nate99's story

Member Stories
#1

I don’t know how or why this is the case but i think rogaine foam might be the cause of my persistent after fin/dut sides

started fin when back in 2002, when on and off a few times, made a complete recovery every time

started using just dutasteride in 2006, for about 2+ years or so.

Quit cold turkey summer of 2009, and my libido has not recovered ever since. Other symptoms have all improved, i had a massive amount of weight loss, more energy in the gym, can think clearer, and generally feel better. When i quit, i added azaleic acid cream, a laser helmet, and rogaine foam to my hairloss regimen, feeling that none of these would give me sides, and although hairloss is not the most important thing in the world, i figured i might as well do something to slow it down as long as it caused me no side effects

well, my sexual sides have been persistent. it doesn’t sound as bad as some of the stories here, but my libido is definitely low, no morning wood, feels like there is not a lot of blood flowing down there etc.

Well anyway, several months ago i reasoned that the azaleic acid must be giving me sides still, because i quit a year and a half ago. i dropped it, but still had an up and down libido. For the last month i had been keeping a journal of side effects, when i exercised, what i ate, drank, etc. to figure out what could be the factor that seems to be causing me sides. What I think i have found is the day after i use the rogaine foam, i always have lowered libido, even more so than usual. And i feel best after multiple days of no foam.

To test this, for the last 5 days i hadn’t touched my rogaine foam and I applied some azaleic acid cream to my scalp a couple of times. i felt really good, had morning wood again, and in general felt really good. Something that i also really noticed was my scalp was itchy and hair started falling out more, i felt like my hair lost a LOT of density in just the last week. Also, I’m having a mini acne break out. Just to test it out, I applied some foam last night. Today, I had no morning wood, and the feeling of “fullness” is kind of gone downstairs. Just last night, I was having spontaneous erections that were pretty strong.

So my conclusion, while I have not yet made a full recovery, is that the rogaine foam was somehow giving me persistent side effects, but not as severe as the ones I got from dutasteride. I don’t know much about rogaine foam. I know at only 5% it is not that powerful, and I don’t use very much at all. I remember making a complete recovery from fin while using Dr. Lee’s 5% and 15% xandrox many years ago. What could be so different about the foam?

If some of you don’t believe me or think I am mistaken in some way, that is fine. I don’t claim to know why this is the case, all i noticed was time periods when i stayed away from the foam, are the times I felt the best. So i recommend if you are still using foam or minoxidil, try going off of it for like 2 weeks and see how you feel.

For me, I am a little worried about what to do next. I already made the decision a year and a half ago to stop being chained to a drug. But now that it is time to drop the foam, i do feel scared again at how much my hair will fall out. I feel it is really embarrassing to face people, and rapidly lose hair. It would be nice if this hairloss was spread out over like five years, but i feel scared that five months down the line I will have nothing and my friends and coworkers will really notice. I know my health is more important, but still it sucks.

Thanks for listening

1 Like
#2

Get a pair of clippers and buzz it down to the scalp, problem solved.

#3

Minoxidil has never been documented to cause persistent side effects. Finasteride and Dutasteride are known to cause this issue in a subset of men.

And there you go, there’s the source of your problems – dutasteride.

These are all documented effects from 5AR inhibitors. Yet you are looking to blame “Rogaine Foam” instead. Why?

Nonsense. Azaleic acid was never a source of your issues, dutasteride was/is.

But you really haven’t found anything, since Minoxidil isn’t documented or cause such issues due to the very nature of its mechanisms of action. What you are experiencing is therefore likely psychological/placebo.

Confirms your issues are not due to alzeic acid.

All of a sudden you are getting morning wood? You just said a few statements back you haven’t had any since dutasteride use.

Again, back to not having morning wood, yet now you are getting spontaneous erections? So your issues aren’t persistent now? Your story is all over the map.

Minoxidil’s mechanism of action is completely different than Finasteride, it acts as a vasodilator. If anything it should help with erectile function.

ncbi.nlm.nih.gov/pubmed/1905361

Your belief and resultant claims are completely misguided, and unfounded.

