Please can I have some guidance/advice from more informed people?

[Esperance]

Hi everyone,

I just stumbled onto this site today, and had quite a freak out, as I’m sure many people have had before and posted something similar to this in that they’re asking for your help in identifying their symptoms.

Before I start though I see that you have a survey for symptoms, but I just wanted to get your opinions first and if you think it is PFS related I will fill it out. I must say too that I’m impressed with the level of community and organisation you have here in the face of such a terrible illness.

Now a bit about me:

I took finasteride in March 2015 at 23yo, along with saw palmetto. I took them both for about a week, maybe a little bit longer, I honestly can’t remember the exact length of time or dosage. I did experience a small amount of breast pain while taking them, however I stopped predominantly because of all the horror stories I was reading online about sexual side effects. I have always been an anxious person and my anxiety wasn’t willing to risk it. Had I known it could cause all the other symptoms everyone here has faced I absolutely wouldn’t have taken it in the first place. I particularly wasn’t willing to risk the erectile dysfunction from it at the time because I had had issues with that in the past when I was a teenager, but that was purely anxiety driven, I wasn’t taking any medication at all, it was simply that I would get so anxious about being not very good in bed that I wouldn’t be able to get it up. Once I learned to control my anxiety better, and also once I started to have long term partners it wasn’t an issue at all, and I have had full erections pretty well every time right up until this day.

Now the reason my story is a bit convoluted and confusing is that after I stopped finasteride I didn’t have any sexual side effects whatsoever. I actually didn’t have any negative effects at all for 1.5 more years, and I didn’t give finasteride much thought again at all until today.

If you’re now wondering why the hell I’m even writing this I hear you, however in early 2017 I experienced the most rapid and worst cognitive and mental experience of my life. I ticked every single box for what I now see are the neurological effects of PFS, I was cognitively destroyed, constantly brain fogged, couldn’t string sentences together properly, outrageously anxious and depressed, and the worst of all I was paradoxically completely emotionless throughout it all. I also experience debilitating gastrointestinal symptoms, as well as joint pain, tinnitus etc. For a long time I was at a loss as to why this happened at all, I mean I was smoking a bit too much weed at the time and kind of put it down to a bad reaction to weed, but then I came across a bluelight forum on MDMA long term comedowns (LTC). Like this site it identified a wide range of symptoms that a small subset of people who take MDMA (but still thousands of people) can experience for years after even just one dose of MDMA. I had taken MDMA for the first time of my life just weeks before everything started for me in early 2017. It was the mystery diagnosis I’d been looking for, and all my symptoms were covered under the LTC. Although there was no cure apart from time (if you’re lucky) and living as much of a stress free lifestyle as possible, I was relieved to have some answers. I committed then and there to a life of complete dedication to my health and did every practice and supplement under the sun to get better, along with complete abstinence from all drugs and alcohol.

My cognitive symptoms have greatly improved since this time, and my depression has gone, however I still have the same complete emotional blunting (anhedonia) and my anxiety is for the most part always there. My tinnitus, joint and gut issues are too. I have been meditating every day and have always retained hope that I will be completely cured one day. However today I found myself looking into Milk Thistle for some raised liver enzymes that I have, and I came across this website and a thread about people who have PFS and have had bad reactions to Milk Thistle. I had taken Milk Thistle in late 2017 and I don’t think it exacerbated my symptoms, but once I found out your site is about finasteride sufferers I began reading more and more threads. Which caused me to get more and more concerned as all my neurological and physical, persisting or otherwise, matched what is possible for PFS. However I have never had any sexual side effects since I took finasteride, apart from a loss of pleasure in sex, but I have a loss of pleasure in literally everything so it’s nothing to do with the sex itself.

Which leads me to my question, do any of you think that it’s possible for someone to get PFS without ever having any sexual side effects? Also with such a latency of onset of symptoms? Or am I better off just focusing on the more likely MDMA damage in my case? My biggest fear right now is having two dire causes for my current condition, and having to research both of them separately. It’s been a nightmare, as you all would understand, trying to completely understand one understudied condition, I can’t even imagine trying to understand a whole extra condition just in case it’s that instead!

If you could enlighten me I would be extremely grateful.

Thank you!

