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