The story of propeciAUS

Member Stories
#1

  1. Where are you from (country)? Australia

  2. 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?) I googled “ED propecia” - I knew that ED was a side effect but it wasn’t until I experienced it that I thought to do some research.

  3. What is your current age, height, weight? I am 27, standing at 175cm, weighing in at 70kgs.

  4. Do you excercise regularly? If so, what type of excercise? I play football (soccer) at a semi-pro level (three sessions per week, and one-two games per week, during the season). I also work out at the gym five mornings per week.

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? I’d like to think I have a balanced diet.

  6. Why did you take Finasteride (hair loss, BPH, other)? Hair loss.

  7. For how long did you take Finasteride (weeks/months/years)? I took it for about 2.5 years.

  8. How old were you, and WHEN (date) did you start Finasteride? 24 years of age - I think it was around Aug 2008… Going to go thru receipts when I get home from work to confirm.

  9. How old were you when you quit, and WHEN (date) did you quit? I quit at 26, in April 2011.

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

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? Propecia.

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1mg/day. One thing I’ve noticed is that in the early stages I took the pill in the morning but I decided to take it at night after about 1.5yrs - interestingly close to when my symptoms started to worsen.

  13. How long into your use of Finasteride did you notice the onset of side effects? I noticed a drop in libido very early into taking the pill, however I still desired sex (just nowhere near as much). Then, after about a year and eight months I experienced my first episode of ED (lost an erection during sex and couldn’t get it back). I thought this might be an isolated incident. I didn’t have sex again until quite a few months later, but then it happened again. That was the day I did some research. That was the day I realised I’d f’d my life. That was the day I quit propecia. It was also the day I vowed I would get my life back.

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    I will mark all the effects below that I have experienced, although at this point I would like to say that NONE of the side effects have necessarily been consistent - although I’ve not had sex since that day (some seven months ago, now). This point will need some clarification, which I will provide further below.

Put an X beside all that apply:

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
[x] Watery Ejaculate
[x] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

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

Physical
[x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[x] Testicular Pain
[x] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[x] 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
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    I discussed the whole situation with my doctor. He suggested I try beat the problem by raising my testosterone through a fitness regime and healthy eating. I immediately started working out more (I’m now at 5 gym/weights sessions per week) and I feel like my testosterone levels have improved but I have not had them tested. After about 3 months of this I noticed my mental sides went away and I was really starting to burn fat that had accumulated and I was also putting on muscle. I have dropped 5kgs, which must all be fat, as I have built a lot of muscle.

  2. If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)? I had blood tests taken for Testosterone and some other things. I would have liked to have tested for more but my doctor suggested starting with that. My Testosterone came out in the low-range of what is considered normal. There must be a different system in the US for measuring Test. because mine came out at 13 where 8 was considered low but I think a number in the 30s was considered high. I am sure (but have not tested it lately) that this is higher now. It must be.

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

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
    When I started taking propecia, I was in a relationship that was about 5-6 years strong. My girlfriend at the time didn’t want me to take it once I told her about the sexual sides but I STUPIDLY ignored her advice, telling her the symptoms would disappear if I stopped the drug. She noticed that my sex drive was not as strong and I noticed it too, but we were still having consistent sex and we were both enjoying it. Other issues complicated things and we broke up after I had been on the drug for about a year. I then went on the rebound and had sex with a few different girls, with no problem whatsoever, except that I didn’t come very often. Perhaps a separate issue. I experienced ED for the first time in about August last year, roughly two years after commencing propecia. Then, when I experienced it again in April this year, I quit, as noted above.

As mentioned above, I used diet and exercise to TRY to beat this. I feel it worked to some extent. I have never had a worse period in my life than when I experienced my ‘crash’ in about May of this year. I could barely get it up at that stage - even watching porn - and I was waking up without my morning wood, which wasn’t ever a (noticeable) problem in the past. I had brain fog, I had all the cognitive issues that I noted above. I thought that my life was over, but I still had a tiny bit of hope that time would heal this. I feel, however, that stressing about the situation made it WAY worse. I decided to be positive and I took to the fitness regime to try and boost my testosterone, which I think worked quite well. I also stopped visiting this forum (as a non-member) because the stories were getting me down. I started getting morning wood back and spontaneous erections, but I was consciously abstaining from sex until I met a girl I felt was worth pursuing. ALL the cognitive issues went away, as did the pain to my testes. Still, I was at a point where I almost joined just to post in the ‘recoveries’ section, mainly to give hope to those of you who have recently come off the drug. I even told a lot of the friends that knew about my situation that I no longer had a problem. Now, while I’m still positive about the whole thing, I’m not 100% sure I’m healed. (In fact, I was never fully healed, but had managed to put in some mechanisms to deal with it.)