[Wintermoon]

I don’t think symptoms generally show up THAT late. If I were you I’d try to stop worrying about it so much.
Usually they occur within a few days or weeks after quitting Fin. There are some cases where things worsen over time though. Although it’s hard to pinpoint whether that’s a general rule for everyone, because some people slowly recover over time.

First of all your story is a bit hard to make sense out of. Do you or do you not have sexual side effects right now?
Because if you can get your dick hard… then go fuck someone. Seriously. What the fuck are you doing here?

So far, I have never heard of anyone with PFS who didn’t have sexual side effects. I don’t want to invalidate or downplay any of the things you go through but as far as I can tell from your story you worry and obsess over this a LOT by jumping into one forum after the other trying to find the one thing that is the root of your issues. That alone I think worsens your anxiety.

If you don’t have erection problems or lack of morning wood I honestly don’t feel you should worry too much. I know anxiety and depression are awful because I have first hand experience with those but they can be treated or alleviated with therapy. Even if they are truly and undeniably of a physical origin, therapy might still help.
I don’t know much about brain fog because I have little to no experience with those.

If you think your symptoms are caused by MDMA or by smoking marijuana well, then just fucking don’t.
I’d certainly avoid any kind of mental or hormone-influencing medicine or drug if I were a sensitive anxious person. (which I am so I can relate)

Continue a healthy lifestyle. Eat varied and balanced and exercise. Try to focus your attention on fun and interesting things. Get therapy.

[Tzinkman]

Hi @Esperance and welcome to our community. Thank you for taking the time to explain what has happened to you.

@Esperance

do any of you think that it’s possible for someone to get PFS without ever having any sexual side effects?

There are a number of PFS patients without any sexual side effects. The symptoms of PFS are wide ranging both in number and severity between patients. Some gain weight drastically while others lose weight irrespective of caloric intake. Some experience debilitating neurological effects while others “only” have sexual dysfunction. I recall from my time on a hair loss forum (prior to developing PFS) two guys who had used Finasteride (for how long I don’t know), ceased use of the drug and then developed a singular problem; one had tinnitus, the other an intensely itchy scalp, both persistently (they said these problems were not there before their use of the drug). They had no other symptoms and from what I remember, didn’t even refer to themselves as having PFS - they just periodically posted in Finasteride threads that that was their experience and they no longer use the drug. They probably thought they didn’t have whatever PFS was as they didn’t have sexual symptoms and this disease is frequently mischaracterised as predominantly sexual in nature.

@Esperance

Also with such a latency of onset of symptoms?

The leading hypothesis regarding the etiology of PFS is that in a minority of people, drugs with an antiandrogenic action (Finasteride, Isotretinoin, SSRIs, Saw Palmetto to name a few) can cause epigenetic changes within the body which can then cause massive and deleterious dysfunction within the individual, often across multiple domains. It is observed in several members here that they used one of the aforementioned drugs for a period, stopped using the drug and experienced none or mild/singular symptoms afterwards. Upon re-exposure to the same drug or another antiandrogenic substance, sometimes years later, they then rapidly develop much more severe problems, often from a single dose of whatever drug they took.

Your story fits this pattern. According to this study where rats were given MDMA

The Recreational Drug Ecstasy Disrupts the Hypothalamic-Pituitary-Gonadal...

We quantified hypothalamic GnRH mRNA, serum luteinizing hormone (LH) concentrations, and serum testosterone levels, as indices of hypothalamic, pituitary, and gonadal functions, respectively. The results indicate that the hypothalamic and gonadal levels of the HPG axis are significantly altered by MDMA, with GnRH mRNA and serum testosterone levels suppressed in rats administered MDMA compared to saline. Furthermore, our finding that hypothalamic GnRH mRNA levels are suppressed in the context of low testosterone concentrations suggests that the central GnRH neurosecretory system may be a primary target of inhibitory regulation by MDMA usage.

