Update: 8 Months with PFS

Hey everyone.

It’s been 8 months since my crash after 10 years of Propecia use. I don’t come to this forum very often anymore, but I also didn’t want to be one of the countless users that disappears and never touches base. I’ll try to keep it short and sweet though for anyone interested in my personal experiences so far. Everything in my post is MY OPINION and I make no claims to have cures, answers, etc.

I used Propecia for 10 years. In 2019 my health slowly declined throughout the year due to bad business moves, a back injury and…a divorce. It all came crashing down in December 2019. I lost the brain-penis connection, I was a zombie, I hurt constantly, the brain fog and headaches were unbearable, I went weeks without sleep, and I even had a nice partial facial palsy for a few days. Wasn’t able to workout, body went to shit, skin changed, hair changed, penis changed, and on and on. I missed a ton of work. I had every test under the sun done. I spent a TON of time and money looking for answers, and I traveled to top hospitals in the region (Vanderbilt, Emory, etc.).

I used to frequent this forum and pour through posts, old and new. Used to print articles on every topic I could find just to try and find hope/answers. A lot of dead ends. Listed below is a list of all of the different treatments or methods I’ve tried in the last 8 moths:

  • Acupuncture
  • Massage therapy
  • Hyperbaric oxygen therapy
  • Ketamine IV therapy
  • Vitamin IV therapy
  • Supplements & Herbs
  • Red light therapy
  • Hot baths (daily)
  • Yoga
  • Pelvic Floor Therapy
  • Meditation
  • Modified diet (cut out fast food and processed food)
  • Sleep aids (Rx and non-Rx)
  • Behavioral therapy with Psychologist
  • Depression support group
  • Motorcycle therapy (ok…so I bought a motorcycle and it turned into the best therapy of all)

In that 8 months I have been to primary care physicians, neurologists, rheumatologists, psychiatrists, psychologists, orthopedic specialists and naturopathic doctors.

All of that really just to say this: I’ve fought my ass off the last 8 months to try and not give up or give in to PFS. It’s cost me a ton of time and way more money than I care to admit (credit card debt is an issue now).

So the purpose of this post I guess was just to update where I’m at today vs. where I was in December. I can say two things with 100% certainty. 1. I 100% have “PFS” and I was not one of the fortunate ones that stopped Propecia and was well a few weeks later and 2. I am 100% better than I was 8 months ago. The issues I still deal with:

  • Brain fog - this is probably the biggest one for me. I just mentally don’t feel like my old self…ever. I’m not as ambitious or creative or driven. But it’s a lot better than it was!! I am “functional” most days and for that I am thankful.

  • Sexual side effects linger - my penis is definitely different than it once was for the first 33 years of my life. It is more ‘flaccid’ most of the time, less lively. I am still attracted to women and get turned on, but nothing like before. I can be in a sexual situation that before in my life I would have gotten hard…and I just don’t now. BUT when the time comes to have sex, I can perform. Sometimes I’m not rock hard and it doesn’t stay as hard throughout. But it works. I also get nocturnal erections during the night, but I never wake with morning wood anymore.

  • Hair loss - my hair has completely changed texture since stopping Propecia. What was once a lush head of hair is now thin and weak. My hairline has receded a lot as well. I opted to try exosome treatment for hair growth, but so far nothing has changed. I will say this for certain though: I will NEVER touch Propecia or propecia-related products again even if it means going bald. Not worth it.

  • Skin and body - my skin definitely ‘aged’ the last 8 months. It’s just kind of loose. Kind of classic of losing collagen. It bothered me a lot at first, but now I forget it’s like that unless I’m focused on it. And my body changed too. I don’t get that solid pump on anymore when I workout. I keep a little fat around my belly I never had before (but then again COVID certainly doesn’t help). But I’m thankful to workout 7 days a week so…not complaining.

Some good did come from PFS if I’m trying to find silver linings! The desensitized feeling has worked to kind of be a blessing/game-changer for me professionally. I used to have really bad social anxiety…like really bad. Now…screw it. I walk into any room, any situation and I just wing it because I always feel kinda numb and don’t care. I also used to deal with a lot of emotional stress from managing staff. Not anymore. I’m numb and don’t care so much so I kind of just tell it like it is. Some people hate it, but most like that kind of leadership compared to the old me.

[The ‘controversial’ part] Everyone always wants to know what you’re doing now as far as treatment, so I’ll share my approach. I know a lot of you will disagree with me, and as per the paragraph above…I don’t care. Part of my process the last 8 months involved having a million labs run on me. Some of them were thousands of dollars. But I did test positive for some parasites as well as had a few bands on a Lyme test come back. After reading through two decades of posts on this site of how those who ‘beat PFS’ did it and comparing that with the treatment options for Lyme/parasite infections, I elected to just treat my body like I had Lyme disease and go for an integrated holistic approach. It takes months, years to treat chronic Lyme disease so I’m prepared to be in this for the long haul. I’m not going to go into the reasons why I think the overwhelming majority of PFS (and other PFS-like syndrome) sufferers have some type of underlying infection or autoimmune disorder. That part doesn’t matter. But my current treatment approach has been steady for the past 3 months and is as follows:

  • Weekly high dose vitamin IV infusions (for health and detox)
  • The Restore Kit herbal treatment from Dr. Rawls
  • Daily probiotics from Seed
  • Weekly talk therapy sessions
  • Diet free of fast food and ‘junk’
  • Intentional sleep habits (set bedtime and wake time each day)
  • Daily red light therapy with Joovv unit I purchased
  • Daily hot baths (really helps with blood flow)
  • Herbal treatment by Naturopathic Doctor for Lyme
  • Drink tons of water/Stay hydrated
  • Ride my motorcycle every chance I get

I used to go weeks of not getting out of bed. Then it would be days. Then a day here and there. Now, most of my days are bearable. Definitely ups and downs. Good days and bad days. But I’m still here, still fighting and hopeful for continued improvement.

