NSFW A rare disorder has robbed me of sexual function

[omensetter]

A month and a half ago I experienced sudden numbness that affected my penis. It is now a dead, rubbery thing that responds to nothing. No libido, no sexual sensation. Before this happened I had a very active sex life with several partners. I do not wish to live the rest of my life, or even another year, as an involuntary asexual. I have taken two months off of work for probably useless doctor visits. If I have no changes to my condition by the end of the month I plan to die by SN. Every day I have had this has been absolute mental torture. Even casual mentions of sex trigger intense feelings of grief for what I can no longer have. The world has gone grey and i am not the same person anymore.

 

[metfan647]

I'm really sorry to read this. This must be a very very difficult time. May I ask if you've been referred for any further support?

 

[omensetter]

I am lucky to have a very supportive family. They left me a heartbreaking note in the hospital during my second stay in September — you are surrounded by love, you'd be cured if love could heal you. I really wish that was the case. Psychiatrists and most doctors don't have a clue how to handle a case like mine, because I am not depressed, or at least I wasn't. I just have a condition that I want euthanasia for.

Every night my dreams torment me with sexual scenarios and nightmares born of my own ruminations.

 

[Praestat_Mori]

Welcome to SaSu!

I'm sorry you have to go through this.

 

[darksouls]

you are welcome
I am very sorry for your situation

 

[whywere]

It is so nice having you here as a new family member and a good friend, WELCOME!!!!

My heart and soul go out to you with your condition; however I am wishing you the very best with the doctors that they can find a way to help you.

Again, WELCOME!

Walter

 

[rba]

I'm so sorry you have to go through this.

I'm not sure if you're aware what caused this, but it sounds like it could be PSSD (Post-SSRI Sexual Dysfunction). It's a condition where sexual side effects continue for long after stopping SSRI consumption. It can happen with some other medications like Finasteride and Accutane. There's no agreed treatments but it often does improve over months and years

 

[flutebloom]

I know it's no consolation but im going through something similar. Have permanent side effects from a medication I got almost a year ago. Don't have normal sexual function anymore. It sucks because I also enjoyed sex.

 

[rba]

I too still have side effects from a single pill of Sertraline that I took (against my will) about 8 months ago. A lot of us who seek help end up getting exploited and sold these toxic drugs.

 

[Grav]

Hope they can find something. I'm in a similar boat but not sure of the cause, think lifestyle. I've come off my meds to take that variable out and am now on Testosterone injections but the ed pills don't do much. Next step is injections but not keen on it so who knows.

 

[omensetter]

To all those who are wondering, the condition is known as hard flaccid syndrome. I don't believe there is any real understanding of this syndrome and there are very few cases of a complete cure. In my case I don't believe I will ever get better.

 

[MyShadow]

A month and a half ago I experienced sudden numbness that affected my penis. It is now a dead, rubbery thing that responds to nothing. No libido, no sexual sensation. Before this happened I had a very active sex life with several partners. I do not wish to live the rest of my life, or even another year, as an involuntary asexual. I have taken two months off of work for probably useless doctor visits. If I have no changes to my condition by the end of the month I plan to die by SN. Every day I have had this has been absolute mental torture. Even casual mentions of sex trigger intense feelings of grief for what I can no longer have. The world has gone grey and i am not the same person anymore.

Brother, I hope you find a solution to this problem soon.

 

[Golden]

Psychiatrists and most doctors don't have a clue how to handle a case like mine, because I am not depressed, or at least I wasn't. I just have a condition that I want euthanasia for.

My condition is different to yours, yet I've very rarely related to anything as much as I relate to you. The part I quoted you on I have almost word for word written on my suicide note, it's crazy

 

[claracatchingthebus]

A month and a half ago I experienced sudden numbness that affected my penis. It is now a dead, rubbery thing that responds to nothing. No libido, no sexual sensation. Before this happened I had a very active sex life with several partners. I do not wish to live the rest of my life, or even another year, as an involuntary asexual. I have taken two months off of work for probably useless doctor visits. If I have no changes to my condition by the end of the month I plan to die by SN. Every day I have had this has been absolute mental torture. Even casual mentions of sex trigger intense feelings of grief for what I can no longer have. The world has gone grey and i am not the same person anymore.

Have you read this https://pmc.ncbi.nlm.nih.gov/articles/PMC12185307/ and tried the protocol listed here?

I am so sorry you are going through this. There should be euthenasia for awful situations and there just isn't. I would at least try the protocol listed there, but perhaps you have already.

Some people said in that paper and online that it could be a result of a different kind of injury, and when one person did physical therapy, took a med like cialis and did some sort of other thing (wave pulse something? I didn't totally understand it) but that person got back to normal. You probably the read the study already though right?

The study came out in 2024, it's barely over a year old. Are you seeing expert specialists or local urologists who may not be as familiar?

 

[omensetter]

Have you read this https://pmc.ncbi.nlm.nih.gov/articles/PMC12185307/ and tried the protocol listed here?

I am so sorry you are going through this. There should be euthenasia for awful situations and there just isn't. I would at least try the protocol listed there, but perhaps you have already.

Some people said in that paper and online that it could be a result of a different kind of injury, and when one person did physical therapy, took a med like cialis and did some sort of other thing (wave pulse something? I didn't totally understand it) but that person got back to normal. You probably the read the study already though right?

