Who do you tell about this?

General Discussion
#1

We have been thrust into having serious health problems that are not only not understood by the medical world but deeply embarassing, although I guess some of us no longer care about embarassment. Our situation requires support and understanding yet the very nature of our problems can make it difficult to tell others. Even leaving aside the sexual stuff, letting spill details of your mental and physical sides could even jeapordise your career. I personally told people (though not employers) early on because it was so serious I had nothing to lose, sometimes I regret being open but I felt it had to be done. I guess the problem is if you mention propecia you are a google away from stuff about permanent impotence.

I know there are guys on here that have spent thousands upon thousands in treatments and travelled far and wide yet don’t tell friends. I suppose it’s easier to cover it up if you just have sexual sides. What has been your approach?

#2

Told parents straight away (Mum helpful, Dad useless - stopped seeing him for 9 months, before saw every day)
Then told 2 male friends (regret both)
Told girlfriend recently but never mentioned Propecia (went v well)
Told my boss i had health problems in the early days (was pretty obvious anyway), but no specifics

Wouldn’t have wanted to tell any more and regretted telling friends. This sort of thing just doesn’t wash well with other healthy males. Females are the best ones to tell if you’re going to do it.

#3

I believe that this is a huge issue with PFS. If i could confide in people and possibly look to get real help from doctors/ mental health professional then i would feel a million times happier. Instead we are left feeling like an outcast of society with no excuses for our failing, miserable lives. People with real diseases that are well known might have had there health ruined but at least they have there dignity intact and the people that are supposed to love and support them actually do.

I told both of my parents; neither of them believe me and told me to accept anti depressants to treat anxiety. I told my ex girlfriend who was very understanding and helped me through so much of this. I have no intentions to tell any friends or any boss that i may have.

PFS is like a sick joke, i don’t think you could make up anything worse. I would much rather have a recognized illness that would eventually kill me as at least then i wouldn’t have to live a lie. I could tell my friends why i reject women, why i don’t drink alcohol, why i am randomly shaking and feel anxious around them. I could tell my family why i screwed up my education, why i don’t have a job. And they would UNDERSTAND.

I suppose we can take some comfort in the fact that us PFS victims are not alone in this situation. Endocrinology is way behind the times and treatment for things like low testosterone, hypothyroidism, andropause are very poor. Just read some of the personal stories on ‘Stop the thyroid madness’. People lose there jobs, partners, families, everything - because of poor hormones and the scum doctors that don’t bother to listen.

stopthethyroidmadness.com/stories-of-others/

I wouldn’t even give a shit about the impotence and penis shrinkage if PFS was a recognized illness. I can make a joke out of everything in life, good or bad. I just wish i had something to fight for and live for with PFS. A cancer or MS sufferer for example can visit there doctor and be taken seriously. If much of there life has been ruined (career/ hobbies) then they can often get a job helping out fellow sufferers and even go on to become powerful spokespersons. Thus giving them a reason to live and be happy. We can’t do any of that, we are just a joke.

#4

you guys gotta realize… this will be recognized as a serious condition soon enough. my mom told me she saw a commercial on TV for propecia lasting side effects for a lawyer. back in the day, doctors used to endorse cigarettes, remember that one?

#5

I told everyone I know. Bosses, girlfriends, friends, aquintances, you name it. I had no shame about it at all. I have got mostly positive feedback from everyone. A few people don’t say much and pretty much don’t want to hear about it. Mostly, everyone has taken me seriously and is very supportive. My dad is a little bit standoffish about it. He doesn’t want to hear about it or provide support much.

Ex girlfriend pretty much rode out the whole journey with me through the crash and everything. There was no issue telling her. She was living it.

The hardest thing will be telling the next girlfriend I have. If I’m able to even get into a relationship.

#6

well i think finasteride is “a bit” more dangerous than cigarettes, in addition maybe doctors used to endorse cigarettes but never prescribed them.

#7

You continue to add nothing.

Told my mum, dad, two sisters and gf. Thats all i will be telling on a personal level.

#8

well i know there’s been cases about other prescriptions that have been taken off the market for their side effects. either way, a lot more people are starting to talk about this.