Spouse of PFS sufferer

Member Stories
#1

Hi. I’m the wife of a PFS sufferer in Phoenix, Arizona, USA.
Found this forum in a desperate spiral of clicks through Google.
My guy is a dedicated body builder, health conscious, 46 years old, Height is 6’2”, weight 210 lbs.
He took Finasteride, 1 mg/day, for about 2 years to treat AGA. Quit cold turkey in mid -February, 2020.
Because of several family tragedies, And a predisposition of mild bouts of depression, we may have missed early stages of symptoms. As his wife, I noticed more severe personality and physical changes by about 16-18 months of use.
The most notable side effects that have yet to resolve since discontinuation are zero spontaneous, nocturnal or AM erection, unsustainable erection only aft serious manipulation, major loss of sensation.
[ ] Lower Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
Mental
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
Physical
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes
Misc
[ ] Stomach Pains / Digestion Problems
[ ] Vision - Acuity Decrease / Blurriness
[ ] Hearing loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Lowered heart rate (bradycardia)
Crashed 2-3 weeks after stopping with sudden cardiac death (SCD) He was resuscitated, heart was stabilized, yet bradycardia persisted. Defibrillator/pace maker (ICD) was necessitated & implanted because no other cause for the heart function anomalies could be ascertained.
Also, because of the heart meds that are protocol following implantation of the ICD, they exacerbate the ED symptoms, so we can’t be sure of the cause until he can stop those, if ever.
He is still in shock, if you will, and in emotional shutdown, not even acknowledging PFS. SO, we haven’t even approached any doctors regarding treatment. Obviously, keeping his heart going is of prime importance.
SO, I’m researching and digging, and mostly feeling such OUTRAGE these drugs are being prescribed at all, much less to such young men. It’s crippling and killing.
So, the worst outcome of the skewed thinking, personality changes, and ED distress is that my husband decided to take aftermarket or black market ED drugs & visit a sex worker. The problem is, that it was in her hotel room that he dropped dead. (Good thing she knew CPR :face_with_raised_eyebrow:) If I didn’t have 18 years of knowing my husband as an attentive & nurturing husband and father, I may not have been able to be as strong and dedicated to him, afterward. However, he gave me many loving and fulfilling years before this medication broke him down, so we are going to pay homage to that and battle on together. These drugs really F up lives…
A few things from a spouse’s view:
1.) I know the emotions, or lack of, can really break down communication. Fight it!
2.) Feelings of isolation & depression, caused by the meds are overwhelming—fight it! Let your loved ones in, as much as possible. Lean into them. Let them hold you, love you, and help you. Don’t do this alone.
3.) This syndrome is hard enough without the shame and self flagellation. Be gentle and patient with yourself. Push the shame and embarrassment aside. Seek professional, accredited, qualified help. And if they don’t hear and believe and know, then keep seeking until you find it.
4.) Finally, don’t forget the heart part of post finasteride syndrome. Healthy and fit people think that having very low resting heart rates are a huge plus to all the working out, but Bradycardia is a cardiac irregularity that I believe is linked to my husband’s experience of sudden cardiac death. I’m glad he’s still here, but PFS has really put some land mines in our path forward.
Battle onward all of you brave souls. Thank you for being here, sharing, informing & fighting.image

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#2

Dear God, that is terrible. Please keep us updated on his condition. I hope and pray he pulls through. There may be some other stories somewhere in the archives of this site, but he is the first one I’ve read about that this happened to.

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#3

Hi there @MerckDheart,

Thanks for sharing your story and that of your husband. Firstly, it’s a credit to you that you have been such a support to your partner. Many patients are not so lucky with how resilient and dedicated their loved ones are willing to be, and it’s great to hear.

Heart rhythm abnormalities and bradycardia are sadly something a number of PFS patients, myself included, struggle with greatly. My fitness tracker likewise considers my resting heart rate that of a top athlete at the peak of physical fitness…That is definitely not the case in this situation, as you know.

Heart rhythm abnormalities and bradycardia specifically is accounted for in our post-drug syndrome survey. We designed this important research to record, in standardised data, the full scope of symptoms reported in PFS and thus inform future research into the condition. If your husband would be willing to fill it out, it would be terrific. I will flag your account as invited, so he can click through it on yours if he does not want to sign up himself on a separate account.

Thank you for continuing to bravely support your partner with this condition, and all the best

Axo

6 Likes
#4

Have we asked people’s heart rates before? Maybe I need to update my survey because my heart rate is under 60 bpm

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#5

Hi,
Its seems you are very supportive wife. But future may be hard if you 2 expecting live like your past. After his heart issue is sorted out better you study Buddhism or having therapy sessions and understand how suffering is common in the world and how to manage it from your mind. This coping part will help reduce your anxieties and have a clear vision on future.

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#6

Please take a look at the PFS medical literature linked to on this site. It is sparse but perhaps it will help you.

What a heartbreaking story. I respect you tremendously for fighting for him after everything that has happened and coming here. I can tell you from first hand experience that ED will drive a proud man absolutely mad. I want to believe he loves you very deeply and that his foolish actions are the result of his frustration and despair.

Keep up the good fight. Don’t give up hope.
Reportedly there are several cases where people have, somehow, recovered. Although we are a vulnerable community and you should be wary of what you read on the internet. For now, the most important thing is to adapt to the new situation as best as both of you can.

You are right to be angered by this situation and the fact that this highly unpredictable medicine is so casually available for cosmetic purposes. I predict there will be a notable surge in PFS cases the coming years as cosmetic companies are picking up and selling Finasteride packed with shampoos and other such products. We can only hope that more PFS cases will increase interest in research so that the condition is better understood at some point in the future and a proper diagnostic process and treatment can be realized.

I wish you and your husband the best of luck and a strong recovery.

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