Nothing, it’s 99.9% not the source of your issues for reasons stated above.

Dutasteride on the other hand, is 99.9% likely the source of your problems as 5AR inhibitors are documented to adversely affect sexual function, and as you know, can lead to persistent side effects in some individuals.

Not to be an ass but these types of concerns are pretty petty, compared to the health situation many have been left with since taking 5AR inhibitors. If you are concerned about your hairloss and looking for other treatments that do not involve these medications, please post such concerns on hairloss forums.

#4

Wow, Mew, I know you are the moderator here, and I respect that. But I think you should be a little more welcoming.

Yes, I said I am bummed about hairloss. I didn’t talk that much about it, just like a couple sentences. I know this is not a hairloss board, i respect that, and just made a passing comment. For next time, i’ll think about it before i post that, but really man, what was the harm of that comment?

Next, why are you so concerned that there are no documented studies of minoxidil causing side effects?

Isn’t the point of this entire website is to gather a community of men being affected by finasteride side effects that are persistent after usage, a phenomenon that ALSO is not really documented or at least not well documented by past scientific study? Don’t people on hairloss sites claim that people on this site are “crazy” because such persistent side effects are not well documented? Don’t they themselves constantly refer back to some ridiculous study claiming only 2% of men get sides on fin that always go away after discontinued usage? How is your dismissal of my idea any different than their attitudes towards this community?

My point is, saying “it’s never been documented” is clearly not the be all end all of discussion. I remember there was a guy that posted before about getting similar side effects from minoxidil, and if i remember you shut him down quite quickly and told him not to post his problems here. Couldn’t it be possible that, while not the ROOT cause of the side effects, continued usage of minoxidil could in some way cause the side effects to persist? Maybe a significant number of people here still use minoxidil thinking that it is harmless, and in some ways it continues their problems. I don’t know if that is the case, but what is the harm of just posting the idea? i originally posted this in the “THEORIES” section, because it is just that.

Next, I think you read too closely into the words i put down, or maybe you are reading my story and trying too hard to find an inconsistency in it. I am not an enemy to this board. I read it quite a lot, and i think even a few times i have defended this board on hairloss sites such as HLH. I don’t really remember because i don’t post on those boards anymore, but i would defend this site to others.

I did not say or did not mean that since i started dutasteride i have NEVER had morning wood or any kind of libido EVER. I meant that when i was on dutasteride my libido and morning wood were for the most part destroyed. But i stopped it like 18 months ago. My libido rises and falls constantly but is never at 100%. I honestly would have expected a complete recovery by now because i have gone on and off fin at least 3 or 4 times and made a full recovery. So what i am trying to do is to figure out if there is anything in my daily routine that could be causing the side effects to stay around. Is there something wrong with that? While i acknowledge that dutasteride is the cause of the problems, i am open minded enough to think that there may be something i can do to help things along. Better diet, exercise, stopping products that may add to the problem, etc.

As stated earlier, i am noticing that when i stay away from rogaine foam for like a week, everything is feeling much better. That is my observation. To just tell me that that cant be the case because this study or that hasn’t shown it…well, that sounds awful familiar to me

Of course maybe i am wrong, and I will completely quit the foam and then a month later i’ll just have another crash in libido…that might happen…or maybe i’ll quit it and then make a 100% recovery…Either way, shouldn’t i post it? Or is it not ok to post anything unless it is focusing 100% on finasteride? If so, then i guess i misunderstood the point of the forum. Maybe it is just to collect data against finasteride, but i thought it was more for people dealing with persistent 5ar inhibiting side effects, whether from fin or dut, and possible ideas or theories as to how we can make a recovery. If I got it wrong, i’ll stop posting here unless I have something to say about fin. Thanks.

1 Like
#5

I just read your response again Mew, and I think it sounds as if you think I am trying hard to not blame dutasteride but instead blame rogaine foam. Let me make this clear: DUTASTERIDE screwed my libido, caused me to gain about 20 pounds, made my nipples sore every day, took away any bit of energy i had and generally made me depressed even after i stopped it. I can completely acknowledge that

The point of my post was just to investigate the possibility that there could be other factors causing these symptoms to persist 18 months later.

