Tragedy
Member
- Joined
- Aug 23, 2023
Hi.
I'm writing a post that I really wish someone had written many years ago so that I could have read it. It would save me from ruining (a big part of) my life.
I am going to talk about 3 (not so) rare sexual syndromes that are PERMANENT. They are either very related to each other, or the same thing with different names. Before doing so, it is necessary for me to explain in detail my background, otherwise you can't judge how legit it is what I am about to say. Please bear with me.
It seems relevant for me to write this post because ED and sexual issues are a common topic on this forum. Also this week is my 5 years anniversary of having this syndrome. No cake though.
I will divide this post into:
==========================
- In 2018, I developed this syndrome (Type #1. More on that later).
- I completed a traineeship in a psychiatric hospital for several months, conducting tests and consulting patients.
- I got my bachelor's degree with a thesis on this syndrome.
- Then, I got a master's degree in psychology & neuroscience with another thesis on these syndromes (plural). I pursued this master's degree with the intention of deepening my understanding of these syndromes.
- I had a brief traineeship using EEG on patients (recording electrical brain signals with a hat).
- I completed an internship for a few months in a neurobiology lab where I conducted data analysis on mice behavior and analyzed brain samples. Specifically, I investigated apathy-like behaviors in mice with neurodegenerative disorders and autism.
- I had a second internship in the same lab, this time studying transgenic mice with Alzheimer's.
Over the past 5 years of dealing with illness, I have taken a leading role in the Italian group of patients with these syndromes. I have personally visited labs, engaged in discussions with doctors and researchers, delivered presentations about these syndromes to psychiatrists and doctors, and formed friendships with other presidents of European and international patient associations. Some researchers studying this syndrome are also affected by it themselves. A close friend of mine, who also has the syndrome, initiated a crowdfunding campaign, through which we raised 50k that we are utilizing for cutting-edge research on these syndromes worldwide. The doctors researching this syndrome are the same ones with whom I collaborated on my MD thesis. Over these years, I have read thousands of scientific articles on these topics and neuroscience in general. For my master's thesis alone, I reviewed 250 of them.
I am very likely in the top 100 people worldwide who know most about these syndromes. It is not bragging, just the sad reality. I would give away literally everything that I own, including my underwear, not to know anything about it and not to have this syndrome, without thinking a second. But here we are.
Here's also a pic of me holding my MD thesis with these 3 syndromes (PSSD, PFS, PRSD) in the title, as a proof that I know what I am talking about.
DISCLAIMER: I am not a medical doctor, nor would I like to be one; therefore, I cannot tell you what substance to take or not to take. I am a researcher in neuroscience, so take this as a neuroscience lecture.
==================
#1 - Serotoninergic Drugs. NAME: Post SSRI Sexual Dysfunction (PSSD)
This common belief that low serotonin = depression is blue pill psychiatric bullshit. In 50 years of research, the evidence for it to be the case is close to zero. I am not saying that antidepressants cannot work. For certain people they do work, but the reason why they work is currently unknown. The most recent hypotheses say that they might work due to their activity on neurosteroid hormones. Anyway...
Antidepressants sold nowadays are mostly serotoninergic, meaning that they rise the serotonin in the brain, at least short term. Despite the name of this type1 syndrome, it is not caused just by SSRI antidepressants but by any serotoninergic drugs, e.g. SSRI, SNRI, SARI, tricyclic antidepressants, supplements like 5HTP... and also a continuous use of serotoninergic recreational drugs like MDMA and LSD might cause it too.
Antipsychotic drugs, that are not usually primarily serotoninergic, might cause it too. Though if you have psychosis you have a bigger problem to think about. The reason I am mentioning them is that doctors, against every single international guideline out there, often propose them as a quick fix for other problems, e.g. for sleeping. I myself have been proposed antipsychotics (olanzapine) for sleeping and I refused.
----
#2 - Hairloss Drugs that mess with your DHT and hormones. NAME: Post Finasteride Syndrome (PFS)
If you come from the GLL world, you have probably heard some of these terms. As a matter of fact, the first time I heard about Finasteride was a decade ago from Chris' article on hair loss. It was waaaay before me getting into this field.
Moreplatesmoredates also has a video on PFS, but I haven't watched it yet, so I can't comment on that.
