My story (the good and the bad)

Member Stories
#21

Quick update. Things have been better in the last few weeks. I have tried several things and some seemed to work better:

- 3-day fast: Positive impact on overall mood and well-being, but not on sexual sides.
- Acupuncture: Minimal results - probably just placebo or coincidental.
- Cryotherapy: Tried only once with no improvement. A 3 minute cold bath would to the trick also, if you believe this is the way to go.
- Diet #1 (cut out sugar, low gluten): Tried this for about a month. Did not see immediate results, if any. Too hard for me to keep this regimen 100% of the time, so I just try to go easy on sugar and gluten.
- Diet #2 (sorghum + turmeric): For the last 2 weeks, I have been eating sorghum and turmeric almost everyday (see the following topics for more details:
http://www.propeciahelp.com/forum/viewtopic.php?f=6&t=10939
http://www.propeciahelp.com/forum/viewtopic.php?f=6&t=10861
Results have been very positive for me. I will keep doing this as long as I keep feeling good.
- Increase vitamine D to 6000 UI per day (rather than 3000 UI): Also seemed to have a positive impact. I have removed the multi-vitamin Centrum from my daily intake to go easy on my liver, and surprisingly, I keep feeling good. Maybe a good dose of vitamin D is all it takes?
- Probiotics: I have only started this 4 days ago, but my stomach isn’t “growling” as much anymore, which I take as a positive sign. Libido and erection also seems better in last 4 days … coincidence? Maybe not…

Overall, it’s been a good 2 weeks. I didn’t have too many good days / weeks since this started so I’m really happy about this improvement. We all know there are up’s and down’s so I’m far from saying I’m cured, but it’s a start. Especially since the only pills I’m taking is vitamin D.

Still a long way to go, but I would say I feel 60% cured (ED) and 30% (libido).

At this point, my guess is that I have unresolved gut issues… I don’t have any mojor signs of this (other than my stomach growling), but I know many people don’t have sides. I will be booking an apointment to test for h.pylori. I just spoke with a local clinic who said there’s a 200$ cost for this test… I also need a doctor’s note, so it may take a few weeks before I get that.

More updates to come …

#22

Good luck

#23

After almost 3 weeks, things are still good and improving. Yesterday, I even had a spontaneous erection from holding a girl by the waist! Wow, that hadn’t happened in ages. I’m still too shaky to take it any further (erections aren’t perfect and tend to fade out quickly), but I’m confident the time will come.

I have also been trying abstinence for as long as I could, but it’s getting hard to go for more than a week for the last 2-3 weeks. Not so long ago, I could go for a month with no problem.

The funny thing though, is that I really need some stimulation to get going. It’s hard to get aroused just looking at women, and I’m still slow to get turned on. But porn will do the trick …

I’m staying with my regimen, as long as it keeps working!

#24

It may seem very strange, but I’m sure most of you can relate. PFS appears to minimize all feelings. I know it was hard for me to imagine being in love, and even hard to feel angry or take a fit. I have so many reasons to be angry at my ex girlfriend, but couldn’t. It just felt natural to simply “be nice”, and let everything go. This is one aspect of my personnality that most people around me can’t figure out these days… why am I being so nice in such a crappy situation.

In the last few weeks, I have tried a few things (notably sorghum, turmeric, and probiotics) and they helped me quite a bit. I had very noticeable improvements in my sexual sides. Today, I notived something that hadn’t happen for the longest time … feelings !!!

Yesterday, I had a date and I came back at night feeling that she actually had an effect on me. I’ve thought about her all day, wishing to see her again! Also, I got pretty angry at my ex-girlfriend and made a little scene, which is unusual.

To me, this is a clear sign that something has changed. I just hope it will keep improving.

#25

I have read someone else noted positive results from sorghum recently. Where did you get it from?

#26

I get it from a local organic grocery. It’s pretty hard to find, but you can also get it online. I am having as much as I can nowadays (morning and evening)!

Full topic here:
viewtopic.php?f=6&t=10939

#27

UPDATE.

27 months have passed since I developped PFS. Things have been up and down, but for the most part, pretty steady around 30-40%. Libido is still by far the most disturbing side effect. I’m 39 year’s old and I now accept that it will probably never be the same.

And now for the good news … I have been dating a girl for the last few months. I didn’t think this would be possible with my condition ! Of course, I had to come clear and tell her, and she was pretty supportive, especially considering she is really into sex (just my luck!). It’s impossible for me to perform like before, but we find ways, and I can actually find some “pleasure” in pleasuring her. Not like before though… but there are many things we can do. It’s just hard because I’m acting like a robot while she is very into it. But hey, still better than being alone!

I’m trying to get on with my life, as hard as it is. Additionnaly to the sexual sides (low/absence of libido, ED, ejaculation disorder), I still suffer from anxiety and anhedonia. It is very hard for me to enjoy anything. A trip, vacation, a nice dinner, etc. Nothing makes me genuinely happy, which is really hard.

