Tell it to me straight

[Jamie1]

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)?
UK

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?)
Googled my symptoms.
What is your current age, height, weight?
21, 5’11”, 75.4kg
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 for 6 weeks
What condition was being treated with the drug?
male pattern baldness.

For how long did you take the drug (weeks/months/years)?

6 weeks
Date when you started the drug?
15/01/22
Date when you quit the drug?
23/02/22
Age when you quit?
21

How did you quit (cold turkey or taper off)?
Cold turkey

How long into your usage did you notice the onset of side effects?
Initially i had some pain in my testicles followed a few weeks later by watery semen and sensitive breasts.
What side effects did you experience that have yet to resolve since discontinuation?
I have had no resolution of symptoms.

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

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

Physical
[x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[x] 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?
Nothing, just multivitamins but I was taking them before.
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)?

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

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

I noticed I was balding and a friend of mine told me to get on it. He was on it and had had some success and no side effects. I took it for just over a month saw some things I didn’t like and decided to go cold turkey.
Following this symptoms improved, my semen became less watery, my mood improved and I felt fine.

I thought I was in the clear as yesterday was literally day 20 and I thought I was beyond the crash. Then I couldn’t sleep, and I couldn’t get hard, and now I am terrified of the future.
I know I need to wait three months, but I honestly think that I have pfs as I have no ability to become erect. What can I do to cope with this.

Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY TRIALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY

1. Name of the therapy/substance:
   • Dosage:
   • How often you took it:
2. Status
   • Still using [ ]
   • Stopped with no lasting change to initial symptoms [ ]
   • Stopped with persistent change to symptoms [ ]
3. Duration of use: Days [ ] Months [ ] Years [ ]
4. Response when you started:
   • Greatly improved [ ]
   • Slightly improved [ ]
   • Stayed the same [ ]
   • Slightly worsened [ ]
   • Greatly worsened [ ]
5. Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
   • Greatly improved [ ]
   • Slightly improved [ ]
   • Stayed the same [ ]
   • Slightly worsened [ ]
   • Greatly worsened [ ]
6. Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
   • Greatly improved [ ]
   • Slightly improved [ ]
   • Stayed the same [ ]
   • Slightly worsened [ ]
   • Greatly worsened [ ]

[Wintermoon]

Hey @Jamie1,

Welcome to the forum. So sorry to hear you have been going through this experience. We know all too well how scary and awful it is.

My suggestion would be to wait it out and try and distract yourself with other things as much as possible.

I think it’s wise to not assume that the symptoms are permanent unless they really show themselves to be. We see a lot of people come and go and a lot of people do still recover from side effects in the first couple of months or half year or maybe even a year. This is probably true for the majority of people who experience adverse effects. The three months timeframe isn’t a very hard guideline so to speak.

While this is not the reality for everyone, for now I would trust in your body’s ability to recover because you’re still quite early into this.

As of now, we are still in the middle of funding research efforts trying to figure out what exactly the problem is so we don’t really have a first-line treatment or anything that is suggestive that it might be beneficial for your situation.

So essentially, the advice is to just treat yourself well, take it easy and see how it goes.

In terms of coping, the best thing you could probably do is try not to focus on it too much or read too much horrific anecdotes and prioritize other things in your life that are important too, like maybe work, or school, or just distract yourself with fun activities. I know this is very hard to do given the seriousness of the symptoms, but going over and over in your head about this with worry is just going to make things worse.

We really appreciate that you have reached out to us and shared your member story with us. I wish you a speedy and full recovery and that your presence here will be a short one. If not, this community will be here for support and we would love to inform you about all the ways you can help out.

Edit: Feel free to ask any questions of course, none of what I said above is meant to push you away or anything. I just meant that it’s probably a good idea not to rush to conclusions at this point in time.

[Jamie1]

Thank you for what you have said.

I will try to live my life as best as I can with these symptoms.

At the moment the one I am most nervous about is insomnia, what is the best way to ensure a good night sleep that doesn’t involve any substances?

Also is it worth talking to my doctor about this? What will they do to help, if anything?

Thank you again.

[Wintermoon]

As for consulting your doctor… I would like to refer you to this page on the PFS Network website.
You would likely be raising awareness for them rather than the other way around and it is doubtful they will have anything to offer you that isn’t entirely experimental. In any case, I stand by my earlier statement that you would be better off waiting it out first, because your symptoms might still resolve in the coming weeks or months.

I personally have had only very brief experience with insomnia as a symptom so I wouldn’t know what kind of substance or medication worked best for it. We’re generally very wary of any treatment advice here on the forum and our experience is that different people have different results when trying supplements or medications.

I hope someone else will chime in and share their experiences on the subject.

I think it’s probably a good idea not to look at any digital screens at least an hour before bed and avoid sugar and caffeine or much food intake in the second half of the day. Physical exertion during the day might also be helpful. So those could be things to try at least.

[Ultra]

Hey Jamie1,

I hope you’ll feel better soon. That’s possible, so don’t focus on the bad thoughts.

As a person who used to suffer from terrible insomnia I have several recommendations for you not involving any substances.

• First of all, try your best to stick to the natural sleeping schedule. Avoid light after 11 pm, try to make your room as dark as possible, and take a warm bath before going to bed.
• Perhaps, you’ll need to clear your mind, so you can search for some meditation or breathing techniques(I’m not good at that).
• View bright light(ideally sunlight) within 1 hour after waking(ideally before 10 am) and spike your adrenaline with cold shower or/and some exercising.
• It’s better to have caffeine 2 hours after waking to let your body get used to awakening on its own. Also having breakfast at least one 1 hour after waking also helps to establish right rhythm.

The main point is to bring your circadian rhythm in order and maintain it. It is very beneficial for healthy body functioning and better mental condition. These are very simple recommendations, but they helped me a lot.