I also see that you think my story was “all over the map” which i think is a little unfair, and not accurate at all. Just because I get more spontaneous erections after 1 week of dropping minoxidil, it doesn’t mean that those erections are 100% hard. If i had to put a number on it, i’d still say that they are only about 60% of the hardness i used to get before starting dutasteride. But this past month they had been harder and more frequent the longer i stayed off of rogaine foam. As a result i think foam helps the sides persist. I am in no way saying, “Wow, foam was the problem all along! I’ll hop back on dutasteride now!” Dut/Fin is the root of the problem, but what’s the harm in thinking that something else might make it worse?

#6

Sorry but its just not the case Rogaine is causing any of your sides. Rogaine has no mechanism which would effect your hormones. You took a deadly cocktail of Fin and Durasteride. Plain and simple. There isnt even anechdotal evidence, save this, that Rogaine causes any of your side effects. ALOT of us who took Fin/Minox have quit them both and we are still hypogonadal. Best idea is to approach this as PFS and have blood tests and attempt treatment.

No one here cares about hair or uses Minox anymore. We all just buzz it down and pray we start to bald again normally.

#7

I appreciate your opinion, but what about this guy?

viewtopic.php?f=3&t=3813&hilit=minoxidil

In his post he clearly describes negative libido effects. In the thread there is also a doctor who is open minded to the idea and acknowledges that maybe not everything is known about how minox works.

Or how about this guy?

viewtopic.php?f=1&t=3138&hilit=minoxidil

he doesn’t specifically point the finger at minox, but he seemed to think it was worth doing a little research on. And in the thread there seemed to be speculation from other users that it could have negative effects outside of what is already acknowledged as well.

Or this guy?

viewtopic.php?f=3&t=4618&p=31207&hilit=minoxidil#p31207

He seems to think it is possible that minox could be somewhat responsible for persistent sides

I respect what you said though about no one here caring about hairloss anymore. I hope it’s an attitude I can one day adopt as well.

It seems like the case seems pretty clear cut to you guys, so I’ll just investigate this on my own. Good luck with everything

#8

Nate, I’m simply trying to help you by steering you away from red herrings. You are very, very likely barking up the wrong tree, but if you believe Rogaine foam is contributing to your issues, so be it. The fact you took both Finasteride and Dutasteride which are known to directly affect sexual function and cause the issues you aer complaining about, seems clear as day to me, yet you are looking for other scapegoats in your quest to understand why “side effets persist”. If you had never taken either Finasteride or Dutasteride but took Rogaine only, guaranteed you would not be having any issues like you describe.

Yes, exactly. Finasteride and 5AR inhibitors in general. Minoxidil is not one of these.

If you are affected by persistent side effects SINCE TAKING BOTH FINASTERIDE + DUTASTERIDE, which you already stated you have had persistent issues since Dut, then I don’t understand why you continue to argue that your persistent issues could now be due to something else. You took 5AR inhibitors which are known to cause persistent side effects, you state you have them since taking them – not sure where the big mystery is? Rogaine has nothing to do with this.

You have posted nothing scientific related to Minoxidil showing how it could even conceivably cause the issues you are describing. I have refuted this topic in the past with scientific material to do so, as noted in links you posted in your further posts.

Yes, the point of this forum is Finasteride and 5AR inhibitors – however, the root cause of the persistent issues we are experiencing is a direct result of these medications, not minoxidil. If you believe your issues are continuing to be perpetuated by Minox, well, there’s nothing we can do about that, as it’s your belief… but you haven’t provided any scientific proof to back it up.

I’m not singling you out here, but the point is, we need to stay focused on the core cause of this problem – 5AR inhibitor usage. We don’t have unlimited time or energy to chase red herrings, or argue with those that “believe” Fin or Dut didn’t cause their issues (however, you already agree your issues stem from such usage), or are the source of their persistent side effects. Therefore, where we differ is that you believe Minox is causing your issues to persist, when in fact it is more than highly likely it is the 5ARI drugs you took that caused your persistent side effects in the first place.

