Disappointment with doctors

General Discussion
#6

Know the feeling, I’ve had doctors walk out on me when I was explaining my situation and I felt helpless at the time cause I didn’t know where to turn.

I wouldn’t say it’s 1 pill of fin just tell them you took it for several months to make to fit there narrative or if your head feels like it’s swelling just tell them the symptoms and avoid the fin stuff altogether. Most won’t agree with you anyway, fin obviously triggered something else that makes it hard for anyone to diagnose all the issues related with this mess.

3 Likes
#7

I had a six-month check-up with my primary doctor yesterday. I told him that I had been on finasteride prescribed by my urologist, and had stopped it due to side effects. I asked if he knew of any side effects due to that drug, and all he could mention was reduced semen quality.

At that point I asked if he was aware of PFS. He knew nothing about it so I pulled out a paper on which I had written “post finasteride syndrome” and the Propeciahelp.com website. He literally refused to take the paper from me, and said that he could look it up. The way he said it I don’t believe he ever will. I gave him a rundown of some of the actual side effects people have including of course, ED, and his eyes kind of glossed over.

I did not expect him to be an expert on it, but I also did not expect him to be so totally disinterested.

7 Likes
#8

Doctors spend years of their lives training to develop “expertise” as doctors. They believe in their training as an ideology which is supposed to present them with all the answers. When presented with data or information they don’t understand, the insecure ones will blame the patient. Given that the medical profession selects for people who can memorize massive amounts of information they don’t tend to be so confident in their abilities to think outside the box. HINT - WE RESIDE OUTSIDE THE CURRENT BOX.

The few who have actual medical wisdom and are secure in their medical judgment may try to figure out what is wrong with us and fail because nobody has any answers right now that are universally applicable to all PFS patients. The good doctors will be able to tell you I don’t know.

It’s taken me a long time to get to this point, but these doctors aren’t viciously trying to oppress us. Some of them did get corrupted by the system. But its incumbent on us to figure out how to change the system so that it will acknowledge us as well. Don’t blame your doctors. Blame the system and figure out how to achieve systemic change.

9 Likes
#9

The brain burning is horrific I know the feeling well

2 Likes
#10

Happens to me all the time, lasts hours and even days some times for me.

1 Like
#11

I should state that a few days back I got my Medical history and surprisingly the Urologist who I seen a few months back had written all my symptoms down and then below it had written Post Finasteride Syndrome. He was recommended I think by this site and was fully aware of PFS.

6 Likes
#12

Did you tell the urologist about this forum and that others are fighting the same condition? Seems like he is a good doctor if he acknowledges the condition.

1 Like
#13

Yes, I told him he was already aware of the syndrome so it would make no real difference.

#14

Patient load is one problem too and I think I can empathize with the problem of the internet with all its misgivings of misinfo and quackery that sours the patient-doctor relationship. We are medical unicorns maybe in a sea of hypochondriacs and patients seeking overtreatment. That isn’t to excuse the bullheadedness of many doctors who dismiss us outright, refusing to change their minds when presented with new evidence.

But what can a sympathetic doctor do much to help us?

2 Likes
#15

Spot on.

#16

Hello guys, my mind reminded me a past event. This anger waves are killing me inside. People are so rude! Even doctors! They have this stupid God Complex! 2 months ago, i went to urology in a special hospital. I paid a lot for an simple examination and the doctor didn’t even listened to me. I went there twice, to show my blood and semen results, he calmly listened my problems and theories about PFS first, but the second time this happened; Im writing an abstract version of our dialogue.

Me: So, here are the blood and sperm results sir…

Dr. Ok, all looks within the rage, you are fine.

Me: Well… i expected this, i know they are within the range, but i have a hourglass penis before urination and my balls got smaller, i have also very very low semen volume since i took Accutane…

Dr: You are fine, tests and physical examination shows nothing… (he says this very rude and strict.) I didn’t saw a hourglass shape. Also you didn’t measured your testicles before, you can not prove this and i can not do anything about this.

Me: Its because the hourglass shape happens before urination, sir, i know you need to follow a protocol to treat your patients, but as i said, i have these issues, just because my results look “within the range” it doesn’t means that im not sick. Don’t you think? Can you at least give me a doppler scan test? (I talk very kind and almost miserable while saying these things)

Dr: No i can’t give you a doppler scan, we don’t give to people like you, i have nothing to do for you. (Here comes the breaking point) please leave my office.

Me: But… ok… please listen me, i researched this syndrome, its called PFS and it is on medical literature… there is a theory called androgen overexpres… -

Dr: I DON’T HAVE TIME FOR THEORIES. Please leave the room allright?

Then i went out and filled a complaint form which has no meaning… my hands were shaking because of anger. And i leaved the hospital. I can’t believe this is really happened. A special doctor expelled me from his office out of nothing! I wish i said many things to him that i couldn’t say at that moment. He was so rude and disrespectful.

I posting this because i wonder about the other doctors from other countries. Did they treat you this rude too? Did they listen you, or just cut it out like " i dont have time for theories, you look fine".

I hate doctors like this, i hate this kind of disrespectful people. He literally expelled a patient from his room, he didn’t even listen me. At least he should listened my theory and gived me some advice and information about hormones… what kind of a person is this. Just for the record: His name is Op. Dr. Serkan Akdemir (Medicalpark İzmir Turkey)

6 Likes
#17

I am really sorry!

What’s his name and hospital affiliation? These people need to be publicly exposed and shamed.