Cannabis also has effects on endocrine function

The weed connection

Cannabis is chock-full of beta-sitosterol, the active compound in saw palmetto, and a 5-alpha-reductase inhibitor. CBD (cannabidiol) also has affinity for certain estrogen receptors. This was discussed between me and another sufferer of PFS-like symptoms who noticed a severe worsening of symptoms after vaporizing cannabis, followed by a brief period of partial recovery for a couple days after. Not sure if it’s a good idea, but it seems to be working for him. It’s worth noting the OP in that p…

I seem to have gotten PFS from excessive marijuana use 5 years ago at the age of 17

Hi @Cherry, I’m sorry to hear you’re suffering, and welcome to the forum. We see the syndrome caused by many substances with the ability to sharply lower the availability of ligand to, or inhibit, the androgen receptor. Scientific research has shown cannabis may lower testosterone and can inhibit DHT forming a complex with the receptor. Marijuana has been seen across the years to modulate PFS symptoms, providing relief to some and causing others to crash, which is common to antiandrogen usage i…

I’m sorry if this isn’t the answer you wanted to hear. Everyone here understands the horror of having a condition which isn’t sufficiently elucidated so you are among kindred people, if that can be of some comfort.

@Esperance

I must say too that I’m impressed with the level of community and organisation you have here in the face of such a terrible illness.

Thank you for the kind words, they are appreciated. The community and staff here have really generated some momentum for this issue in recent years and it’s nice to see that it’s showing through.

[Tzinkman]

@Wintermoon

Because if you can get your dick hard… then go fuck someone. Seriously. What the fuck are you doing here?

So far, I have never heard of anyone with PFS who didn’t have sexual side effects.

Please see my post above. I’m not criticising you here as it is a common misconception that PFS has to include sexual dysfunction of some kind but please bear it in mind for future posting that some patients have no sexual dysfunction but very serious other problems from Finasteride.

[Wintermoon]

Sorry.

[Esperance]

Thank you for both of your replies, even though they’re both quite disparate haha.

Unfortunately my computer has just died and in the current social isolation climate it’s a bit difficult to get it fixed/get a new one. So I’m replying on my phone and it won’t let me view your replies at the same time as write this message, so I’m just going off what I remember of each of them.

Mainly I just wanted to say I appreciate the time each of you took to give your advice.

@Wintermoon I get where you’re coming from, and I understand it must be frustrating for someone without sexual problems coming on here and asking for help, but I can assure you I would trade all my neurological symptoms in a heartbeat for some sexual ones. I know the grass is always greener though right. But I can say for those with both anhedonia/emotional blunting and sexual symptoms and are trying to fix sexual symptoms first, there’s very little point in being able to have sex if you don’t have the ability to enjoy it, or anything else for that matter. Trust me I’ve had quite a lot of sex in the past few years, and without being able to connect to it emotionally it’s not really worth it. In my opinion, and this is just my own and is obviously due to my experience, anhedonia is the worst symptom I can think of.

And yes obviously I don’t smoke any weed or do MDMA (only done once in my life) at all anymore, haven’t for over 3 years. I have dedicated my life to my health, as have many of you here, so I know how painful it is to do so and still to not be anywhere near where you’d like to be.

@Tzinkman thank you for your both informative and considerate post. I think you’ve connected quite a few dots for me, and I agree after following your links and also spending quite a bit of time on this website over the past few days that I have some form of PFS that occurred much later than is usual due to the re aggravation from MDMA and possibly also marijuana. I will be sure to ask on the MDMA LTC recovery forum if anyone has taken Finasteride in the past and if anyone has a similar timeline to me.

As to where to go from here for me, as far as I can tell from reading through this site, especially the success stories, that there are multiple different modes of recovery. The common denominators are mostly time, healthy eating (paleo, keto, fasting), exercise and reducing stress (meditation etc), particularly by not thinking about the problem. From what I understand of epigenetics these are all things that are meant to positively effect genes. Funnily enough all these things are the same common denominators for the people who have been cured on the MDMA forum. Mainly it seems to be a lot of time in combination with a healthy physical and mental lifestyle. No magic bullet supplements etc.

So in light of all this I’m going to refrain from too much more digging on this site. I will visit from time to time to see if somehow someone does come up with a cure that works for everybody, and I will do the same for the MDMA site (infrequent visits).

I will fill out the survey quickly before I go today though, to help out the excellent work of this site.

Thanks again for your advice above both of you!

[Esperance]

Hmm it doesn’t look like the survey will work on my phone, I might have to do it once I get my computer fixed after all this virus mayhem passes!