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:
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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.
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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.
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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.
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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.