3 Likes
#18

Not uncommon, I’ve had what was supposedly the top endochrinologist in the country tell me my numbers were fine and there was nothing he could do for me and just walked out while I was talking to him.

3 Likes
#19

As rude as that is, there probably is nothing he can do for you.

2 Likes
#20

Hi @Cooper , I merged your thread with this one as they are essentially about the same subject matter. There are quite a few examples in here of members being dismissed or condescended to by their doctors, it is a common experience for many PFS patients. In future consultations with clinicians, it may be advisable to not even mention Accutane if you are seeking a specific test for isolated symptoms (such as a doppler test).

#21

I went to a Uro and told him my situation. He was extremely rude as well. He says: “Its not often we see guys your age come in with this problem (ED).”

He then said: “If this is from propecia, theres nothing we can do for you.”

He then gave me a script for testosterone bloodwork which came out in a low normal range. The secretary called to tell me my results and when I asked if he needs to see me again, she says “No, he says you dont need to come in or do anything.”

This is so unacceptable. Ignorance is not an excuse for dismissing a patient. Its not true that there is nothing they can do for us. They can prescribe viagra/cialis/hormones. They can also send us for a doppler so we know if there have been physical changes. Even having that knowledge is very helpful in moving forward to get better. I have seriously lost count of all the doctors who have done more harm to me with their god complex. Not ONE uro ever mentioned that nocturnal erection are important for tissue health. Even the ones who asked if I was getting morning wood never mentioned the dangers of erectile inactivity. Granted, I may have already had fibrosis at that point but none of them even gave me shot at beating this. Goldstein is the only doctor who gave me the time of day but I cant tell if Im too late at this point. I did everything I could do to give myself the opportunity to get better and Im only in this situation because of idiot doctors and corrupt drug companies.

2 Likes
#22

That’s fucking horrible that is mate. I’m livid for you. I guess last year when I had every physical test under the sun and was still throwing up intensely ending up in an ambulance every week by your docs logic I would’ve been fine since you know my bloods were in range -.-

A lot of docs are up their own ass man, they’d hate to have a patient from the general public walk in and sit them down about something they don’t know about, something they might contribute to the increase of by prescribing fin and ultimately something they’ll be powerless towards being able to fix it so some of them do the easiest thing which is just dismiss it as not real or not serious the weak spirited pathetic dorks. Imagine refusing to take sick people seriously when you are a doctor, now that makes ME sick.

I hope you find a good doc soon bud no one should have to deal with this shit. It causes fucking deaths, I hope we’re taken serious soon as it’s alluded to in PFS foundation research we are being stigmatized and it will inevitably lead to suicides in my opinion.

2 Likes
#23

Shit, this speaks to me man

1 Like
#24

Just seen a doc. He took a look at my dick for 5 secs and said I don’t need a uro for a doppler and said my dick is fine. Theres definitely something wrong, it feels weird and I was getting pain occasionally. Some tissue already deteriorated. How tf can you look at my dick 2 secs and be like yup no fibrosis etc…

He threw me a script for a cream because he said there’s some redness and then said come back if I don’t get better

No offer of PDE5s and zero acknowledgment that I told him my emotions were gone. He just said come back if I don’t get better because there hasn’t been enough time since coming off finasteride. I said what if I don’t get better and he said the possibilites are endless. Well they’re not are they doc, you can give me viagra and shit and check my in range hormones (self prescribed trt which has always been fine before fin) or attempt to restart my system using nolva/clomid but I bet the differene would be minimal to low dose trt and natty.

I just want a alright libido and a dick that doesn’t feel fuckin 80% on a good day. He asked me what my girlfriend thinks lol my guy thinks I’m getting laid with this sex drive… How can I chase girls if I have no desire to be with them?

I guess my life will become a science experiment of protocols and attempts to get better. I wonder if proviron could help because it seems DHT just isn’t doing shit in my body no more (thick hair, numb dick, white pubes, hair on body going lighter all seems to be lack of DHT)

Probably gonna shell out some money on private specialists because they’ll have to take me seriously but honestly what the fuck can they do. My life is probably ruined. I just hope I can find a doc who will work with me and help get me to a stable level where I can enjoy my life again.

Does anyone have any experience with UK private doctors for this?

1 Like
#25

What cream did he give you? If it ends with “azole” I think you should probably not use it from what I understand. Dont get too discouraged yet. Ive had all the symptoms including confirmed fibrosis (mild) and still have periods where Im 100% and im 16 years off propecia.

What is the incentive for doctors to NOT order dopplers? I dont get it. Every uro I saw except Goldstein refused. One even tried to scare me about getting the needles in my dick.

What is the longest youve gone without masturbating during this? Try to go 2 weeks or longer and make sure to not jerk off when you feel pretty good. I think it may reassure you that youre capable of being 100%. The fact is that we are not the only guys who experience this. So many of our symptoms are similar to sexual exhaustion or porn addiction guys. If its true that sexual exhaustion can cause some of our symptoms, then there are almost certainly at least some false positives for PFS in here from guys who happened to take finasteride but are actually suffering from exhaustion or chemical changes in the brain due to porn addiction. I know I may sound like Im beating a dead horse but I always see improvements when I avoid PMO for at least a few days (usually more). My urges get so intense, that its torture to not relieve myself. I always fail but I keep hearing how important it is to get through those moments to fully heal. A lot of these guys have wet dreams during their abstinence after a while. Its def not a well received theory here but it sure as hell cant hurt and is worth a shot. I dont think its beyond the realm of possibility that fin just acted as a catalyst for our problems by throwing our endocrine system out of whack. Dont get discouraged!

2 Likes