I salute the guys on here who have fought for years and years. You’re amazing inspirations to us all. If I had any advice to give to anyone now or in the future, it would be two things. 1. Do things you enjoy. Don’t put your life on hold for PFS. Buy that bike. Go on that trip. Make that friend. Those things are necessary distractions. and 2. Stay off forums as much as you can. It’s great to get answers and know others understand you, but don’t live on these things thinking you’re going to find the cure-all somehow. It can become a very unhealthy obsession and leave you depressed. Pick 15 minutes a day to log on and catch up, but don’t spend hours on end.

Hang in there everyone! I continue to pray and hope for that day I can log in here and say “I’M CURED!! SEE YA A-HOLES!!”. I kinda pray for the day we can all do that and shut this site down for good :-). But until then, stay strong. Be kind to yourself. There’s always something to live for and to hope for.

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Does brand really matter? Looking into this but Joov is pricey. Which size did you get?

I have no idea if brand matters. I went with Joovv just because it was rated well, but I do think you can buy them other places. I got the Joovv Max unit so it covers most of my body. I do it twice a day for 10 minutes each, and I only treat my front side. I’ve been using it consistently now for about 3 months and it definitely does do ‘something’. As far as PFS, it does increase blood flow to my groin area. I start flaccid and by the time it ends it’s larger/full. It’s said to also increase testosterone production, but I have no idea if it actually does. It also has definitely affected my body hair growth. My chest and facial hair are much fuller. And lastly, I feel like it helps with calming me and preparing me for sleep when I do it before bed.

Has anyone else tried red light therapy? I’m curious maybe I will buy one

Dang Joovv Max is so expensive

It did nothing for me. Sorry

How long did you do it for and how consistently?

8 weeks consistently

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@Mcbbould I’ve been doing red light therapy for almost 4 months now. I do it twice a day (waking and before bed) and I think I’ve missed like 3-4 times in that 4 months when I was out of town.

I enjoyed reading your post but this part really fucked me up. PFS has taken so much of my confidence and positive reinforcement. I always find that little voice in my head telling me that i’m worthless now that my body is shot to shit and i’m not as smart and sharp as I used to be. That’s probably the worst part of it, watching the change as if something switched off the day I took that pill. But yes, being kind to ourselves is essential if we want to move forward in any way. Thank you.

I have very similar skin issues and fat deposits that you describe. Did you notice the complexion of your skin changed? Does it tan normally as it did before or is it much more pale and rubbery? Did it thin at all? Thanks for posting.

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If red light is going to help just getting out in the sun on a summer’s day will give that effect. You’ll just get all the other parts of light too.

Some people respond well to the sun, others do not. You can probably find out what kind of person you are by just getting out in the sun without wasting money. I imagine that you don’t need to get sunburnt, I say that since people here often take the approach that if they think something will help, if it doesn’t then more of it probably will.

@Dknighten I agree with you that being kind to yourself is the hardest part in a lot of ways. But like you said, it’s essential. I’m not who I was before PFS and I’ll probably never be again, but I am still here. I have up and down days still. The down ones really suck when I feel defeated and worthless. The only thing that gets me through is knowing that down days are usually followed by good ones!

My complexion and skin changed completely in the last 8 months. My skin is ‘loose’ now compared to previously when it was much tighter and toned. It’s kind of rubbery/stretchy now and has an ‘alligator skin’ appearance to it (if that makes any sense). I spend a ton of time outdoors, so I’ve not really noticed any changes in my ability to tan. A lot of my skin changes are pretty in line with the classic collagen loss that happens later in life. I’m in my mid-30s, but my skin looks more like 50s+ in tone and texture.

Thank you for the update. It’s funny that my social anxiety decreased very much too. Most of the time I don’t give a fuck about other’s thoughts. But I can’t take advantage of it because my general anxiety is very high. Strange feeling.

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Yeah man, I have the exact same skin issues. it is super fucked up. Any changes with your muscles? Did they get really soft and flat?

@Dknighten yeah, definitely some muscular changes overall. But that’s also hard to say just because this has all been happening during lockdowns/COVID too, so some of that might be enjoying Netflix and carbs? I’m a pretty muscular guy who spent my life in the gym lifting, so I’m pretty in tune with changes. I’m still muscular, but when I flex it’s not ‘rock solid’ anymore. It flexes but it’s kind of an empty flex.

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Yes I know the empty flex. The flat feeling, like something is missing and not connected. Did the actual muscles get any softer or is that about the same? Sorry about the questions but, as i’m sure you know, these issues are super fucking weird and very hard to understand them unless you experience it lol

thank you for the responses and I wish you consistent improvement with time.

I have exactly the same thing, I have good sized muscles but I can flex my bicep and push it in with my finger. Very rarely does it get hard but it’s short lived

@Dknighten and @Lostinaustin I’m still a pretty muscular guy and I can move some weight in the weight room, but my muscles just aren’t as solid as they were before PFS. My muscles feel softer when I flex, but they can still perform. The problem is that I can’t ever tell if it’s a muscle change or if it’s my skin that has changed on top of the muscles?

I have the exact same thing I think it’s the muscle. I can increase my bench max like nothing but the muscle is like jello

Hey darn how are you getting on now mate? noticed any improvements with the above protocol?

I have the exact same thing. Muscles are still present with the same size, shape and strength behind them, but absolutely no density. They feel like marshmallows.