Long story short, in genetically predisposed people, the hormone DHT makes hair die. Testosterone turns into DHT thanks to an enzyme called 5-alpha reductase (5-aR).
Hair loss drugs block this enzyme so that testosterone doesn't turn anymore into DHT.
The drugs that cause that are: Finasteride, Dutasteride, some supplements like Saw Palmetto, and less commonly but also possibly minoxidil. The last one is a different category of drugs, but nonetheless, I knew people who got it from minoxidil.
----
#3 - Skin Drugs that treat acne like isotretinoin. NAME: Post Accutane Syndrome (PAS), aka Post Retinoid Sexual Dysfunction (PRSD)
Retinoids are a class of drugs that treat acne and prevent scarring. According to guidelines, these drugs should be used only in severe cases, especially when taken orally rather than applied topically as a cream.
Their precise mechanism of action is still unknown, but they have effects on both hormones and the brain. Neurons have receptors for these substances, and they are influenced by them.
One of the most famous retinoids is Isotretinoin.
=======================
The most important thing you should know is that they can be permanent.
There is no way to predict who is gonna get it and who not. As a matter of fact, my sister has taken serotoninergic drugs many times without any negative effect, and my best friend has taken finasteride and saw palmetto several times without any negative effect. Nonetheless, I got the syndrome from serotoninergic drugs and another dear friend of mine got the syndrome from finasteride. He is now the president of a European recognized association of patients with post-finasteride syndrome.
These 3 syndromes are clearly related because they are too strange and similar to one another not to be related. Yet none knows what is the cause and what would be the cure. Whoever finds one, gets 200.000$ of prize the next day. Patients are collecting money both for studying the issue and to motivate researchers to study it.
Symptoms can be related to sexuality, emotions (lack of emotions, apathy, inability to feel love or joy or fear,...), cognition (brain fog, difficulty in concentrating...), physical (dry eyes, dry skin, nerve pain, genital pain...).
They can appear after months of substance use, after a single day of use, they can appear the second or third time you use the drug after a break, they can appear after you have already dismissed the drug for some weeks... it's wild.
Doctors worldwide don't know about the existence of these syndromes. When I started this journey 5 years ago, the number of doctors who knew about it was close to zero. Now there are probably 100 doctors worldwide who have heard about it, but don't expect them to know much anyway. Most of these doctors probably heard about it from either me or one of my friends from the associations (USA, Canada, UK, Germany, Italy, and Australia for sure).
There is no cure, but there are several cases of people who healed either with time or taking some substance that somehow rebalanced their system. The same substance can have a great effect, no effect, or a very negative effect on someone, so it is a lottery, often a dangerous one.
This syndrome can happen both for males and females. Many cannot stand it and take their lives. A few people who I have met in these years are not here anymore.
===================
I had already used antidepressants in the past with no side effects. I was also a very sexual guy. Super high libido, and I had never had any sexual issues in my life. Sex was the only perfect thing I had. It was amazing.
They prescribed me these antidepressants for sleep. Looking back, this prescription was against any guideline and had no scientific justification. I wasn't even depressed.
After a few days of taking these pills, my libido got canceled completely. My penis became less than one inch small and white as a piece of paper, with no blood flow. My testicles got smaller. I started having pain in my testicles and issues with my pelvic muscles. Severe ED. My orgasm got completely canceled: ejaculation (those few times I could manage to reach it) became exactly like peeing. No sensation at all. No pleasurable sensation at all. I also got genital anesthesia, meaning that if you blindfolded me and burned my penis with a lighter, I wouldn't even notice. Completely anesthetized to touch.
I got scared and I quit these pills cold turkey. For the first few months, I couldn't think. It is difficult to explain it by words, but my brain was a white screen, wouldn't produce any thought even if I tried. I would just stare at the wall the entire day and be convinced I was doomed to be retarded for life.
Every single doctor I consulted (general, psychiatrist, endocrinologist, urologist...) laughed at me and said I was just having anxiety and my side effect was not possible. This was the hardest part. I don't really know how I managed not to take my life. That's amazing to me still nowadays.
Obviously, my 5-year girlfriend with whom I was living left me some months later.
For the first entire year, I had a micro-penis, completely numbed, and I couldn't feel any emotion, nor sexual, or positive. I also didn't have any negative emotion anymore, no sadness or fear. I used to be quite an anxious guy, but overnight I became "brave" because I didn't have any fear of death.