The study came out in 2024, it's barely over a year old. Are you seeing expert specialists or local urologists who may not be as familiar?

I've been trying everything I possibly can. PT, muscle relaxants, I'm trying ketamine therapy this week, I had a consult with a doctor who authored a paper on the syndrome last week, I've seen neurologists and urologists. The more I try, the more hopeless I feel. Strangely, I seem to have lost some sensation in the rest of my body as well — I am no longer ticklish anywhere, for instance. My own body feels foreign to me. I already was dealing with a lot before this — now it's too much to bear.

 

[claracatchingthebus]

The one paper i listed mentioned a machine.
LiSWT provides a non-invasive method to induce mechanical stress and microtrauma in targeted tissues [9]. This, in turn, can lead to a series of biological reactions, notably neovascularization by angiogenic factors [7]. The cascading effect of angiogenic factors released due to the therapy might improve blood supply and alleviate some of the symptoms of HFS [10–12] (Fig. 1).

 

[omensetter]

The one paper i listed mentioned a machine.
LiSWT provides a non-invasive method to induce mechanical stress and microtrauma in targeted tissues [9]. This, in turn, can lead to a series of biological reactions, notably neovascularization by angiogenic factors [7]. The cascading effect of angiogenic factors released due to the therapy might improve blood supply and alleviate some of the symptoms of HFS [10–12] (Fig. 1).

Shockwave therapy tends to be an ED treatment which I don't have. I can get hard and have sex, it just loses 90% of its pleasure on my side.

 

[DreamCoper]

I was born with a facial congenital defect that for obvious reasons means I have never had sex and almost certainly never will, welcome to the club I guess? In all seriousness I am very sorry this sounds horrible, does it effect your hormonal health as well?

 

[omensetter]

I was born with a facial congenital defect that for obvious reasons means I have never had sex and almost certainly never will, welcome to the club I guess? In all seriousness I am very sorry this sounds horrible, does it effect your hormonal health as well?

I don't think it affects my hormones. but it does result in a constantly cold penis that is semi-firm and contracting, which is an embarrassing nightmare to deal with.

 

[Ashu]

A month and a half ago I experienced sudden numbness that affected my penis. It is now a dead, rubbery thing that responds to nothing. No libido, no sexual sensation. Before this happened I had a very active sex life with several partners. I do not wish to live the rest of my life, or even another year, as an involuntary asexual. I have taken two months off of work for probably useless doctor visits. If I have no changes to my condition by the end of the month I plan to die by SN. Every day I have had this has been absolute mental torture. Even casual mentions of sex trigger intense feelings of grief for what I can no longer have. The world has gone grey and i am not the same person anymore.

I'm completely sympathetic, I would feel exactly the same way. I hope you succeed.

I am lucky to have a very supportive family. They left me a heartbreaking note in the hospital during my second stay in September — you are surrounded by love, you'd be cured if love could heal you. I really wish that was the case. Psychiatrists and most doctors don't have a clue how to handle a case like mine, because I am not depressed, or at least I wasn't. I just have a condition that I want euthanasia for.

Every night my dreams torment me with sexual scenarios and nightmares born of my own ruminations.

Dont talk to people about it, they'll try to stop you.

I too still have side effects from a single pill of Sertraline that I took (against my will) about 8 months ago. A lot of us who seek help end up getting exploited and sold these toxic drugs.

These fucking reptilian psychiatric Nazis deserve to suffer the worst of their own sick pseudo-medicine.

 

[vorteksrbija]

A month and a half ago I experienced sudden numbness that affected my penis. It is now a dead, rubbery thing that responds to nothing. No libido, no sexual sensation. Before this happened I had a very active sex life with several partners. I do not wish to live the rest of my life, or even another year, as an involuntary asexual. I have taken two months off of work for probably useless doctor visits. If I have no changes to my condition by the end of the month I plan to die by SN. Every day I have had this has been absolute mental torture. Even casual mentions of sex trigger intense feelings of grief for what I can no longer have. The world has gone grey and i am not the same person anymore.

Did that happen out of nothing? Like, is there a known cause?

 

[WhiteRabbit]

Have you been to pelvic floor physical therapy? It could be a muscle issue.

 

[omensetter]

Did that happen out of nothing? Like, is there a known cause?

I have no idea what caused it. Maybe from a minor fall a month ago that caused tingling in my foot and hands.

Have you been to pelvic floor physical therapy? It could be a muscle issue.

Just finished session 3 with no improvement. I've thrown everything at the wall and nothing sticks. Deep down I know I'm just fucked and will live this way forever, unless I gather the courage to make it all end.

 

[cemeteryismyhome]

Very sorry for the distress you're having. Some people would consider it a blessing. Maybe you'll get used to it and find it's not so bad, seriously.

 

[vorteksrbija]

Very sorry for the distress you're having. Some people would consider it a blessing. Maybe you'll get used to it and find it's not so bad, seriously.

I think that is not what he wants to hear

 

[cemeteryismyhome]

I think that is not what he wants to hear

Sorry, I meant no offense. I'm bad at this, my apologies, sincerely.

 

[PI3.14]

Do sorry man you're dealing with this. Intimacy, although I've never experienced, is probably very important to the vast majority of people.

I don't blame you one bit for considering to end it, I hope you find treatment though.