Passed the dreaded 3 month mark, trying to muster some hope

Member Stories
#1

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)?
Canada

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?)

What is your current age, height, weight?
34 y/o, 5’9", 160lbs

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.)?
1mg daily

What condition was being treated with the drug?
Hair loss

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

How old were you, and WHEN (date) did you start the drug?
34 y/o, Aug 2020

How old were you when you quit, and WHEN (date) did you quit?
34 y/o, Sept 2020

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

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

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

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
[ ] Complete Impotence
[ x] Loss of Morning Erections
[ x] Loss of Spontaneous Erections
[ x] 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
[ x] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ x] Lack of Motivation / Feeling Passive / Complacency
[ x] Extreme Anxiety / Panic Attacks
[ x] Severe Depression / Melancholy
[ ] Suicidal Thoughts

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

Misc
[ x] Prostate pain
[ x] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ x] Vision - Acuity Decrease / Blurriness
[ x] 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?
Cialis 5mg, Vitamin D 1,000iu

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.

Firstly, I want to express my deep appreciation for this forum. The members here are an extremely strong and dedicated community. I imagine my story is familiar to many. A couple of years ago I became obsessively distressed with my hair loss. Minoxidil wasn’t working after a year of taking it. After much deliberation I decided to hop on finasteride. While I was somewhat aware of the risks, I foolishly thought I was invincible. I convinced myself that I would be in the 90%+ group of users with no side effects. I thought even if I did experience side effects, I would discontinue the drug and they would go away.

I could not fully comprehend the level of sexual dysfunction this drug causes. It’s not just reduced libido, it’s absolutely ZERO libido – a complete disconnection between mind-dick. It’s not just erectile dysfunction, it’s an inability to achieve a fully hard, pre-fin erection even with use of Cialis. At best I’m getting 75%, but that’s only if I’m really “trying”. Anything sexual has become an anxiety inducing chore rather than a daily delight.

And then there are the other sexual side effects I was not warned about. Shrunken testicles and scrotum. Tissue changes to penis, which has become all veins and no girth. Pain in my prostate and, this is something I haven’t seen with anyone else, pain along one of the veins underneath my penis – it’s painful to the touch, and has been that way since week 2 of this nightmare. Has anybody else experienced this?

Finally, I have a bunch of the non-sexual PFS side effects, which came as a complete surprise to me – a lack of energy/motivation (especially when I wake up in the morning), anhedonia, tinnitus, blurred vision, brain fog.

Needless to say I’ve been extremely depressed since developing PFS. I made the biggest gamble of my life and lost. I knew what I had to gain in slowing down balding, but I really didn’t appreciate what I’d be giving up. And by the time I found out, it seems it’s too late to do anything about it. It’s a soul crushing situation to which I’m sure so many of you relate. It’s been over 4 months and I still struggle with the idea that this could very well be permanent.

Anyway, I’ve been lurking for a while and thought it was time to tell my story and seek support and solidarity from the forum. Thank god this place exists. You are all very brave souls fighting a war that you did not sign up for. I truly hope we all can improve and get our lives back

7 Likes
#2

Hey there,

Welcome to the forum.
I also took finasteride for 1 month and coaccidentally also from Aug - Sep but a year earlier in 2019.
I also noticed the symptoms about 3 weeks after initial usage so I guess our onset is very similar.

I just wanted to let you know that the 3 months thing isn’t necessarily a set in stone kind of timeframe, and it might very well be possible that your symptoms will decrease in severity over time.
So I encourage you to try to stay hopeful about this.

Please avoid minoxidil in the future as it ultimately has the same mechanism as finasteride.

At the same time, it’s true that some of the symptoms could remain indefinitely, as they do for a lot of us. But I’m not speaking only for myself if I say that the chances are likely that you may find ways to improve your baseline with lifestyle and diet changes. In the past I’ve had experiences with premature ejaculation issues and insomnia, but these went away completely over time. My symptom severity tends to fluctuate slightly over time, so I’m hoping this is true for you as well.

  • Make the best of life in every aspect that isn’t sexual, so you can have a good quality of life despite your current health issues.
  • Eat healthy and comfortably (Even if the two aren’t always overlapping)
  • Make yourself as comfortable as you can and be good to yourself
  • Try to physically exercise if your condition allows it
  • Find people you can talk to, be it someone you trust or a therapist
  • Make sure you have some hobbies that are able to get your mind off things.

I know it’s awful what you’re going through but let’s try to not let this drug take any more from us than it already has. If by chance we are lucky and find a way out of this mess, we will come out stronger and more grateful as people.

