Finally got some progress via clomid/daily cialis/PRP/shockwave therapy

[Sweetlou]

Update:

Got some unfortunate news in the way of progress. It has now been 16 days since the PRP/shockwave treatments and it seems as though the affects of the procedures is wearing off.

After the procedure I had rock hard erections and my pelvic floor felt normal again for about 2 weeks, with normal ejaculations, but alas, my erections are now back to 85 percent or so, and ejaculations are dribbling out again. My flacid hang however has stayed good, but this has been the norm for me this last year.

My hypothesis is that the hormonal/neural component of this disease couldn’t keep up with the healing process and brought me back to where I was before. It’s like there is an inflammatory response preventing our systems from being healed. If our problems were only from a pelvic floor / muscular problem, I think it would be able to be solved through continual shockwave treatments / pelvic floor treatments until the body healed itself, but that doesn’t seem to be the case.

At this point, I’m not sure if I wanna invest thousands of dollars into this just to get the same result again. I wanna believe this could have been a potential cure but it seems there is a negative feedback loop that would prevent this from being successful long term.

It’s dissapointing indeed, but this won’t stop me from persevering. In case anyone was wondering, my original username on this forum was “louidoui,” but I lost my login info for that account. I saw my name mentioned in another post asking if I was cured, so I thought I’d clarify that I’m still kicking and searching for a cure.

[pete]

Thank you for reporting on your results. I’m sorry to hear what happened to you. Your experience of ‘some improvements’ followed by a return to baseline is a common theme.

Please can you take the user survey? You just need to click the bar graph in the top right. Your response will take a little while - but you will be helping the community here, big time. We have interest in the data and hope to share developments soon.

[Sweetlou]

Most definitely will do that. Another quick update for you guys:

It was my friends b day yesterday and we went out and got quite drunk, and last night I functioned absolutely perfect sexually. Not only that, but I woke up with a raging hard on. Why is this? This has been a common theme for me this last year. Every time I get super drunk, I function way better than when I’m sober.

[arkaeik]

The reason could be that ethanol decreases androgen receptors, it seems like many people get improvement from substances with this effect.

[Sweetlou]

Interesting, so why would this help? Is it under the assumption that our bodies have an inflamed response to our androgen receptors? It’s super weird because in any normal body, alcohol shuts down the function of the penis while drunk. Most of my friends say even after 4 or 5 beers they can’t function at all. For me, even if I was to drink 12 beers I function amazing, and have a raging sex drive too.

[arkaeik]

My theory is that our androgen system works in the opposite way of healthy people. Our ARs are severely overexpressed so antiandrogenic action, which in a healthy person would reduce androgenic functions, will give us improvement. Also I would guess that if your friends took steroids they would get increased sexual function, whilst most people with PFS are insensitive or even get worse with steroids. Personally my only window was caused by a high dose of HCG, and later I read that HCG temporarily decreases AR expression.

[Sweetlou]

Interesting, that makes sense to me. What is your reaction to testosterone? I have gone on and off trt about 4 times in the last few years. Interestingly enough, when I did EOD sub q injections, I felt cured for a week. Sexually I was on fire, raging libido, everything. Then after the first week it was like a light switch turned off, and it all went to shit. My dick became completely useless. However I got all the other benefits from Test. Just ruined me sexually

[arkaeik]

Wow interesting that you were cured for a week. I’ve also taken test various times, it didn’t do anything sexually but it seems like I was starting to gain weight and strength etc. But I’ve had a similar experience to yours, I once took a high dose of proviron and for one day my genitals looked normal, then the effect disappeared. When I tried proviron again nothing happened.

[Sweetlou]

Hey no way I had a similar reaction to proviron as well. First time I took it I got raging sex drive and erections for like a day or two then the affects disappeared so I stopped taking it. It’s like our bodies develop a tolerance to medication instantly. I just wish there was some way to build consistency. I’ve been “cured” for a week at a time probably 50 different times in the last 3-4 years. Why our bodies can’t hold onto recovery is the biggest mystery. Our immune systems must be compromised, but how and why is the question.