There simply isn’t ANY scientific evidence that Minoxidil can impart ED, loss of libido, gyno or other symptoms that Finasteride or Dutasteride does, never mind on a persistent basis – it’s impossible because it’s not a hormonal manipulator, it’s a vasodilator (increases blood flow).

Again, you are free to believe whatever you like, but it doesn’t change this fact. Hence, blaming Minox for persistent side effects is a futile excercise and ultimately, a red herring for you in terms of your time, energy, and resources to solve your issues that have arisen from prior 5AR inhibitor usage.

#9

Actually there is some evidence of minoxidil involved in sexual side effects from hyperprolactinaemia.

From wikipedia:

Hyperprolactinaemia may be caused by either disinhibition (e.g., compression of the pituitary stalk or reduced dopamine levels) or excess production from a prolactinoma (a pituitary gland adenoma tumour). A blood serum prolactin level of 1000–5000 mIU/L could be from either mechanism, but >5000 mIU/L is likely due to the activity of an adenoma with macroadenomas (large tumours over 10 mm diameter) whose levels of prolactin are up to 100,000 mIU/L. Hyperprolactinaemia inhibits gonadotropin-releasing hormone (GnRH) by increasing the release of dopamine from the arcuate nucleus of the hypothalamus (dopamine inhibits GnRH secretion), thus inhibiting gonadal steroidogenesis, which is the cause of many of the symptoms described below.
There is a suspicion that Minoxidil, a potassium channel agonist, may be related to the development of this disease. A two-year test with Minoxidil, under normal dosing parameters, was carried out on rats, which caused pheochromocytomas in both males and females, and preputial gland adenomas in males.[2]

#10

Hello,

I have not posted in a long time. A year ago I was hoping that quitting Rogaine Foam and Azaleic Acid cream would be the end of my problems. I was completely wrong and am still suffering from side effects. Since October til now has been the toughest time for me since quitting back in the summer of 2009. It used to be very up and down for my libido, now it seems like it is almost always down

Anyhow, I recently started taking Centrum Multivitamin Specialist. I had a very temporary recovery, and I am not sure why.

When I started taking it, I did not think it would have much effect on my libido, i just figured it would be good for overall health. In fact, to this day, I cannot say for sure the multivitamin was the cause.

Two days after I started taking the twice a day Centrum, things started to feel different. My scrotum felt like thicker, or just more comfortable. I notice that when i was urinating, the stream was much more full and strong. I had a very deep and restful sleep. Then by the second or third day (not sure exactly), I just felt everything was different, I was thinking about sex a lot, and when I would think about it, I would feel the connection again to my body and penis as a whole. It was like my entire body just reset its connection. I went to exercise and I felt AMAZING. It’s like there was energy and I could feel even the tiredness more than before. It felt like my whole body was just waking up from being asleep. What’s weird is my sore right knee that had always ached after running, just didn’t feel sore at all. My penis felt fuller, and there was a warmth about it that I had not felt in a long time. The way I started to feel overall made me feel great, like it was how i felt before any of this mess started. I had a little bit of morning wood, and overall my emotions were higher. I got face burningly angry about some minor event that happened on like the 5th or 6th day after I started taking it. I felt overall happier and was optimistic that I could have a relationship. Even if my full hardness hadn’t returned to my erections, I was confident Viagra or Cialis would help, and it would be ok because full sensitivity had returned to my penis.

Unfortunately as most of these recoveries go, within about a week, it started fading. I jacked off once during that time and like water came out so my semen did not thicken up exactly.

The increased sense of overall feeling is gone, my urine stream looks like it did before and I am just overall back to a more numb feeling to life.

Somehow whatever happened, my body readjusted to what i was doing

I actually thought at first that the recovery was natural. I didn’t think at all about the multivitamin until another member i was PMing suggested it might be the cause. I researched and what I experienced seemed similar to what a lot of people say they experienced with Vitamin D, which is in the multivitamin but at a very low dose (2 tabs = 400 iu). I think there are a lot of people taking several thought iu of vitamin D a day

I’m not sure if what I experienced will help anyone, i just wanted to share it before i completely forgot what it felt like. It was disappointing to lose the recovery, but it felt GREAT for the 5 or 6 days that I felt it. It gave me hope and it was the first time in years I felt normal again. Maybe for some people it can be like a one shot temporary bullet. If anyone has any thoughts or theories as to what happened, i would love to hear.

