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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Thanks for your updates, much appreciated! I hope your are doing better. Also great that you found someone who seems to take you seriously, that’s not easy to find. Are you located in Stockholm or nearby?
I am doing okay, no more no less. I feel like some of the damage I had cialis is going back to baseline so that’s nice. Although nothing to spectacular.
Yeah things are moving along slow and steady. I didn’t go to my doc and say all my troubles are due to fin, but rather let him play the detective (but I do pull the strings somewhat).
I am not located near Stockholm, more south in Smålands biggest city.
Hello,
What symptoms are returning to normal?
Like you, my symptoms are sexual and emotional.
I hope you will feel better. I am confident, I read your story and things seem to be getting better and better with time.
My erections and sperm seems to be the things that have improved the most.
Sleep is much better although not as good as before PFS.
Also I had post pee dribble but it’s more or less gone to.
Genital sensitivity is the thing that have actually gotten worse with time. Mentally I am ok, not great, but pretty stable.
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Do you know any Swedish doctors who have any idea about PFS?
Thord Rosén, based in Gothenburg.
I’ve realized I have pain around where my penis attach to the body, if pressing gently it’s quite hurtful but it doesn’t hurt much otherwise. Feels like a mild inflammation.
My erectile angle is much higher than before PFS and I wonder if this is related?
Might be the symphysis pubis that is affected, maybe. Next time I visit a doc I’ll take it up.
Anyone else felt the same?
Got the results of my pelvic MRI today. Apparently they couldn’t see any damage at all, even though my sensitivity is at an all time low.
Edit: Don’t know if I feel good or bad about that.
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After taking some break from working out I started to go to the gym again. My body composition continue to decline so I felt I needed to do something.
First time lifting weights I felt sick after, got an intense headache and needed to go to bed at 4 PM. Also this workout gave me the worst case of DOMS I’ve ever had.
After that I went a couple of more times but without the ill effect. It seems I can now get some normal DOMS, but the pump and mind-muscle connection is still missing.
Cardio is still being incredibly helpful to clear my mind. Also I’ve noticed after cardio my visual snow is a little better.
My case really accelerated for the worse after using daily cialis. It gave me tachycardia and increased my blood pressure, which seems contradictive. It went from 110/60 to 130/70 while using. Now it’s down to 120/65.
At least my lower back pain is fixed after getting a medicine ball and doing daily core workouts.
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Self-reporting form
- Name of the therapy/substance: Nystatin topical cream
- Dosage: 100 000 IE/g
- How often you took it: Twice daily (per instructions)
- Status
- Still using [ ]
- Stopped with no lasting change to initial symptoms [ ]
- Stopped with persistent change to symptoms [X]
- Duration of use: Days [7] 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 [ ]
- Greatly worsened [X]
- 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 [ ]
- Greatly worsened [X]
I have some kind of rash on the head of my penis and decided to try the an antifungal cream with Nystatin, as Nystatin is considered “safe” here on the forum. It kind of looked like a fungal infection and also felt like it (burning, itching).
I did not have a good reaction to it and the skin on my penis is far worse off than it was before use. I only used it for 7 days as the leaflet said if it didn’t get better within this timespan you should stop it. Sensitivity is even lower and the skin on the penis head changed texture. I don’t think Nystatin is safe at all for us. Do not use unless utterly necessary.
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