[arkaeik]

Exactly it’s the fact that it’s so inconsistent that makes this condition unexplainable and frustrating. How is it possible that you take proviron, improve, stop taking it and go back to the previous state, and then take it again and nothing happens? Something must have changed in the body if it no longer responds, and yet this change seems invisible. It’s a shame that there’s essentially no research on this condition because there’s very little financial incentive, I’m sure we would learn about incredible mechanisms which could be applied to many other contexts in biology. Tbh I’m surprised that there’s barely any interest.

[Sweetlou]

100 percent. I first posted on this forum like 8-9 years ago and it seems like in all that time there has been little to no progress made in the way of a potential cure. Of course I don’t know what goes on behind the scenes, so I could be wrong.

What I find funny is the drug companies are investing so much money and time into creating these horrible drugs but they don’t have any time to come up with an antidote medication for the side affects. Why?

I’d like to think there would have to be some scientist in a lab somewhere who knows how to cure this. There has to be an antidote. Why don’t they invest time and money into creating that? You could argue that doesn’t make them as much money and they don’t want us to know blah blah blah, but at the end of the day it’s all about money, and Surely there’s big money to be made in an antidote medication. Anyone on this forum would give up every penny they have to their name to be healed

[arkaeik]

Wow 8-9 years is a lot. I’ve had this for slightly more than a year. Yes progress seems to be slow. Recently PSSD was acknowledged as a medical condition which I believe is significant, even though it doesn’t seem like this has changed anything. But it probably has, just that the process is very slow.

I think it’s all about profit. The people at the top are inevitably psychopaths because psychopathy enables people to completely disregard others’ suffering and this is necessary in order to maximize profit. If they released an antidote then they would be forced to admit that the drug can cause permanent side effects. And then they would probably not be able to sell the drug anymore, and in addition they would have to pay compensation to all of the people affected. Whilst if they remain silent they can sell antiandrogenic drugs for 10-20 more years, then release the antidote. Merck’s scientists probably know how to cure PFS, they’ve probably been studying finasteride’s mechanisms since it was released. Also I believe the first study reporting PSSD was released in 1999. So that’s at least 20 years since scientists have known about PSSD. What I find ridiculous is that even now that the authorities acknowledge PSSD as a medical condition they seem to be ignoring it. They announce “antidepressants can cause permanent side effects” but then nothing happens, they don’t announce any plan to do something about it. How is this even possible?

[Sweetlou]

I know man it’s absolutely sickening. It’s frustrating that we are forced to try and figure this out on our own. We’ve become our own test dummies, fiddling around with different drugs and treatments hoping something will work. I don’t mind trying different things out, it just sucks to have to take the financial hit to do it.

Seeing as I initially got very good results from the prp/shockwave treatment, I think I’m gonna opt for 10-12 treatments. Once weekly. I’m hoping that maybe this will encourage long term healing. Of course there’s stil something going on with our brains and hormonal system, but my thoughts are that if you can at least fix the plumbing issues, then that’s one piece of the puzzle eliminated, and then can focus on a treatment for the brain and rest of the body.

I’m positive there’s a physical issue because of the tissue changes that happens to many of us. Who knows what it looks like in the inside. There has to be some scar tissue/ not to mention muscular pelvic issues going on at the very least. One thing at a time.

[dae1]

Any updates?

[Sweetlou]

Yeah for sure, I’m just finally getting over the damage that I caused by using a vacuum device incorrectly after the procedure. Be SUPER CAREFUL if you decide to use such a device. It took me about 3-4 weeks to heal after I pumped at too high of a pressure. I lost all sensitivity, and I was basically completely impotent. Like worse than then I crashed. It was scary. I took a 2 week break and just healed up about 3-4 days ago.