I’ve just started seeing a new girl - probably the girl of my dreams - but have not yet engaged in intercourse with her after two months of dating. I’m taking the ‘old’ approach where we are getting to know each other before sex. But I know that she likes sex (I mean, who doesn’t). Unfortunately, this girl has come along at the worst time - I’ve been ridiculously stressed at work, and I guess I’ve been stressing a bit over her - but most of my stress has come from this: my morning wood has disappeared again, and it’s not as responsive to masturbation as it has been in recent months! I’ve noticed a couple of ‘secondary crashes’ in a few tales and I’m wondering if that is happening to me. It’s making me anxious about sleeping with this girl because I’m sure I won’t perform, even though in the first few dates I was getting good movement below the belt just from kissing her. Kissing her last night gave me nothing. Stress related, or secondary crash related? I’m trying to relax about the situation but I swear my ability to relax has been hampered by this drug. I used to be able to switch off whenever I wanted. Now thoughts haunt me! Argh.

Sorry for the long story. I am hoping that my problem is just related to my recent bout of stress but I felt I needed to come on here to vent, and possibly provide a bit of help (no matter how small) in finding a solution. Deep down, I’ve got a feeling that I haven’t shaken this. I really hope a cure is around the corner.

I just informed the lawyer in charge of the mass tort lawsuit that I would like to take action; they are going to get back to me, but I’ve noticed that some international people said they are not taking international cases on. I hope they’ve changed their mind. The person I spoke with seemed to think they could help me. If I have to suffer with this problem then I want those mofos to pay! Peace.

#2

Try to get the recommended bloodwork asap:

viewtopic.php?f=4&t=92

Your doctor is not correct in looking only at testosterone as finasteride affects a number of hormonal pathways. The manufacturer’s product literature states that both testosterone and estrogen are raised on average 15% while DHT is lowered approximately 65% in just the first 24 hours. It also affects the cortisol and allopregnalone pathways.

You should read it first - propeciahelp.com - front-to-back before beginning on the forum. Other people have reported improvements after stopping finasteride only to have the symptoms reoccur later, so you’re not alone in this regard.

Some things that have been reported to help improve long-term sides from finasteride are:

eating a paleo diet (a raw food diet and fasting have also been reported to give benefits to PFS sufferers)
eliminating sugars, caffeine, alcohol, and bread
getting enough rest - listen to your body here
not overdoing sexual activity or masturbation especially if you’re in a fragile recovery period - maybe once every three days

There are different testosterone ranges for different age groups, do some research online about optimal testosterone levels for your age.

#3

Hi martinM, thanks for your advice.

I’ve had a feeling my cortisol levels are off because of my reduced ability to cope with stress lately. Apart from that, the only ‘persistent’ issue has been ED… But yes, I should get my bloodwork done - I agree. Once my workload calms down in the next week or so I’ll be looking at getting the tests done.

I have actually done a fair bit of reading of this forum, having visited it some 6-7 months ago and having revisited in between. By no means am I claiming to have a true understanding of the issues at hand - but please understand that sometimes reading about some symptoms has made me freak out and stress more, something I’m trying to avoid right now.

Some things I forgot to include earlier:
I have improved my diet a fair bit - but it’s not a complete paleo diet. Despite this, I have been taking a multivitamin, D3, Magnesium, Calcium, and vit C supplements. I might add Zinc, too. I also saw a little article in the Aussie Men’s Health that suggested some foods to lower blood pressure (which has been reading higher than normal in recent years) - these include watermelon, bananas, and celery.

I still have a morning coffee and still drink black tea once or twice a day. I might look to eliminate these to see if there’s any improvement. I have never really enjoyed alcohol consumption much due to my elite athlete background so this isn’t so much of an issue. I’ve also tried to be conscious of getting good rest and controlling my masturbation… Interestingly, the last few weeks (where I feel I have regressed a bit) have coincided with poor sleep patterns and added stress. So perhaps I’m worrying about the whole thing a bit too much. I woke up with morning glory this morning after a week or so without (which was making me stress even more).