Meanwhile, try to not obsessively get lost in this forum. It’s nice to have the feeling to not be alone but there is also a lot of panic and nonsense sometimes.

3 Likes
#3

Thanks for the words of encouragement @Wintermoon.

Definitely a good call on the minoxidil, I quit it once the fin sides started.

#4

Really sad to read you also fallen by Merck. Your story reminds me a lot to my (even our age match), I can tell you I had VERY mentally challenging 8 months post crash, suicidal thoughts, throat squeezing anxiety and severe depression was just 24/7.
After I began to stabilize mentally now I feel mentally 90% healthy, meaning I just have occasional depression or anxiety. How i’ve achieved this:
Think about current condition as the whole life normal - no words needed how much difficult that its. Dont stress your body and mind thinking about every single piece on you how much better it was before those poison pills. After reaching a mental stability,

  • eating healthy, (mainly green vegetables with high quality meat like fish or beef, avoid milk products, sugar other inlfammatory foods and also avoid anti-androgenic foods like pumpkin seeds)
  • regular excersize (weight lifting or HIIT)
  • intermittent fasting (skip breakfast, dont eat nor snack between like 6pm and 1pm the next day for example)
  • take a look at metabolic blood labs and see if you are defiicient in any vitamins or else and supplement what you have lack of
    you give your system a good foundation to naturally improve in the long term.

Thums up and take care

1 Like
#5

Hey man. I am so sorry to hear you are going through this. I completely understand and relate to exactly what you are going through. I was there, in the pits of hell, 2 years ago. Suicidal depressed, symptoms were debilitating and severe, literally every facet of my life was impacted. I want you to listen to me now, this is temporary, the body can and will heal, you will get better, you will get through this. You need to stay strong. I am speaking from experience, how you feel now is the worst of it, recovery is slow & takes time, but if you follow what I’m about to tell you, your body will begin to heal and you will be on the path to recovery.

I would suggest you copy this comment and leave this forum and any other recovery forum. Do your best to avoid researching this stuff as it will only fuel your anxiety and depression. Here’s the path I would suggest you take to recover.

Based on my experience and research, going on HCG for an extended period, 3 months minimum, can be highly beneficial to restart the HPTA, StAR and neurosteroid cascade. Something I would suggest you look into and consider. Everyone is different though so proceed with caution and at your own risk. Obviously do your own research first and make an informed educated decision.

Mindset: I strongly believe my body has the ability to heal itself. The body has evolved over millions of years, surviving generation after generation through the most dire circumstances. The body has such incredible intelligence. It’s working every day to achieve optimum health. There is no doctor that is as intelligent as my body. It’s job is to maintain health. My body is fantastic, it is amazing, I am occupying my body, it wants to heal, it wants to be healthy, and I have to help it.

Sleep: Focus on good high quality sleep every single night without fail. Sleep is the #1 priority in my recovery protocol. The body heals itself when we sleep. Two hours before bed eliminate artificial light and stimualtion from computers, TV, phones, etc… Spend time focusing on meditation and relaxation. Aim to sleep at 9.00-9.30PM - the time you fall asleep is more important than how long you sleep. Listen to Shawn Stevensons podcast with Richroll for more information. Sleep is the MOST important thing for recovery. You could do everything else I’ve listed here, but without good high quality sleep every night, you will not recover. I also have a sunrise mimicking alarm clock and get 15-30minutes of sunlight first thing in the morning to strengthen the circadian rhythm.

Diet: Strictly avoid all inflammatory foods. No gluten, dairy, refined processed foods, take-away, refined oils, vegetable oils, refined sugar, etc. Limit intake of pro-inflammatory omega 6 fatty acids, increase intake of omega 3s. Eat a wide variety of plants and fiber to optimize gut health and build a strong gut microbiome. Lots of whole plant food - fruits, vegetables, potato, beans, whole grains etc. Consume wild caught fish and grass fed beef. Eating at maintenance or in a calorie surplus. No cheat meals.

Stress + Stimulation: Eliminate all stress and focus on staying calm & relaxed. Meditate and practice deep breathing daily. Spend time out in nature. Significantly reduce stimulation in the form of phone, computer & TV. Avoid violent movies & computer games. Focus on being in that calm, relaxed, parasympathetic state as much as possible. This is the state our body heals in. Practice mindfulness. Meditate daily.

