Hey man, how are you doing?
I read in this thread that you have used creatine to mitigate the effects in the past, saying a lot of positive things about it, are you still taking it?
I had a bad experience with it but it could just be coincidence, and i’ve read in the forum that it may have antiandrogenic effects but I haven’t found any evidence of this on the internet. Best wishes.
I am doing okay I guess. Could be better but am not at my worst either.
Yeah I had great results with creatine and even after I quit the good effects remained.
A few months after that I decided to try daily cialis and it ruined me. Put me back to worse than before creatine. I have been using it for the last couple of weeks again but so far nothing have changed.
I’m planning to update this thread but haven’t found the drive to do it yet.
I hate to be that guy but the most important thing you can do to help yourself is donate to research and raise awareness. There’s no known cure for this condition and self experimentation isn’t worth it.
Hey @Erik, while I agree with your sentiment wholeheartedly, many patients here don’t really expect to cure themselves with the things they take and mostly engage in symptom management, which is understandable.
Many people here including @Cbrandel have donated serious sums to research efforts. Not all people who take supplements are against the research or vice versa, so please keep that in mind.
We have systems in place such as the self-reporting form to document any cases of self-experimentation better, and I’m sure Cbrandel was planning on using it to document his findings.
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Apologies, perhaps my comment came across in a way I didn’t intend.
Mentally and physically I am much better yes.
Sexually I am worse than before (Cialis ruined the last 20% of feeling I had left).
I don’t recommend anything tbh and certainly not forskolin. In my experience forskolin helped only with my dry eyes and allergies. Not much with anything else and it went back to baseline within a couple of weeks after I quit.
Feeling a little down today, listened to some music and could feel my eyes tear up about not being able to make love to a woman anymore.
While many of my symptoms have been better lately, my penis is still so numb I could chop it off without batting an eye.
Good parts are that my muscle and joints have been better and better lately. Actually my joints feel better than they even did before PFS. Not sure what happened there, used 6mg of Boron for 3 days (MTW) but got an extreme headache so I quit. Also used 10mg of cialis (W, in one serving) and woke up on Thursday with joints that didn’t feel dry and creaky. After some physical therapy my joints feel stable and well lubricated. Before PFS my joints felt stable but always kind of dry.
As I said, no idea exactly what happened but I’ll take what I can get. Another positive thing that I’ve noticed since PFS is that I rarely get headaches anymore, usually I had a headache once a week and migraines a handful of times a year.
While this whole situation sucks, I am trying to pick some raisins out of the cake. I know many people report increase in headaches, but for some reason it’s been the opposite for me.
If I could make some progress in the penile department as well I could live my life happily, I have no doubt about it.
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I’m having a surgery tomorrow morning, in general anesthesia.
Will report back if I get any changes to my symptoms after.
Surgery is not related to PFS in any way otherwise.
Good luck with the surgery. I hope it’s nothing serious.
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Just a quick update. Woke up from surgery not to long ago and it was an success. So all good. Thanks to everyone who wished me good luck.
Hopefully PFS will not hinder the healing.
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Hi, how is your sleeping now? Did anything help resolve it? I’ve had a bad crash last two days and can only get a couple of hours.
It’s good actually. The only thing that ever helped me consistently have been steady state cardio and also being in a sauna.
Self-reporting form
- Name of the therapy/substance: Cialis.
- Dosage: 5mg.
- How often you took it: Once daily.
- Status
- Still using [ ]
- Stopped with no lasting change to initial symptoms [ ]
- Stopped with persistent change to symptoms [X]
- Duration of use: Days [ ] Months [~2] Years [ ]
- Response when you started:
- Greatly improved [ ]
- Slightly improved [X]
- Stayed the same [ ]
- Slightly worsened [ ]
- Greatly worsened [ ]
- Current response (if you’re still using) OR Response in the time before you stopped the treatment
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ ]
- Slightly worsened [X]
- Greatly worsened [ ]
- Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ ]
- Slightly worsened [X+]
- Greatly worsened [ ]
Gave me a lot of muscle/nerve issues, possibly worsening of skin as well. Side effects slowly crept in so was hard to notice at first. Be careful if you take this route. Initially helped with erections, but in the end had opposite effects. Persistently higher blood pressure even 6+ months after quitting.
