these health issues?

thegreatminderaser and MapleS - thank you both for seeing and acknowledging me. Like many other SS users, I am finding that much of what I needed to survive was just not to suffer in silence

 

[kaleisgreatinsalad]

To cut a long story short, it's like having low testosterone, except instead of not having enough testosterone, you have plenty of it but the cells in your body become desensitized to it. My sex drive is only a fraction of what it once was, my orgasm quality is heavily muted, my dick doesn't work properly and can't hold an erection any more, I can't sleep, and I have defeaningly loud tinnitus. It's unknown to the medical community, and even the doctors that know of it have no idea how to treat it

I wanted to be loved for so long. I tried so hard to fit in, get educated, get a job, and I was aspiring to move out of home when this happened so I could finally date without looking like a loser, and then I started going bald. I knew finasteride came with a rare risk of long-lasting side effects, but I never thought it would happen to me. I am autistic and in my thirties, I never had the chance to experience what sex is supposed to feel like, and now I have good reason to fear that I'll never be loved because I am sexually inadequate.

Sometimes people do recover after lengthy timeframes, often many years or decades. It seems to be completely random and doesn't really follow any sort of pattern. Worse still, you can recover and then relapse back into sickness again. This has happened to me three times already and each time I thought my nightmare was over. People can also gradually worsen over time for no apparent reason, which I fear is happening to me. My erections have actually gotten worse in some respects since the beginning, and I have no idea if I will get better over time or worse

Somehow, I have to find the strength to keep going to work, keep working out, keep trying to sleep despite the awful tinnitus, and keep the faith that someday I will be back to normal. But when bad days hit, I go into the worst panic you could possibly imagine and want to kill myself there and then. I already recorded a suicide note for my family. I wish I knew how to keep the flame of hope alive, but the twin demons of apathy and despair keep threatening to push me over the edge. I just don't know how to be hopeful given my unique circumstances. How the hell do I heal from this?

I also have similar condition PSSD and it is hard. I have bad days and I often think I don't know how much longer I wish to live like this. I have tried to record a video explaining this condition so my family may watch it one day. I could tell people a million times how I feel and what this is like but they will never understand. They will always say it will get better but then the question remains of what if it doesn't... what if I am stuck living like this for the rest of my life.

 

[continuing]

To cut a long story short, it's like having low testosterone, except instead of not having enough testosterone, you have plenty of it but the cells in your body become desensitized to it. My sex drive is only a fraction of what it once was, my orgasm quality is heavily muted, my dick doesn't work properly and can't hold an erection any more, I can't sleep, and I have defeaningly loud tinnitus. It's unknown to the medical community, and even the doctors that know of it have no idea how to treat it

I wanted to be loved for so long. I tried so hard to fit in, get educated, get a job, and I was aspiring to move out of home when this happened so I could finally date without looking like a loser, and then I started going bald. I knew finasteride came with a rare risk of long-lasting side effects, but I never thought it would happen to me. I am autistic and in my thirties, I never had the chance to experience what sex is supposed to feel like, and now I have good reason to fear that I'll never be loved because I am sexually inadequate.

Sometimes people do recover after lengthy timeframes, often many years or decades. It seems to be completely random and doesn't really follow any sort of pattern. Worse still, you can recover and then relapse back into sickness again. This has happened to me three times already and each time I thought my nightmare was over. People can also gradually worsen over time for no apparent reason, which I fear is happening to me. My erections have actually gotten worse in some respects since the beginning, and I have no idea if I will get better over time or worse

Somehow, I have to find the strength to keep going to work, keep working out, keep trying to sleep despite the awful tinnitus, and keep the faith that someday I will be back to normal. But when bad days hit, I go into the worst panic you could possibly imagine and want to kill myself there and then. I already recorded a suicide note for my family. I wish I knew how to keep the flame of hope alive, but the twin demons of apathy and despair keep threatening to push me over the edge. I just don't know how to be hopeful given my unique circumstances. How the hell do I heal from this?

Thats hard, i must say, and belive is no bs, you enduring this makes you strong, i know about the bad days and all, but youre still here, that means something.

What i can say as well is that, sex is not only about the act but the connection, if a person likes you, like really likes you, they will undertand and work with you with this.

 

[finasteride_end]

It's true, but I was almost fully recovered so many times that I got my hopes up that maybe I could have sex like a normal person someday. Back in September I was almost there, erections 70% of their old strength, albeit with very low libido.