Psychology: Positive and optimisic outlook. The mind is more powerful than any drug out there. You need to understand that you will recover, you need to believe that you will recover, you need to put your mind to it and truly believe that you will recover. Always chose to be optimistic and positive about everything. Realise that this is temporary. This is an opportunity for growth & development. You will be so much stronger after this experience. Always chose to be positive.

Gratefulness & Gratitude: Reminding myself every day what I am grateful for in my life. I truly believe I am lucky even though I have PFS. My life could have been so much worse. I could have been born in Syria and beheaded by ISIS. Or born in Africa and starved to death at 3 years old. Or slaughtered by machine gun fire on the front wave of the D Day landings. I could be paraplegic and be bedridden for the rest of my life. I will always chose to be grateful and positive for everything in my life, it could have been so much worse. I will not compare myself to my friends or other people I see on social media, instead I will be grateful for what I do have. This is an opportunity for transformation, I think of all the positives that will come from my situation, I will be able to appreciate the smaller things in life so much more once recovered, I always chose to be positive with everything in life.

Exercise: It’s very important that you don’t push yourself to exercise. If you feel worse after exercising, do not fucking do it, there’s a reason you feel worse and your body is trying to tell you that. Always listen to your body. Exercise can create a lot of inflammation and stress when your body is in a weak burdened state. I do believe walking daily can be very beneficial. Especially walks and hikes out in nature, being mindful and off the phone & technology. If you want to do exercise just walk. Walk barefoot on grass. Walk in nature. And always listen to your body.

Motivation & Information: I highly recommend the Youtube channel Health Recovery. James who runs the channel, spent I believe 8 years of his life suffering with severe chronic illness and recovered his health naturally through trial and error. I made the most ground with my recovery when I started listening to and following his advice. I personally have downloaded every single one of his videos (using J Downloader) and listen when I’m bored on my iPod. He gives fantastic information for our situation and is a really great source of motivation.

YouTube

900×900

Health Recovery

Accept that you are ill. Do not accept that you can’t recover. Skype consultations closed for now. Disclaimer: The ideas, concepts and opinions expressed in this website and associated products are intended to be used for educational and…

Supplements: DO NOT LOOK FOR HEALTH IN SUPPLEMENTS. We are desperate, look for quick fixes and want to take a pill to recover. It doesn’t work like that. I believe supplements can aid the process, however, its the fundamental changes to your life and what your lifestyle is like a on a daily basis that is the most important aspect in recovery. Keep it simple, save your money and spend it on good food instead. Don’t go crazy OCD on this trying to find the perfect protocol, keep it simple. I would only advise you take some basic supplements to help reduce inflammation and oxidative stress, and to help with sleep. Things like vitamin D, zinc, omega 3s, vitamin C, magnesium, chamomile tea, etc. Be careful though as some people can be very sensitive.

Bonus Items:

  • Meditation + Mindfulness.
  • Time spent outside, in nature, sunshine, walking barefoot on grass,
  • Laughter every single day. Watch and listen to comedies. Keep a smile as much as you can.
  • Playing with pets and animals,
  • Probiotics. I prefer homemade fermented probiotics, I use water Kefir
  • Affirmations + Mantras,
  • Visualisation,
  • Deep breathing, Yin Yoga, Relaxation exercises, grounding,
  • Gratitude + Gratefulness,
  • Reduce chemical burden. Eliminate Endocrine Disrupting Chemicals. I use only natural toiletry products. Wash all food to remove pesticides.
  • Remove toxic people, environments and circumstances from life.
  • Hydrate often.

Avoid:

  • Any stimulants, strictly no caffeine,
  • Pharmaceutical drugs,
  • The wired, stressed, overstimulated state, AT ALL COSTS.
  • Pushing yourself, doing too much too soon.
  • Any person or activity that leaves you feeling drained, stressed or exhausted,
  • News, politics, social media, forums, etc. These are downers in my opinion and not productive to recovery.
  • Overloading your brain with information and stimulation.
  • Negative self-talk, rumination, worry. Live in the PRESENT.
  • Comparing yourself to others.
  • Minimize masturbation.
  • Strictly no porn.

Doing all this got my testosterone to 1093 ng/dl.

October 2018:

8965f9cbe430408382c05f205ebcb8c40bd0a694

Jan 2021:
823144ae92a7ca6a7ed50618a16e5719859a07d8_2_690x212

And lastly, the most important thing is consistency. Don’t expect to make any progress if you make positive changes and then fall back into old habits a few weeks later. The body loves consistency.

That’s it my friend. These are the lessons I have learnt after being severely ill with PFS for the past 2 years. I wish I had this information when I first crashed, so the least I can do is share it with you.

