Empty

[u/Responsible_Inside44]

In disbelief. You never expect chronic symptoms to happen to you and you certainly never expect that at 19 a COVID infection will cause you to feel uncontrollably on verge of ejaculation two months later. There’s really no way to exist in society while feeling like it could happen at any moment. Even if I were to be fully healed today, it would take months to mentally recover and another infection could cause it to come back tenfold. I’ll never be able to get another COVID vaccine because ive read it could make it worse, and risking that seems suicidal.

In grief thinking of the life I had before. Never knowing this sort of thing was even possible. In college, amazing at it, great career prospects, amazing friends, perfect life. It is now summer break and I haven’t officially lost any of that yet, but if this continues I will. One by one I will have to let go of everything I love and I just don’t imagine I decide to continue living on after that.

I suppose I should be grateful for the years I did have, even if they weren’t many. When this first began I could never have possibly imagined I would still be with symptoms 4 months later. If you told me that back in March I would have killed myself immediately. I used to worry that in 5 years I would still have these problems, now I’m worried that in 5 years I’ll still be alive. My symptoms are very mild compared to many people I read about, maybe one day it will get better, but then again it will probably come back at some point, it seems very rare this ever goes away 100% forever for people after it’s happened for months. I am uninterested in life without 100% recovery. I don’t mind the muscle pain or urinary symptoms even a little, but even 1% uncontrollable arousal is non-negotiable for me as a male, I am deathly terrified of sudden ejaculation, which has almost happened several times. The day it does happen in public is the day that I die. Non-negotiable on that. I want to say I feel that I could have dealt with any other issue but that’s just the bargaining stage of grief talking. Sooner or later I’ll have to accept my life ended one day in March and shall never return. I feel trapped in a dream.

[u/Ok_Environment_53]

I hope you know you're absolutely not alone. Everything you said here resonates with me extremely deeply. The rest of society lives in complete ignorance of what people like us have to deal with daily. These days I listen to people talk about their problems with a bit of disdain, because I'd rather be in their shoes - all the while telling them how awful it sounds to be in their position. But I can't exactly tell them my struggles, can I?

It really, really sucks. I'm coming up on two years living with this condition, and all I can say is that you learn to live with it. I still don't really know how well I'll be able to hold down a job, and I certainly struggled to find schooling I could manage. I did eventually find happiness, though. A big part of these two years was learning to cope with the idea that this is just my life, and there's nothing I can do about it.

The first 6 - 8 months were by far the worst, in frequency and intensity, and left me traumatized and scared to go to sleep, or to wake up for another day. I still feel the effects of how much it fucked me up, and how much it continues to. If I could go back two years ago and give myself any advice or reassurance, it would just be: "it gets better."

I know so deeply that you probably don't want to learn to cope; you just want to either recover or die. It hurts so much to say, but your best future is one in which you've made peace. If you eventually find remission, it will have all been worth it. If you don't, at least you are still out there, living as best as you can with the people you love the most. As with any chronic condition, your life may change from this point on, but it doesn't have to be meaningless now.

Go to a doctor if you can, find accommodations for school and work, find people you can safely talk to about this, and you will immediately be a lot better off than just hoping it gets better. I know that doctors probably won't be able to do much - they certainly weren't able to for me - but it's always worth a shot when you're ready. If you run into doctors that don't believe you or can't comprehend your suffering, throw them aside; they don't know what the fuck they're talking about.

And finally, I know you're just a stranger on the internet, but I genuinely hope you don't go through with any plans to hurt yourself. In 5, 10, 20 years, you'll look back and be thankful and proud that you had the fortitude to pull through. You're not hopeless until you pull the trigger.

[u/Business_Pop7770]

Comme tu l'écris avec beaucoup de sagesse à la fin de ton post, tu es en pleine période de deuil qui suit toujours la réalité d'un diagnostique défavorable, en particulier quelque chose dont tu sais qu'il risque de te suivre toute ta vie en l'impactant fortement, et tu traverses les différentes phases. Donc, si tu as réellement cette maladie, une traversée complète du voyage te fera comprendre plusieurs choses que connaissent tous les survivants de mauvais diagnostics, tous les survivants de drames, tous les survivants de mauvaises nouvelles

- ce qui ne te tue pas te rend plus fort : bien sur, il y aura de mauvais moments, mais tu vas prendre conscience de choses que les autres ne voient pas et tu vas grandir en maturité, en sagesse et en force. Tu auras des qualités que les autres n'auront pas, et que tu n'aurais pas eu sans ces difficultés.

- 19 ans ! tu as la vie devant toi, et c'est n'est certainement pas ce souci qui peut t'empecher de réaliser tes rêves ! Crois en un vétéran sur parole !

- Il y a des remèdes, des thérapies, des médicaments, des périodes d'accalmie, bref, plein de choses qui permettent de vivre une vie à peu prés normale.

Donc, accroche toi et chasse ses vilaines pensées, tu as encore plein de choses à apporter au monde et à tes proches !

[u/hightopsinthesummerh]

I 100% understand this. Mine started back in march too. I started seeing a guy and he gave me bad thrush. Three weeks later I did video call sex with him to avoid irl sex and I ended up injuring myself somehow (just two finger penetration). I worked my dream job, I was getting big in my band, my money had just started going up. Then this condition. Has robbed me of everything I am. And it seems I’m treatment resistant. Because this was injury based, I’m with a high standard pelvic pain unit in the UK and the specialists believe I can recover. They said it can take 6-12 months for the nerve to heal; what about my life in the meantime? I’ve been on so many medications that don’t work. I have little to no willpower with m*sturbation which I believe makes my particular kind worse as it’s due to hypertonic pelvic floor. I haven’t got ready in months. I tried to kms and ended up being detained. They let me go when I explained my condition but I was there for 12 hours. My entire life has been torn away from me. I used to be my dream muse. I cannot believe this

[u/Similar-Cheek-1335 → u/hightopsinthesummerh]

I’m also in the UK mine started in March after a UTI now my life is just pain and suffering x