Story of a dutch member who has PFS for over 3 years

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)?
Netherlands

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)
Google search

What is your current age, height, weight?
23/1.80cm/63kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Finasteride

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1 mg/day

What condition was being treated with the drug?
Male pattern baldness

For how long did you take the drug (weeks/months/years)?
If I remember correctly 3-4 months

How old were you, and WHEN (date) did you start the drug?

Around 19 at the time and I think around 04-04-2018

How old were you when you quit, and WHEN (date) did you quit?
Still 19 and I think around 07-04-2018

How did you quit (cold turkey or taper off)?
Cold turkey after developing severe side effects

How long into your usage did you notice the onset of side effects?

1-2 months

What side effects did you experience that have yet to resolve since discontinuation?

Emotional blunting/low libido/sexual side effects

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[ x] Loss of Libido / Sex Drive
Erectile Dysfunction
Complete Impotence
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
[ x] Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
[x ] Emotional Blunting / Emotionally Flat
Difficulty Focusing / Concentrating
Confusion
[x ] Memory Loss / Forgetfulness
Stumbling over Words / Losing Train of Thought
Slurring of Speech
[ x] Lack of Motivation / Feeling Passive / Complacency
Extreme Anxiety / Panic Attacks
Severe Depression / Melancholy
Suicidal Thoughts

Physical
Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
Muscle Wastage
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes

Misc
Prostate pain
Persistent Fatigue / Exhaustion
Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss
Frequent urination
Lowered body temperature

Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

Taken some zinc supplements

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?

Not available

Anything not listed in the above questions you’d like to share about your experience?

No

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

I took the drugs for 3-4 months to treat male pattern baldness. After a while I developed some severe side effects like emotional blunting. At the time I didn’t had any sexual side effects. I noticed that after I stopped taking the drug I felt way better mentally then before. One day I forgot to take my dose and took 1 dose the next day and another dose at the usual time and the day after that I’ve crashed and developed what is called PFS. That’s when I also had sexual side effects, I remember having a low libido but after taking citalopram that completely vanished and now I have no libido at all. With the emotional blunting I’ve also noticed that I couldn’t fall in love, or enjoy simple things in life like a nice mountain view. It’s something that you take for granted until you don’t have it anymore. I have pfs for 3 years right now and hope that we ever find a cure. I’ve accepted my condition as that is the best way to deal with my situation unfortunately. I’m also trying to avoid negative thoughts and just try to stay positive, try to live my best life. Sometimes you just can’t help but think about life before having PFS. Since I’m a muslim and believe in a god I still have hope that we will find a cure and live a happy life after all just like we used to do. I live in the Netherlands and had been a long lurker on this forum before I decided to post this topic. I’ve also seen a lot of negative thoughts on this forum, and self experimentation. I will try my best to contribute to productive ways of beating this condition by raising awareness or raising funds. I have tried a couple of attempts already, and there was an admin of a huge reddit community who was willing to raise funds for us. His only condition was that he wanted to speak with someone trustworthy. After that he was willing to promote fundraising for research. I think I have to make another topic about this, to see if something useful can still be achieved as this happened like 3-4 months ago. This was my story and I thank you for taking the time to read my story.

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This is much worse than any sexual side effects in my opinion.

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I’ve learned to live with it and try to forgot about it and try to live my best life. That’s the best way to cope with this condition.

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I’m sorry this happened to you but I am glad to have you here with this type of attitude

Hi @Hopeforlife0161

Welcome to the forum and as the other members have said, I’m very sorry this has happened to you, but credit to you for telling your story and wanting to help. I’ve been living with PFS myself for over 7 years and while I’ve made improvements, I yearn for my former life so I am extremely active with other admins of this site in a group known as PFS Network.

I’ve recently left my full-time job to work with PFS Network as there are some exciting projects underway, and others planned, such as research we’re hopeful to announce sometime in the future. You can check out our YouTube channel where we’ll soon launch 9 new episodes of a video podcast I’ve filmed with patients, families and clinicians speaking out. Fundraising is going to be extremely important in a few months, so I will reach out to you privately to see if we can set up a call about what you’ve mentioned in your post.

Regarding other ways you could help, completing our patient survey will be very helpful for our research efforts. Please also make a report to your local regulator about your symptoms.

I’ll reach out to you via PM, but again, welcome.

Best,
Mitch

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