Stay strong, keep your head up, keep a positive state of mind, and be patient. Recovery is not linear, two steps forward, one step back. The body can heal itself, it just takes time, consistancy and patience. You will get there. And if you ever need someone to talk to, we are here and we want to help. We’re in this together.

My favourite video by health recovery.

Godspeed.

7 Likes
#6

I like these dos and donts very much - thank you ! Very useful to list the beneficial things

#7

Sorry to hear you story , keep doing the things you know are good and will make you feel better and don’t stop believing in your bodies recovery . We are the same age and it’s difficult to go through something like this …it really is . But you never give up , you just don’t .

Best of luck and keep us updated on your progress !

1 Like
#8

I second every single word of Alex. Every. Single. Word.
Don’t stress and obsess with this from now on, please brother. It won’t do anything but harm you even more. Take care, you will recover. Good luck and be fine on your journey.

And don’t forget to post your recovery story when you see yourself fully healed futurely :). Peace out!!

1 Like
#9

Gentleman, I can’t thank you enough for your uplifting messages. This is exactly what I needed this morning.

While I meant what I said about appreciating the forum, it is both a blessing and a curse. Just yesterday I saw a new post with multiple responses saying recovery is impossible. Glad to see there are members here with optimism to combat the negativity!

#10

It’s a common trend saying that this forum is both “a blessing and a curse” simultaneously even at the recovery post from healed ones (I recommend you reading “Charles’ Healing Story”, btw -and copy and paste his post too).

I think the main idea of a forum like this is to give support and be kind. All the potentially dangerous advices and theories are just: theory. I understand negative people here because they’re all in pure despair because this is indeed a horrible experience, and negativity is a powerful feeling that removes a lot of energy, hope and good things from us. But don’t get bogged into this my brother.

All the syndromes are far far away from being psychological, but on the recovery aspect, it’s a cornerstone no doubts. We are bodies, systems, beings. But we’re spiritual too. Life and all the things (be whatever it can be) behind this surely is bigger than we could imagine. When using forums, stick with good words that will harm your soul and keep you motivated, friend. Keep going, persist, be confident on it. You can have doubts, fear and sadness, just don’t drown on it, flip 180 degrees and trust everything is gonna be alright!

3 Likes
#11

Saw a post today about members not sticking around, and while I’m nowhere near recovered, I figured it’s time to post an update. I’m now 8 months off fin.

What’s improved:

  • tinnitus is now minimal
  • more responsive to cialis (I take 2.5 - 5 mg daily)
  • easier to obtain and maintain erections
  • more voluminous, forceful, enjoyable orgasms
  • pain in penis shaft is finally gone (at around the 6-7 month mark)
  • less depressed
  • better sleep
  • more energy and motivation

What’s not improved:

  • while erections are better, rigidity is only around 80%. It still requires constant stimulation and I can lose them fairly easily (though daily cialis has helped)
  • libido quite low. I’d put it at 10-20%
  • large veins in penis remain
  • penis misshapen
  • testicles continue to feel smaller and weightless, scrotum retracted

All in all it’s hard to shake the depression with my situation. My remaining symptoms are all sexual in nature, and I know many people have it much worse (my heart goes out to you, truly), but it’s still quite devastating for me. Nonetheless, while I may never be the same again, the minor improvements I’ve made in recent months give a glimmer of hope for some kind of normal life.

On that note, I’ve started talking to girls again on the apps. The prospect of getting in sexual situations and not being able to perform is terrifying. But I feel one must take risks in life, so we’ll see how that goes

Going forward, I want to focus on eating better and exercising, two common recommendations that I’ve been pretty bad with. I’m also cutting down on booze and pot, which has been hard because it’s historically been a consistent part of my life. But I really think taking better care of oneself is the best way to deal with this, even if it doesn’t cure you

One more thing I want to mention is that this forum works best as a place of support. The fighting I see on here is unnecessary, unproductive, and hurts more than it helps. I truly wish you all the best in recovery, and that’s the only vibe I care to share

-MasterSword

3 Likes
#12

I appreciate that statement, thanks for sharing.

I hope you’re doing well.

1 Like
#13

From the day of the Crash, some get worser and worser and worst (WE know this Reports all and they making us fear ), but most of all describe any kind of recovery. Some Libido, fuller Penis come back, but erections only to 75 to 90%. Mental issues become lower dramatical. But never to 100%. So we all have to find a compromis with our new Situation. Or we surrender…