After one year, I got some episodes of flu with high fever, and all my symptoms disappeared for 24 hours. Then I got them back but less severe. So I went from 0 functionality to 100, then back to 20 and slowly improving from there over years. Now, exactly 5 years later, I am having 40-60% functionality depending on the period. ED disappeared, and I can feel some touch again and sometimes even a feeble orgasm. Though now I tend to have premature ejaculation and pelvic contractions and pain. I have had sex a lot of times, even very nice or crazy sex, totally worth having. Nonetheless, it is not the same.
===========================
- If you took one of the substances I mentioned:
You should read this scientific study "Diagnostic criteria for enduring sexual dysfunction after treatment with antidepressants, finasteride, and isotretinoin" by Healy et al. 2022.
I know some of the doctors who published it. These are the only diagnostic criteria out there. Check the boxes and try to self-assess the situation. You should also print it and show it to doctors you will visit in the future because it is good proof you are not crazy. Nonetheless, expect a lot of denial, especially in the beginning when you are a bit naive. Here you need to be prepared and strong.
Join one of the forums (even better if you join several) about these syndromes and talk to people. Beware that the environment is toxic because most of these people are suicidal or in great pain. The most famous ones are the PSSD forum and PropeciaHelp forum.
If you live in a big western country, chances are that there might be some official association about this syndrome. Reach out to them.
Please don't take your life. I have been there and I was also very close, but many years later my life is better and I am glad I didn't. Also scientific research and AI are going fast; we might find a cure sooner than later.
Watch out because any substance, supplement, or med might make your symptoms worse. In my case, an antibiotic knocked me out for several months. Before taking anything, make some research to see what effect this substance had on other patients.
Don't freak out. Easy to say, harder to do.
- If you took a substance I didn't mention:
It is a bit trickier. It is possible that you got the same mysterious syndrome due to some med or supplement like Ashwagandha or St. John's wort or whatever. The previous advice still applies to you. Try to research to see if someone else on the forums got the same issue.
=======================
If you don't have this syndrome, congrats. You won the life lottery (at least this one). If you still have ED, chances are it is fixable with some changes. Some of the knowledge of these forums might still be useful to you. They talk a lot about science, lab tests, supplements, and so on.
Sadly, there is no way to predict who is going to get this syndrome and who is not. In my experience, I have reason to believe that if you have already used these substances in the past, you might be more likely to get it. Maybe there is some sensitization mechanism, I don't know.
If you take these substances by pills, as opposed to skin cream, the chances are way higher. It is still possible though to get it from skin absorption, but less likely.
Ask yourself why you are taking these substances, if there is any alternative thing to try.
For example, I am having hair loss and for now, I'm doing dermarolling, skin stretching, and massages to reduce DHT (very important!), injections of peptides in my scalp, and other alternative things.
If you really have to take the mentioned substances, start them at a very low dose and increment over time. The same thing applies when you stop them. Especially if you know you are a person who is very sensitive to substances in general (alcohol, recreational drugs...).
I would also advise not to do repetitive start and stop of substances. These changes are not good and you might increase the chances of getting it.
Consider alternative meds that are unlikely to give you these syndromes. You can research them in the forums or ask for advice. Wikipedia is not a good source. According to Wikipedia, I shouldn't be here writing this long post.
In general, take responsibility for your health. Prevent illnesses, fix your diet and sleep, take sun, vit D, vit C, study these things. I also used to be a person who would take a med for any headache or minor issue, now if I have a headache I heal through breathing and headstrong massages. It works. In the last 5 years, I have very rarely taken any med.
Take the harder road but the right one.
==================================
I gathered here some additional scientific details that can be found in my subsequent replies in this thread.
- Mechanism behind the syndrome (This is still an hypotheses we are investigating)
Premise: Testosterone is related to sex seeking behavior while Estrogen is related to libido, physical arousal and even penis nerve electrical transmission, something that would explain why I could not feel touch down there.
Because finasteride lowers DHT, your body ends up with more unused testosterone. This extra testosterone can then be converted into estradiol, therefore your body's hormone balance shifts towards estrogen, creating an estrogenic environment.
With more estrogen around, your body's estrogen receptors get more activated. Over time, too much activation can lead to these receptors becoming less sensitive (aka downregulation). This desensitization can mess with a lot of estrogen-dependent functions in your body, from mood regulation to sexual health, genital sensation and so on.