All other things about my life style remained normal. Exercise 3 or 4 times a week. Eating generally healthy but not really avoiding many foods.

Thanks

#11

I don’t have anyone that I discuss PFS with, so I feel the need to chat about things here, I appreciate if anyone can relate to anything I’m typing about

This year, the third year since I quit dutasteride, has been the worst. After a temporary month long recovery I crashed. The up and down of the previous year has been mostly down.

I’m not sure how to describe the worst symptoms, it is either brain fog or emotional blunting. Basically, I feel like I cannot feel life anymore. smells, feelings in general, emotions, are just more dull to me in general. Even exercising and feeling tired just feel different, and not as vivid

  • feeling bloated, burping, gassy, even like 4 hours after eating something
    -loose bowel movements
    -muscle twitching, particularly right before I fall asleep
    -the soles of my feet and my palms have more of a yellowish tint to them
    -sometimes they are very cold as well
    -My right knee aches like it never used to
    -My sleep is never as deep as before
    -no matter how much I exercise I cannot lose much weight around my stomach
    -Of course there are all of the common sexual sides as well, but now my semen has a darker yellow tint to it, in addition to being watery

I saw the doctor, who checked liver, thyroid, and some other things but said that everything came back normal. My TSH was at 2.95 up from 1.15 the year before, but the doc refused to call this a hypothyroid symptom

I am starting to believe that, at least for some of us, it is a mistake to think of PFS as a disconnect between the mind and the penis, i think it is a disconnect between the mind and the entire body, but the sexual sides are what most of us are focused on

Something happened this April that I posted about, but go no responses. I started playing around with my diet a bit, tried cutting out foods i felt made me gassy. Started taking Centrum Multivitamin, and I felt an extreme recovery for like 4 days. It is hard to describe how it felt, except that everything felt more real:

-Sleep felt better

  • my knee pain completely disappeared
  • my urine flow was so smooth and fast
  • my scrotum felt more firm
  • shrinkage definitely improved
  • I could feel the connect between my penis and my brain again
  • morning wood returned (not 100%, but close)
  • exercise just felt different
  • and my mind felt the most clear it had felt in years

Then after like the 4th or 5th day, my skin and nipple started feeling itchy, things just came back down again, and it never returned to the previous levels, despite how much multivitamin I continued to take. Was it a hormonal change caused by a vitamin?

I am still not sure to this day what it was, I am guessing either vitamin D, Vitamin B 6 or 12, Iodine, or the Zinc. I will begin trying to test each vitamin individually.

My experiences this year have me feeling that at least part of my problem is in my gut. My gut almost always feels bloated and gassy, and it is possible that because of whatever issue, my body is not absorbing some vitamin or mineral properly. Simply by taking the multivitamin, I felt better than I had in years, if only for a few days. However, I have no idea though why it only worked for a few days. Maybe it’s related to a hormonal change.

But after reading that some members have improved with an anti-fungal protocol, I think that is what I will try next. I’ll probably do a fast for a few days first, then try to just eat veggies and non-red meats, some fruits, and generally cut out carbs and any glutens. I’ll also be trying probiotics and anything else to aid digestion. I’ll be looking closely into IHP’s protocol, but things like getting nystatin or armour sound complicated to me

I don’t know if Pfs is really a gut problem, leaky gut problem, or candida issue or whatever, but this protocol has found some success among members, and really, what else is there to try at this point? We can wait for the medical community to come up with something after the recent newsreports have shed some light, or we can wait until the scientific data is in from Awor’s study, but for right now, diet seems like the only thing in my full control

Can anyone relate to anything I’ve posted about? Got any opinions?

#12

Hows your recovery coming along nate?

I see that after quitting fin you started using rogaine to fight your hairloss. I too have been using rogaine since quitting (I know, I know, people are gonna crucify me for this). Curing myself from these awful side effects is my number one concern in life, but I figured if I can use the rogaine side-effect free to help my hair a little, whats the harm?