But in the last week or so I have crashed back to being completely impotent, which is beyond frustrating since I can't use Viagra or Cialis now due to the risk of worsening that horrendous tinnitus. I'm no closer to permanently recovering than I was one year ago.

I have recovered from this ultra-low state before, but I'm afraid I won't recover as strongly this time. Every time I get over a crash like this I'm worse off than my previous recovery high and things have gone backwards over time

I've been coasting on the hope of persistent recovery for the past year. I'm almost out of road. The disappointment is unbearable, and now I have awful tinnitus too. How on earth do I overcome these setbacks?

 

[etherealgoddess]

To cut a long story short, it's like having low testosterone, except instead of not having enough testosterone, you have plenty of it but the cells in your body become desensitized to it. My sex drive is only a fraction of what it once was, my orgasm quality is heavily muted, my dick doesn't work properly and can't hold an erection any more, I can't sleep, and I have defeaningly loud tinnitus. It's unknown to the medical community, and even the doctors that know of it have no idea how to treat it

I wanted to be loved for so long. I tried so hard to fit in, get educated, get a job, and I was aspiring to move out of home when this happened so I could finally date without looking like a loser, and then I started going bald. I knew finasteride came with a rare risk of long-lasting side effects, but I never thought it would happen to me. I am autistic and in my thirties, I never had the chance to experience what sex is supposed to feel like, and now I have good reason to fear that I'll never be loved because I am sexually inadequate.

Sometimes people do recover after lengthy timeframes, often many years or decades. It seems to be completely random and doesn't really follow any sort of pattern. Worse still, you can recover and then relapse back into sickness again. This has happened to me three times already and each time I thought my nightmare was over. People can also gradually worsen over time for no apparent reason, which I fear is happening to me. My erections have actually gotten worse in some respects since the beginning, and I have no idea if I will get better over time or worse

Somehow, I have to find the strength to keep going to work, keep working out, keep trying to sleep despite the awful tinnitus, and keep the faith that someday I will be back to normal. But when bad days hit, I go into the worst panic you could possibly imagine and want to kill myself there and then. I already recorded a suicide note for my family. I wish I knew how to keep the flame of hope alive, but the twin demons of apathy and despair keep threatening to push me over the edge. I just don't know how to be hopeful given my unique circumstances. How the hell do I heal from this?

Praying for you. I pray for your illnesses to fully go away and never come back. Sending love to you God really does miracles like it did for me. But it's ok if you don't believe.

 

[finasteride_end]

I went to confession today for the first time in four years. In truth I am unable to convince myself god exists (suicide would be unthinkable if that were true), but it's also true that there are no atheists in foxholes. I have a new sense of perspective on Jesus healing the sick - once you've been there you really see the purpose religion evolved to address

I thank you for your prayers

 

[finasteride_end]

I also have similar condition PSSD and it is hard. I have bad days and I often think I don't know how much longer I wish to live like this. I have tried to record a video explaining this condition so my family may watch it one day. I could tell people a million times how I feel and what this is like but they will never understand. They will always say it will get better but then the question remains of what if it doesn't... what if I am stuck living like this for the rest of my life.

Basically the situation I am in now. Still completely impotent, no signs of improvement. The last time I was this bad I got better, but I have no way of knowing if that's going to be the case this time

When my symptoms improved last time, I thought my body was healing. But I am realising now that although my symptoms improved, the underlying condition never did. Even if I get better a second time, I have to live knowing my sexual health could collapse again at any time with no guarantee it will bounce back again

On Reddit there was a guy who fully recovered and crashed back to square one 13 years later. What an absolute curse to live with

I feel incredibly depressed. I don't have the willpower right now for another suicide attempt. I am safe and comfortable living with my parents without a job, but all sense of joy and purpose is gone from my life

It's kind of pathetic because it's not just about being loved. Deep down I also just want fucking sexual satisfaction like I always dreamed able since I was a teenager. I still can't believe that part of my life story might be over

The one bright spot is that my doctor now believes that post finasteride syndrome is real and that I have it, and is willing to put me forward as a candidate for trimix. I will be given a prescription for it and shown how to use it in the spring if I don't recover. With Viagra off the table because of my tinnitus it's the only other way I can get my sexual functioning back temporarily

But trimix has its risks and isn't safe to use daily because it can cause scarring of the penis tissues. Still, it's my only hope. Will I ever have the courage to date and then tell the woman that this of all things is the only way I can penetrate her?