Anyway, I’m at 6 1/2 weeks after I had the procedure done, and I’ve noticed a few things. Keep in mind I’m currently taking 5 mg daily cialis. Before I had the procedure, the daily pill didn’t have much of an affect most of the time. It only worked half the time. However now, it’s much more effective.

1. My flacid and erect size are back to what they were pre crash. This is most likely from the P shot more so than the single gainswave treatment. I still have the curvature and the tissue still looks a bit different than it did before, however, it looks much healthier overall and feels normal again. Hard flacid has minimized a lot. It doesn’t flare up near as much. I usually only notice it in the shower but otherwise good to go. The doctor said you can notice affects all the way up to 12 weeks so it’s possible I’ll see more improvement In this area. Although I’m quite happy with the results so far.

2. Erectile quality is quite improved with the daily cialis pill. As I said before, I took the daily cialis pill before the treatment and most of the time it didn’t do much. I just took it to promote any extra blood flow. Now; I notice the affects within an hour of taking it. Erections are more responsive, and the size feels normal again. If I was to give it a rating I would say I’m at 85-90 percent in the sexual department with the use of daily cialis. I use to hate the idea of taking a pill every day but it doesn’t bother me anymore.

Two things that are still not right with me are sensitivity and morning erections. As far as sensitivity, I still have too much sensitivity. I have had PE ever since I crashed and nothing has been able to help that in all these years. The only way I have managed normal timing is when I’m drunk. So every sexual encounter I’ve had has been when I was wasted. Surprisingly I’ve never had an issue performing when I was drunk. I notice depending on the position I’m in, it has a direct affect on how long I can last, so I’m positive the pelvic floor issues are contributing to the PE issue.

Morning erections are still basically non existent which is weird because of the improvements I have been experiencing during the day. This could be a sleep related issue, or the hormonal side of things though.

One thing I will note is this: I decided because I’m spending all the money on these treatments I owe it to myself to put my best foot forward. I decided to give up alcohol completely 2 weeks ago, so as far as PE and morning erections are concerned, this could very well be related to my neurotransmitters in my brain being exhausted and screwed up from that too. It’s no surprise the affect alcohol has on the brain and body, and I would be lying if I said I wasn’t drinking too much this last few years. I used it as a coping mechanism to deal with all this. Anyway; I’ll have to see what happens over the next few months after my brain has time to rest and normalize from the the alcohol use. I’m curious to see if these results will get better and stay with me long term.

I’m also going in for 8 weeks of gainswave treatments starting on January 6, so I’ll definitely update more on that as I get those done. I only had the one gainswave along with my P shot the first time, so this will Be my first time adding in the weekly gainswave treatments. Because the gainswave treats the penis and pelvic floor, I’m hoping that this will help me out in the PE department as I still believe our pelvic floor issues are partially responsible for the PE.

That’s it for now, I’ll keep posting after I get Loren gainswave treatments done, and hopefully these improvements will continue to get better and stay for the long term

[sikllindil]

Hello sweetloo,

I would like to report exactly the same than you did.

The only one way I got my sex drive back is to drink a lot for at least 2, 3 days and then, the sex drive pop-up generally 5 to 7 hours after starting drinking. And then it will last 2-3 hours before stopping.

If you drink to much alcohool im a few days in a row i think there is an hormon issue setting up (oestrogene synthetised) from ethanol transformation chain become too high.

I also like you stopped drinking for a few months now, and i can tell you that nothing will happens (didnt drink a glass of alcohol for the last 3 months and libido doesnt come back by itself).

I get the feeling this is related with brain, dopamin, etc…

Beside that, when i am taking supplement which increase DHT / testo a lot, i will also feel increase of sex drive and then it will come back to 0.
If we do a break for 2,3 weeks and start again, we may notice some sex drive again. (Butea superba or tribulus with a high amount of saponine) brings me those good effects. Of course by doing so for a few months i lost a lot of hairs, they became thinner.

So i think we have exactly the same body reaction.

[Sweetlou]

Thanks for the detailed response brother, I do believe your right. Sounds like we’re on the same page for sure. I also think it must be brain related.