Are you still using it? Was your theory true that rogaine is slowing down your recovery from fin/dut? This is something I’ve been thinking about alot lately, I’ve been thinking of dropping it completely to see if it speeds up my sexual recovery at all.

#13

you got blood tests?

#14

Hello, I decided to check out this site again and saw Greek’s post about how people shouldn’t just disappear and I think he’s right so I will update.

I’m not totally recovered, though life in general has gotten a lot better. The low points are a little higher than they were previously. The symptoms are still there, but most days I can say that they are a little less than in previous years. My crash happened back in 2011-2012 (so long ago). Until about 2015, I can honestly say it was a nightmare moment to moment. I felt trapped in my own body, there was a clear disconnect between my mind and my body, sleep was awful, I felt pain/discomfort in the pelvic floor or prostate area constantly. Even thinking about sex would send my stomach in knots. I had no real emotions either and most of the time my dick felt completely lifeless and cold. I don’t know that I was suicidal at the time, but I wasn’t really afraid to die (i’m normally very fearful of death) and thought no matter what death is, it would be preferable to this state of torture.

Starting in maybe winter of 2015 I felt things make a turn for the better. And since then, I can say things just are overall better. There are times when i feel a recovery is just around the corner, but then there are times like recently where I feel somewhat low again. For the last week or more I’ve had trouble sleeping, a feeling that I just can’t enjoy anything, and a lack of blood flow to my penis. I’m fairly used to the cycles of symptoms I seem to be going through, and I’m sure this will pass in a few weeks or maybe even months, but I think it will. During better times, a lot more of my emotions are back (including annoyance and frustration) and I have some dreams again and occasionally even some decent sexual desire. It is only an estimate, but I would say somewhere between 10% and 20% of the year is spent being in a pretty decent state.

I’ve been hoping to hear the results of the various studies, but those seem like they have been delayed for years. What did I do as far as attempting to recover over the years? Nothing really but natural supplements, diet, and exercise. I don’t remember all of the natural supplements I took, but I didn’t think that any of them actually worked. I tried probably every diet imaginable: paleo, gluten free, anti-bad-gut-microbial diet. Dairy-free, soy-free, alcohol free, grain-free, juicing, etc. I’m not sure that any of them actually did anything, though I did probably feel better at those times, if not more hungry. Currently, I don’t follow any specific diet. The one thing I did that i thought at the time did help was I made my own milk kefir and drank it twice a day. This was all in an attempt to improve my gut health. At the time, I did feel like there was some benefits, but I only sporadically drink it now. During low times, I tend to pick it back up, and during better times I lay off. Does that mean the kefir causes the better times or lack of it causes the worse times? No idea.

What I’m really missing of course is dating, and I’m considering trying to get back in it in the near future, but i don’t feel any confidence or especially much sexual confidence, but I’m in much better emotional, mental, and sexual shape than a few years ago.

During good days, my sweaty pits and palms return, I sleep better, I’m more sleepy at the end of the day, I find things funnier and I can smell better and things taste better. When there is a song on the radio I like, i actually feel the need to sing along. My mind is just on overdrive and i remember what it is like to actually feel again.

Well, that’s about it and I hope everyone here is doing well and doesn’t lose hope. I get really nervous when I think about how long it’s been and whether I will ever be totally free, but then I think about how much worse I was like 4 years ago and I feel a little more encouraged.

4 Likes
#15

@nate99, thanks so much for updating us.

I am so glad to hear that you’re having a better time of it and though I wish that you hadn’t had those really bad years it’s a positive for many people to hear that things can get better with time, we often hear of people improving in the short term but hearing about improvements a couple of years in is good news.

Thanks again for updating us, if you haven’t already, please consider spending half an hour on our survey.

1 Like
#16

Hello Nate

I am happy that you are doing very good and you have improved over time.
Can you please tell us how did improvements come? what are the signs of improvements for you? how long did it take for you to realize that you where improving?

thank you in advance and I hope that you will be healed 100% and some more.