Had blood work after worsening, but no changes.
Self-reporting form
- Name of the therapy/substance: Creatine.
- Dosage: 5g.
- How often you took it: Daily.
- Status
- Still using [ ]
- Stopped with no lasting change to initial symptoms [ ]
- Stopped with persistent change to symptoms [X]
- Duration of use: Days [ ] Months [~6] Years [ ]
- Response when you started:
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [X]
- Slightly worsened [ ]
- Greatly worsened [ ]
- Current response (if you’re still using) OR Response in the time before you stopped the treatment
- Greatly improved [ ]
- Slightly improved [X]
- Stayed the same [ ]
- Slightly worsened [ ]
- Greatly worsened [ ]
- Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
- Greatly improved [ ]
- Slightly improved [X]
- Stayed the same [ ]
- Slightly worsened [ ]
- Greatly worsened [ ]
Helped with everything but sleep, especially sexual symptoms. Used on two occasions, once 6 months once 4 months. Worse effect after getting burnt by Cialis.
Self-reporting form
- Name of the therapy/substance: Pine bark extract / Pycnogenol
- Dosage: 100mg (65% extract).
- How often you took it: Once daily.
- Status
- Still using [ ]
- Stopped with no lasting change to initial symptoms [ ]
- Stopped with persistent change to symptoms [X]
- Duration of use: Days [21] Months [ ] Years [ ]
- Response when you started:
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [X]
- Slightly worsened [ ]
- Greatly worsened [ ]
- Current response (if you’re still using) OR Response in the time before you stopped the treatment
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ ]
- Slightly worsened [X]
- Greatly worsened [ ]
- Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [x]
- Slightly worsened [x]
- Greatly worsened [ ]
Used for increased NO / better penile blood flow but it’s a potent 5AR inhibitor (which I didn’t know at the time). Please do not use this. I’m not 100% if I got back to baseline, but it made my erections worse.
Self-reporting form
- Name of the therapy/substance: Boron.
- Dosage: 1.5-9mg
- How often you took it: Once daily.
- Status
- Still using [ ]
- Stopped with no lasting change to initial symptoms [X]
- Stopped with persistent change to symptoms [ ]
- Duration of use: Days [ ] Months [1] Years [ ]
- Response when you started:
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [X]
- Slightly worsened [ ]
- Greatly worsened [ ]
- Current response (if you’re still using) OR Response in the time before you stopped the treatment
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [X]
- Slightly worsened [ ]
- Greatly worsened [ ]
- Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [X]
- Slightly worsened [ ]
- Greatly worsened [ ]
Gave me an intense headache at 9mg that lasted 3 days.
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Healing been good, barely needed pain meds (due to PFS?) and where they opened me up have been healing very nicely.
Felt “off” mentally for maybe 2 weeks. Not sure if due to the general anesthesia, the oxycodone I got, the antibiotics or just due to healing process itself.
Either way it seems to have lifted now and nothing else seems to have been made persistently worse.
Try to avoid surgery, but if you really need it and are afraid of PFS becoming worse I can say for me that wasn’t the case.
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I would stay away from Creatine. I had severe reaction to even a very small amount. What you experienced May or may not be a coincidence but it’s not worth the risk to push it further in my opinion.
Short update,
Had a follow up with my urologist. He will send me for a pelvic MRI and also to a neurologist so they can examine my nerves.
I have had prostate exams from him twice now and I do not have any prostate inflammation what so ever.
So it seems that prostate inflammation and numb penis are two separate entities.
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