When I went on trt, it cured me me for about 2 weeks, then I went downhill right after. I was reading a thread where a Doctor was talking about how when you start trt, you get a flood of neurotransmitters in your brain initially for the first couple weeks then it normalized as your body adjusts.

That made perfect sense to me why I experience such a high period for those two weeks, but since it dropped off and my symptoms got worse, I don’t think trt is an sort of solution for me. My testicles are hard and full.

My question is, how long have you abstained from alcohol? Did you go longer than 3 months? And have you tried incorporating a workout regime along side?

I hate to say it but I loath the gym more than anything, but my thoughts are that if you abstain from alcohol for a period of a year or 2 if possible, ( maybe our brains need that much time to repair ) and incorporate a steady workout routine, maybe that would do the trick. In all these years, I’ve never stuck to a gym routine for more than a few months and the longest I went without alcohol was 9-10 months.

[sikllindil]

I am working out for 10 years now, but gently like one to 2 times a weeks.
I generally run at least one time a week (sometime 2), and do one work-out session 1 time every week.

I am doing kind of keto diet and will do a treatment to kill pathogen bacteria next month using natural agent. I did the GENOVA CDSA Stool tests and it showed up clearly pathogen bacteria problem.

Because pathogen bacteria eats sugars I avoid carbs.
I will also try to go 3 times a week to the gym from now on just to improve my immune system during my treatment.

I don’t think just stop drinking alcohol for a long time will do anything except avoid inflammation in our intestine (which is part of the solution I believe) and help to repair.

I have pfs for now 11 years maybe and at the beginning I didnt drink much and sex drive what lowest than 0.

When you do TRT I believe you stop producing your own testosterone afterwards? be careful with it, I understood that when you start you should never stop or maybe you need some medication to have your testicle reworking normally.

I have heard a guy who did TRT and got back is sex drive back permanently but he plan to do the TRT all his life.

I am surprised it worked only 2 weeks for you. Maybe this is normal at the beginning the time for your body to get used to it.

[Sweetlou]

I’m pretty sure it was the rush of dopamine or other neurotransmitters that gave me the initial benefit from trt. EIther that or: The extra test I was putting into my body was bringing my androgen levels up to over the max limit, so I was getting the added benefits that come with high androgen levels.

After 2 weeks your body starts to shut down so my levels may have fallen back down at that point, and that may have caused the downfall also. The problem is it’s very hard to keep high levels on trt without getting side affects. So trt is not a solution for me. I ran clomid afterwards and recovered my natural levels. I have tested them and they’re fine. My testicles are very full also so I know I have zero issues with testosterone.

Converting to DHT could stil be a problem though. At the end of the day, who really knows. What I do know is, having to manipulate hormones for the rest of your life isn’t a cure and I don’t Wanna go down that road anymore.

[sikllindil]

My DHT level is in the middle range according to result.

There were one BodyBuilder who proved that DHT is not necessary for sex-drive.
Indeed, this guy bring his DHT to 0, and keep a high testo level, and keep having sex-drive and so on.
He talk about it in podcast: https://podcasts.google.com/?feed=aHR0cHM6Ly9tb3JlcGxhdGVzbW9yZWRhdGVzLmNvbS9mZWVkL3BvZGNhc3Q&episode=aHR0cHM6Ly9tb3JlcGxhdGVzbW9yZWRhdGVzLmNvbS8_cD04MDgy&hl=en&ved=2ahUKEwirpraJwbXlAhUBW60KHWnCCrQQjrkEegQIABAE&ep=6&at=1571941149809

Recently I also come to knew a PFS guy who is pretty much back to normal according to him, following kind of mix of all protocols I have seen so far: low carb diet, water and fruit feast, a lot of sports, lot of supplements, cold shower/swimming in cold sea. He said his DHT level is 3 times the upper level now. According to him he is pretty back to normal after 7 months. (sex drive included).