It’s likely that the crash is due to LH suppression by progesterone. Try to use something that boosts LH such as Tongkat Ali / Tribulus, just once a week though, or your body will get used to that.
My new tests confirmed the old: I have low androstenedione level. Interestingly, progesterone is a precursor of that it seems, specifically:17-Hydroxyprogesterone.
My question is: are you guys testing androstenedione too?
Hah my dr tested all the major hormones like test esto tsh cortisol … they all came wacky but in range and told me to change my diet.
So I changed my diet and funny enough its helped… Although im still not 100%
Have you gone back on progesteron… its the only thing i think that has any merit here…
Although i am taking creatine
my doc asked me to stop everything so we can get a more accurate test next time, so I am stopping for a month or two, not sure I can do that, let’s see…
In the meantime I can probably work on eating healthier, light exercise (so I don’t crash,…),…
Bjamin,
I am not sure if I understand you correctly. Did the change of your diet improve your situation? What kind of diet are you on and what got better?
Eating more veggies and less carbs in the morning helped. Lifting weights and doing cardio helps.
Living like a monk helps. I have another appointment with an endo but I doubt ill see anything beneficial coming out of it other than useless blood tests and another textbook dr not knowing what to do.
The problem we have is one of enzymes genes receptors neurotransmitters its a cascade effect. How could any dr possibly figure out how to help us.
Either way I push on because we must.
I was feeling better than average until today. This morning I had farm salmon (from chile) and blackberries for breakfast, and boom, I crashed after. I had brain fog which I haven’t had to any serious extent for several months, and all the other sides followed.
It might be a coincident. This is not the first time I have the same brand of salmon and I cannot recall whether I crashed after that, maybe I felt worse but did not link it.
All I know is that farm salmon are given astaxanthin to create the pinkish color in nature. Now astaxanthin is a 5-alpha reeducates inhibitor. enough said. Any thoughts?
Numbduck how you doing no update to your thread in a while are you still using progesterone?
I mentioned earlier that a girl was visiting me and i was very stressed about that, especially that I was not doing well at all. Here is what I have done and has worked much better than expected:
a week before I took some progesterone followed by a very small dose of andactrim, the size of a pea really not more every day. Taking less seems to work better since i did not have pimples this time.
The day she came I started taking Tongat ali (TA), i felt immediately better on TA, I took it every day for the first 4 days. I got libido and I took ED medications so I was able to perform. TA helped with the depression too.
The effects have worn out since the last dose, after 3 days of the last dose, so my libido dropped again, but mentally I still feel quite OK.
This is what I have taken but my feeling is that TA made the difference. On the third day I felt symptoms of an impending crash but took TA again and felt better after few hours. I am just taking one pill (Have to check how many mg).
The question is: now she is gone and I do not have to perform, DO I CONTINUE TA? It seems to have helped mentally and with numbness too, would be amazing if I could stay like this forever. It is FAR FAR from ideal/normal, but hell beats the numbness/fog/depression and other symptoms I have…
Thoughts appreciated…
Mate good results with prog.
I found progesterone along with 6mg clomid once a week makes it work for me… stacked with dht probably amazing.
Hi all,
There used to be a recovery sub-forum, I can’t see it. I haven’t been here in a long time.
I wonder even whether by now there are any breakthroughs scientifically, or experimentally.
I came here to say, I recovered enough to live a life not thinking about PFS anymore. Hopefully that would be encouraging news for some.
Is there a magic formula? No, I think time was the most important factors. It has been 7 years of misery, but each year I got about 10% better, and somehow the last year I improved better than any year.
I want to keep this post on the shorter side. I had virtually all symptoms back in 2013: brain fog, numbness (thus my handle), ED, 0 libido. Libido and occasional numbness are the ones that stuck the longest. It only got better a year ago. Perhaps I am not 100% of pre-PFS libido, nor do I want to be. I am 7 years older, and don’t want to be spending my time watching porn or chasing girls. I have a girlfriend, and our sex life is normal.
I used to (and sometimes still) takes Cialis, but it is more of a confidence booster, and enhancer, but as of this year I feel I don’t need it anymore.
Here is what I have done, and this is not an advice. Except for a couple of items, highlighted below:
1- 2013: Panicked, took T took supplements, took vitamin D, exercised, everything backfired, even exercise.
2- 2014-15: I did occasional progesterone, once every couple of weeks. I had researched it a bit, beforehand. It helped.
3-2016-2019: I started decreasing carbs systematically, going occasionally on pure keto diet. I was able to go back and exercise. But I still had symptoms, they wax and wane, 2 good months, 2 bad months, and so on. Taking any supplement would backfire (even Vit D!).
4-2019-2020: I removed all estrogenic items and foods from my house and my diet. Shampoos, soaps, … everything that had paraben went into the trash. Since then, I don’t recall having bad months. I continued with low carbs. Then I started to notice that when I took Vit D it helped! Somehow in the beginning it doesn’t, but now if I take Vit D, my libido is just too high (as in pre-fin) and I don’t want it to be that high. So I only take it occasionally.
I can tell physiologically things have changed. I used to get pimples from every drop of sugar, couldn’t handle many foods, and so on. Now this has not happened since about a year. I binged on carbs the last few months (quite stressful) and did not get worse.
All in all, I don’t think about PFS anymore. I think just like most recovery stories, everyone wants to hear a 100% and I can tell you 95% is as good as 100%. I wasted too much time in my life thinking about sex. Now I feel I can control that.
I am curious: Did anyone file a lawsuit against Merck? I know a lawyer who has filed lawsuits against pharmaceuticals in the past, but I am not eager to disclose my problem unless if I feel it would help. I am assuming some have tried. Just wondering what happened on that front. I hear in Canada and other countries they were sued?