#17

Hi th0r_nike

Sorry for the long post, it’s just that it’s hard to describe some of these things without many sentences.

How did improvements come? No idea, but I think it was just with time. I didn’t do things like try anything hormonal or take steroids to improve. I was always afraid that those things would just make the situation worse. If there is anything I did that actually helped, then the only thing I could think of would be diet and probiotics/kefir. But honestly, maybe it was just time because I stopped those things and haven’t totally crashed back down. I also don’t want to oversell my “recovery.” I’m much better than I was before, but there are some times where I am reminded of how I’m not the person I was before in all respects. To put numbers to it, if I was a 0 of 10 when I crashed, most days now I’m around a 6 or 7.

Signs of improvement? Well, I guess it would depend on what your specific “flavor” of PFS is. I couldn’t write out all of the symptoms I experienced, but I’ll list some that were at their worse within a year of crashing:

-complete feeling of mind disconnected from the body, like a ghost trapped in a machine. this made me feel the most worried when I could actually feel worried
-couldn’t concentrate well
-dry everything, eyes, nose, mouth, pits, skin, scalp
-constant muscle twitching
-cold hands and feet that were also sweaty when they were cold
-yellowish palms (that was really scary for the first year)
-feeling of getting no sleep even after sleeping
-emotionally completely blank
-flaccid, cold penis that retreated like a turtle
-completely watery semen
-no real orgasm
-feeling of anxiety/discomfort when even thinking of sex
-total discomfort in the pelvic floor
-feeling like undigested food was just sitting in my stomach for hours
-shitting out what looks like a garden burger every day
-itchy hives like reactions whenever I would eat almost anything

That’s just off the top of my head. Signs of improvement were just all of these things improving. But if you’re asking what was the first thing I noticed, I’ll have to carefully consider that. I had had several temporary recoveries that lasted like a week before, so I know when things get better. I think the first thing I noticed was just one day, mentally, I was little more clear and my vision seemed better. Like it was subtle at first, but I did notice it. I think something was changing in the chemistry of my brain. It’s just like there was a slight breakthrough in my ability to concentrate. Vision improvement was noticeable too. When things were bad, everything looked more dull. But when seeing the same thing when i was having improvements, it’s like everything was in HD. Colors were more vivid, particularly the color of sunlight. I just remember it being more intense looking. In 2015 when i had my possible “turn around,” it was weird. I had had some serious mental OCD attacks (I have lived with OCD since a teen). While having PFS, I could never have OCD attacks. I stopped taking meds for years and just never felt them. Suddenly, I had them and I could really feel them for the first time in years. If you look through my posts, you’ll find when i was posting about them. Then I remember, I took some nyquil, woke up and I had a temporary recovery. And my scrotum and everything in the pelvic area just felt different, like something changed in it. My mind was different too. I could actually feel things again, like basic emotions. It felt like years ago, before PFS. Since that day, there have been ups and downs, but for the most part, the highs and lows have trended higher. I wanted to post here about it, but I wanted to wait until I had a full recovery or at least was sure I wouldn’t crash completely back down or until I knew that it was something I did to cause it like taking milk kefir. At that time, the culture here on this forum was very hostile. People would jump on you for anything. I once posted something like “all we can do is hope” and somebody, I don’t remember who, jumped on me and called me a damsel in distress or some shit. I get it, but it was fucking toxic to be here. So i didn’t want to post until I was sure of something. Years later, I don’t know if I’ll ever fully recover, and I don’t know if I’ll ever fully crash back down, but it’s time to update.