I try to follow my regimen as much as possible:

  • Exercice 3x a week
  • Low sugar, low glutten, lots of veggies
  • Try to limit stressful situations (which is why I’m less present on this board!)
  • Use the help of a naturopath, doctor, endo, sexologist when needed

I also use the following products:

  • Probiotics 2x a day
  • 10 mg T3 (thyroid)
  • Vitamin D

On and off:

  • Centrum
  • Fish oil
  • Tudca
  • Zinc
  • Ginseng
  • Tribbulus

I stopped eating sorghum at some point and my libido came down. I have just got back on it yesterday. Hopefully it will have the same effect as before.

Oh ! And I tried cialis and the blue pill, but they had absolutely 0 effect !! So I dropped that … I am in pretty good shape, and I think all those pills do is increase bloodflow. So with 0 libido, there is 0 happening down there. I get nocturnal erections quite a bit, so obviously, there’s no mechanical problem.

Anyways, I feel a little discouraged that things haven’t improved more over the course of almost 2.5 years, but I believe I can make prettend that I have a normal life ! … it’s a start.

Still hopping things will continue to improve, but at least I found a way to be functionnal, and we’ll see where that leads.

I’ll keep in touch.

1 Like
#28

Just thought I would share that I had the best week-end in ages ! I felt somewhat alive again, could enjoy the small things, and the perfect weather. Enjoyed being with my girlfriend too, biking, hiking, having a nive dinner, etc. I didn’t think this would happen anytime soon.

Just to be clear, I’m nowhere near recovered, but it’s great to realize that I could enjoy some things in life … almost giving me the impression that I can be normal for a given period of time.

Sexual sides are still present though. Libido, ED, and low sensibility makes it hard to enjoy sex, but I’m focussing my efforts towards her, and can manage to do OK.

By the way, I added tongkat ali to the list of supplements a few days ago. Seemed to help alot !

Cheers!

#29

Been feeling pretty good lately. Just to give my body a rest from all the supplements, I will take at least a week break from everything (except probitics), starting today.

If I feel the same in a week, I will continue for as long as I can … if it starts wearing out, I will give creatine and Tongkat Ali a try together. I would also like to plug in a 2 or 3 days fast in the next week or so.

#30

I’ve been on no supplements (except zinc and probiotics) for the last 3 days. It’s crazy how all symptoms come back to hard ! Primarily anhedonia (enjoyment of life in general), absence of libido, a little brain fog (that I would rather desribe as “head pressure”), ED (but this is always the case).

In the first 24-48 hours, I felt like a heroin-addict that just quit ! Feels like my body is instable and the chemicals aren’t right. Anyway, today is a little better…

I like to compare PFS with the flu, in the sense that you can fight the symptoms (you will feel a little better), but as soon as you stop the medications (or supps), everything hits back. Of course, flu eventually goes away, as PFS does not.

Anyways, I think it’s a good thing to have a few days / weeks nos and then with no medication or supplement intake, just to give our bodies a break, and also avoid tolerance.

#31

How are you? Are you still taking the Sorghum and Probiotics? I am desperate for help as my muscle wasting has accelerated and am freaking out

#32

Hey man,

how have you been doing? Are you still taking T3? If so I’m curious, did you get a prescription for it or did you find it online?

#33

Hey guys.

Sorghum is still part of my diet but I don’t crazy with it though. I usually make an organic bone broth and use it to cook the sorghum. I would say that I go through about one pouch every 8 weeks. Once cooked, that may be about 8 cups… so basically about 1.5 cups per week.

As for the probiotics, yes I still use them. I vary the brand and amoint but always try to take the quality ones (refrigirated). I also add a probiotic protein in my morning shake. It may be worth a try for you to add proteins to you diet … ?

Flamingpie, I haven’t used T3 in a long time. I just tried it once for a few weeks. At that time I had it prescribbed by my endo.

All in all, things have been going ok. I like to believe that I am slowly but surely improving. Mentally and emotionally I have been much better. Libido and sensibility can still improve alot, but at least I can go through my days without thinking about PFS 100% of the time, which is a huge relief!

Hope this helps. Cheers!

#34

Hi progress can I ask you how long after you quit did your shrinkage reverse?

#35

Good question. Probably after 6-8 months but it’s really hard for me to remember. But the important thing to know is that the only reason I was able to reverse shrinkage is because I used a penis pump to keep having erections (while I couldn’t have any erections whatsoever - even nocturnal). I used it several times a week back then to prevent any further atrophy, and still use it once or twice a month nowadays to keep the gains. It may have been the smartest thing I have done in this mess.

Needless to say, I strongly suggest it for anyone stuck with this issue.

Hope this helps.

#36

Hi progress!
Still here? Recovered or recovering?

#37

Hey noprop. I come very rarely on this forum, but keep posting updates elsewhere. I’m approaching 4 years off now. Things have been overall good as of the 2-year mark… I’ve been with a girl for almost 2 years, I can live my life fairly normally. I still have sides that impact my life, like low libido, and emotional flatness, but I have learned to live and deal with it. I don’t know if I will ever be like before, and still so many questions remain unandswered, but I do feel like life is liveable now.

Cheers!

#38

Oh, you answered very fast fo someone who is very rarely on this platform. What a luck!
It is great to hear you find a cure. Best

#39

I believe that he answered quickly noprop because he will have ticked the box when he posts in a thread requesting a notification when a reply is posted.

#40

Bingo. :wink:

And just to be clear, I didn’t find a cure … I basically found a way to manage and live with my symptoms. Very different.