Thanks for listening. While I don’t think about PFS, believe me I still think about you and about my long fight with it. No one deserves this. I Just wanted to wait many months of fully recovery without making such a statement.
PS: my hairloss stopped for all this period, and now I can see a tiny increase. But it doesn’t bother me much. I try to forgive myself for taking a hairloss drug, it is hard to go bald at a young age.
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Thanks so much for sharing @numbduck, it’s great to hear someone who’s experienced a recovery that many years into having PFS. I appreciate you coming back to tell us all.
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Good you recover bro. Go enjoy life, you deserve it
Hy numb duck congratulations Buddy. 4 years for me, I am also a bit better.
Unfortunately numbness and ED is my worst symptom,
How long does it take for numbness to go away.
Was there ups and downs in terms of numbness.
Mine is almost constant.
Congrats NumbDuck! My symptoms and story is very similar to yours. My libido is gone now and numbness has returned. My concern is exercising helps the libido and numbness but when I exercise I crash into intense brain fog, fatigue and dizziness for two weeks.
Like your story, food and alcohol seems to affect the numbness. I am trying to get guidance online on a diet I should follow and which major foods that are estrogenic I should avoid. What is the basis of your diet now because so many foods seem to be potentially an issue?
@Sunny: numbness was the second longest symptom that lasted about 6 years. But it decreased in frequency sometimes around the 3-4 year mark. It was very much affected by food. Sugar for example. Now I can eat a cake with no problem. But it took a long period of careful diet before getting here.
@Trinov: Frankly Keo diet is the safest. I have done that for some time. Last 2 years when I had a flare up I would go keto for a week or more. But I am not recommending this because (1) it’s tough, (2) bodies don’t react the same (3) you can achieve same improvement by cutting carbs (paleo) and avoiding fruits and trigger veggies. The problem is that i takes a long time to figure out those trigger veggies. Maybe I should think about this and make a list, but from the op of my mind: broccoli, squash, soy beans, … Helpful veggies: Kale and spinash. Keep in mind that these vary across people, so I cannot make a strong recommendation for diet, except that it should be healthy and as close to organic as possible.
PS: I consume only organic meat.
I have a story for you for sure. But yes, i have had numbness on backside of penis below glans and in my ballsack for 14 months now. Even in the perineum area which has also atrophied a ton. Some pelvic floor weakness in that area. Disrupted ejaculation and a lot less ejaculate, like 2/3 probably, No loss of libido at all though, and erections are harder to get but still possible. Works fine with ED meds for sure. Sometimes it is colder and seems to be more numb in the mornings and yes after jerking off it is more numb. Some days it seems like its getting better, but I know it is just my body losing muscle memory and centralizing probably.
I just felt compelled to update you, this is the least I can do for this community that I have been following for over a decade.
I am 10years out. The situation has improved further since my last post. There are very few things that can set me back now. I can drink copious amount of green tea without problem. Mint gives me somehing of mild numbness, but goes away in a day. I like mint, I don’t shy away from it . I think I become more assertive about it — not afraid of the symptoms, which no doubt helped.
Also PE has improved since my last post.
I might not be the best to provide an advise since it took 7 years for me to feel almost normal, and a few more to 100% forget about it. But the few things that helped are mentioned in my earlier post:
- carbs were definitely a problem. I think it is bad for a lot of things, my belly says.
- there are some chemicals that you might be using that are giving you setbacks, perhaps on a daily basis, and you are not aware. For example, make sure to avoid Paraben. This one would give me problem even 7 years out, and I was not aware I was using it on a daily basis (moisturizer, etc). There is no downside to avoiding paraben, except slightly more expensive products.
- See the type of foods that tend to trigger sx for people. E.g. mint, green tea, coffee, pampkins, i forgot the list.
- exercising the legs definitely helps with libido, up until today. In the first year it did not work that way, but later on it did. In fact, up to today, if I want to be real horny, that is what I do. It is now automatic. I can be more horny than a woman in her 30s, everyday, if I want. But I don’t want that.
and if you are young consider becoming an MD. This world needs smart and compassionate MDs/researchers.
Anti-depressants
I know some of us avoided anti-depressants — despite our depression — because of potential side effects. FYI: I tried Lamotrigine, modafinil, bupropion, mirtazapine and all were fine.
Finally, I want to say two things that are not contradictory:
-
PFS is real. I was not producing sebum/earwax (now I am). less sweating. Women told me my smell has changed remarkably to the worst (women don’t shy away from saying this that demoralize you).
-
Consider reading John Sarno, MD. I used to suffer from CPPS. Gone. I used to suffer from daily headache. Gone. I used to have frequent back pain/neck pain, go to PT/chiro frequently. I did not have such pain in 3 years. Not a single hour of back pain despite long drives, lifting, etc. It sounds unbelievable, but true.
The fact that a physical condition is real and exist does not mean it cannot improve with a mind-body approach. There is no one on earth that I am more grateful to than Dr Sarno. I suspect that fear, to a great extent, contributed to the “hard flaccid” part in the first 6 months of this terrible experience back 10 years ago.
It took 3 weeks for Sarno’s approach to work, just as he predicted.
I will check in once in a while and hope that next time, I read “the Cure is finally here!”
Warm wishes
SensitiveDuck
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Even though I’m 4 years in without significant improvements, these posts give me so much strength and hope to keep on pushing.
Thank you very much for coming back every once in a while and sharing your thoughts.
Numb duck- how many years or how long did it take before ear wax and sweat and Oil returned each?