In more recent times, I know I’m in a period of good recovery or some good days when:

  1. My hands are sweaty
  2. I get pre-cum before I masturbate
  3. I feel horny and want to masturbate every day, like I really want sex
  4. The quality of my erections are more firm, especially the head feels more full and sensitive
  5. Penis is just way more sensitive and there is a stronger connection to my mind
  6. My scalp is itchier and oilier
  7. My mind feels more clear, like I can remember things from the past easier. Like thoughts and memories fly at you instead of having to actively recall them
  8. Along with #7, I just enjoy things more, even just staying at home and watching television, my mind like is more happy if that makes sense
  9. I’m more tired by midday and want to take a nap and by night time I’m looking forward to sleep, and they all feel good, like the endorphins are doing their job
  10. When I wake up, i feel so refreshed and my eyes are actually heavy, like i’ve actually slept
  11. when I eat, the digestion just feels different, I eat and I burp and that’s it. No regurgitation or heart burn.
  12. If i hear a song on the radio I like, I’ll have no choice but to sing along because i want to
  13. sense of smell is way better and when you smell something, it activates all of these memories of other things
  14. aerobic exercise just feels amazing
  15. I actually get really hungry and thristy

How long did it take before I realized I was improving? Crash happened around fall 2011. The timeline is a little confusing, I used to keep a journal on a google doc about it all, but haven’t check it in awhile. I felt some cognitive improvements probably by end of 2014 or summer of 2015? Not totally sure. I think the “turn around” happened December 2015. Since then, like I said, ups and downs but overall trending better. Sorry for the long post but I’ll respond to anything i can answer. But remember, I don’t have answers and I am aware at any moment I could crash back down rendering all of these thoughts meaningless

6 Likes
#18

@nate99, thanks for the update.

Yes, your description is so ridiculously apt. You sound exactly like me, and my temporary recoveries are essentially the same as the way you describe yours.

Everything feels more ‘real’ and you can think and your mind can race (who’d think that would be something one would yearn for?). You appreciate the world around you, the trees, the sunlight, the way the shadows fall on the ground, the smell of flowers, the sweet song of birds.

When in a PFS state, things just ‘are’. A tree is just a plant, sunlight is just light, song is just sound. They are just things, but they aren’t imbued with any essence which people typically take for granted.

I hope things continue to improve for you, and may you go from strength to strength.

Sometimes it feels we are so close to understanding this problem, but at other times so incredibly far.
We can recover, we have those days which are essentially normal. If only we could find a way to induce those states permanently. I understand that we first must know the mechanism underlying the condition, but I feel we are really close to it. It pains me greatly that so many good people are suffering from this condition which drains the very essence of what makes life feel alive. It angers me that progress has been so slow. But it humbles me how people on this forum and in the foundation are actually doing something.
Even though the wheels are turning slowly, we are at least moving, hopefully in the right direction.

3 Likes
#19

I took saw palmetto for 25 days or so on and off. total of 25 pills over the course of 4 months and I have had loss of morning wood numbness. well you know the story. my sides haven’t been terrible compared to some of the people in here. in January I had feeling of cold that got better et the end of February I had 1 week of raging libido I was eating food at night it was up every night buy thought. February was when my nocturnal came it was on and off some weeks I didn’t have and some weeks I head. about a month ago my symptoms improved and I thought I was recovers for 1-2 weeks but stress/no sleep/work set me back. the thing is I feel better and better but some days I feel like shit. today was one of the day and your reply was really encouraging that it will get better.
Thank you for sharing and coming back here. I wish you all and everyone here the best in life 100% recovery and good health. thank you again 13 months of living hell 25pills of saw palmetto (crushed berry)450 mg. I just wanted my hair to stop falling. I feel good and better every week and every month.
anyway thank you.

2 Likes
#20

Hello anyone keeping up with this thread, i posted this in the General but didn’t get a response, but was wanting advice as I haven’t taken any meds since dealing with PFS, ANY insight or just your opinions would really help me:

"I have a new cardiologist and he wants me to be on a low dose of beta blockers. As I understand, these can block some adrenaline receptors and can reduce the strength of the heart beat and lower blood pressure. My cardiologist told me that there is some possibility of sexual side effects for older men (I’m 37), but it doesn’t sound like it’s hormonal at all. My cousin was on beta blockers before and he told me he felt minimal sides. But maybe some people say they don’t get as excited as before because their adrenaline is lower.

I’m really wary of taking any kind of meds. A year ago I was strongly considering taking SSRI meds but decided against it as I don’t want anything that could harm my possible recovery.

I know you all aren’t doctors, but do you have any thoughts as to whether beta blockers are safe for our recoveries?

Thanks for the help"