I’m not going to read too much into all that tho, because I think I need to have a good look at the ‘overall picture’ so I will take your advice and get my bloods done, return to my healthy sleeping pattern, stress less, and hopefully continue with my recovery, no matter how slow it might be going.

Also, here’s a shout out to any Aussie guys dealing with this issue. I’ve already heard from one. I’d be keen on chatting to any others that are out there (even if you haven’t joined yet) because I’d be keen on networking with some of you so we can deal with some local issues (doctors, legal stuff, etc) together. PM me. Peace.

#4

I POSTED THIS IN THE IHP THEORY THREAD BUT THOUGHT I SHOULD ADD IT TO MY OWN MEMBER STORY:

I’m real keen to follow this IHP or iPFS protocol. Xhorndog’s mentioned a book or two. The one I read over the New Year period is called “Lessons from the Miracle Doctors” by Jon Barron. When I was reading it, I was amazed by how influential all these other systems (digestive, immune) are to our bodies and, possibly, our situation. I’ve not read the Natasha Campbell-McBride book but I think I will, sounds more in-depth than the Barron book.

I’m starting to document my recovery (I’m thinking positive here!) by keeping a daily journal that includes what I eat and how I feel. This will help me report back to you guys.

This is what I’ve done so far:

  • Cut caffeine and sugary drinks from my diet; I now drink only herbal teas and water
  • Introduced probiotics and digestive enzymes
  • Trying to cut dairy from my diet, I’m turning to almond milk for the rare occasions that I’ll need milk (ie cereal)
  • Cut alcohol altogether
  • I’ve been trying to eat anti-estrogen foods (such as eating raw broccoli and cauliflower) every day, with the exception of flax seed oil, which I’ve been having with my cereal for omega 3s… altho contemplating switching to fish oil instead
  • Limited my meat intake, but when I do eat meat, I’m trying to make it organic. I live in Australia and we have kangaroo meat here which is meant to be so much healthier than beef and free of antibiotics found in typical meat

What I plan to do:

  • In early March I’m planning on doing a 10-day water fast. This is going to kick-start my recovery and will signal the start of a new me. I will come off the fast by drinking vegetable juices. I’m still looking into the best way to do this but I definitely know it will be in early March because my girlfriend will be away for almost two weeks so I won’t be having sex (I won’t be taking viagra/cialis and won’t be expending energy during a fragile time)
  • I will then do a ‘colon cleanse’ through herbal colon activators after I start eating food again
  • A heavy-metal cleanse
  • Kidney flush
  • Some sort of liver detox about a month or so later
  • Blood cleanse
  • A day of fasting each week
  • Take a serious look at my diet. I will introduce bone broths and more types of probiotics. I will also keep my calorie intake low

In terms of anti-fungals:
I haven’t ruled these out by any means, but I will be aiming to see what my body can accomplish first, and will look to natural anti-fungals like coconut oil.

Symptoms at this point in time:

  • ED, but I still often have nocturnals and morning erections
  • Lower libido
  • Shrinkage
  • Depression, occasional anxiety
#5

I’m beginning my 10-day water fast tomorrow. Today, I’ve cut solid meals and I’m only having soups, green tea, and water. I feel hungry doing this already!

Unfortunately I still haven’t had thorough blood tests done - it might have been a good idea to have them done prior to a fast and then use it as a gauge to see if anything has changed after the ten days. I have to go ahead with the fast now tho, because my gf goes away for exactly 10 days tomorrow and I want to do it while she’s not here. One thing I can test is my blood pressure, which is high for someone who is aerobically fit (semi-pro athlete). I’ve read that fasting can bring your blood pressure down.

To end the fast I will do a couple of days of juices and slowly incorporate food in the way of bone broths and soups etc. Then, I will embark on a strict diet similar to a GAPS/Paleo one. I’m sure a strict diet can help my body to turn around the damage done by this poison.

Will keep a journal and update with details occasionally.

#6

Good luck buddy, stay focussed ok. Good to see your determination. Hey why cant you just go and get some blood tests in the next few days?

#7

Hey propeciaAUS
great to see you try to get out of this misery. It is a tough way. Keep us updated.