On the other side, with DHT levels dropping due to finasteride, your body tries to compensate by making androgen receptors more sensitive to the androgens still available (like testosterone). That's because testosterone is very less androgenic than DHT, so you need more. This body "fix" can therefore lead to androgens receptor dysregulation.
Another mechanism or phase could be:
<<The excessive activation of the androgen receptor pathway, coupled with low estrogen levels, can lead to the inhibition of estrogen receptor expression [through transcriptional regulation, competition for co-regulators, and epigenetic modifications].
These biochemical processes ultimately disrupt the balance between androgen and estrogen signaling, affecting the overall estrogenic activity in the cell or tissue.>>
The point is that estrogens must be in check, you don't want to crush them either with excessive estrogenic environment or with complete lack of them. The different drugs might reach the same end result via different means.
These mechanisms are tissue-dependent, which means that one might have for example estrogen receptors downregulated in the penis tissue or androgens upregulated in some specific areas of the brain.
- 2 other important mechanisms that seems to have a role (I can't list them all):
-The level of allopregnanolone in the liquor (a hormone that regulates neurons and that is also very present in the fluid where the brain swims in).
- DNA methylation of some genes (it's like cancelling some word from a book of recipes)
Sadly you can't really measure these things outside of a research lab.
- Number of incidence:
The only data available at the moment states that "PSSD may not be dose dependent" (Ben-Sheetrit, 2015).
Some studies on finasteride have hypothesized 2% of permanent effect in people taking it but the number seems to be higher. My educated guess is that there is a two digit probability, so at least 10% if not way more.
- What blood tests to do:
Me myself I would measure at least T, DHT and E2 sensitive, for 2 reasons: to have a baseline to compare for the future and to check if T/E2 ratio is alright.
In men, post menopausal women and pre-puberal young girls, the estrogen level are very low to begin with. If one uses the classical immunoassay method, the test doesn't have enough estradiol to react to and detect C-reactive protein instead, giving a fake value because it will be measuring something else.
Therefore it is necessary to use Liquid Chromatography Mass Spectrometry method. It is indicated by LC/MS acronym or LC-MS.
Sometime is also called Sensitive Estradiol because it's the one sensitive enough for men. If you use the other method you are wasting your money and getting a random number that doesn't mean anything.
MorePlatesMoreDates has an article comparing his results with the 2 methods.
.
I'm writing a post that I really wish someone had written many years ago so that I could have read it. It would save me from ruining (a big part of) my life.
I am going to talk about 3 (not so) rare sexual syndromes that are PERMANENT. They are either very related to each other, or the same thing with different names. Before doing so, it is necessary for me to explain in detail my background, otherwise you can't judge how legit it is what I am about to say. Please bear with me.
It seems relevant for me to write this post because ED and sexual issues are a common topic on this forum. Also this week is my 5 years anniversary of having this syndrome. No cake though.
I will divide this post into:
- 1 - My background
- 2 - The 3 syndromes and most of the substances causing it
- 3 - What to know about these syndromes
- 4 - My symptoms
- 5 - What to do if you think have the syndrome
- 6 - What to do if you don't have it. aka How not to get it
- 7 - EDIT: More science details for the nerds.
==========================
- 1 - MY BACKGROUND
- In 2018, I developed this syndrome (Type #1. More on that later).
- I completed a traineeship in a psychiatric hospital for several months, conducting tests and consulting patients.
- I got my bachelor's degree with a thesis on this syndrome.
- Then, I got a master's degree in psychology & neuroscience with another thesis on these syndromes (plural). I pursued this master's degree with the intention of deepening my understanding of these syndromes.
- I had a brief traineeship using EEG on patients (recording electrical brain signals with a hat).
- I completed an internship for a few months in a neurobiology lab where I conducted data analysis on mice behavior and analyzed brain samples. Specifically, I investigated apathy-like behaviors in mice with neurodegenerative disorders and autism.
- I had a second internship in the same lab, this time studying transgenic mice with Alzheimer's.
Over the past 5 years of dealing with illness, I have taken a leading role in the Italian group of patients with these syndromes. I have personally visited labs, engaged in discussions with doctors and researchers, delivered presentations about these syndromes to psychiatrists and doctors, and formed friendships with other presidents of European and international patient associations. Some researchers studying this syndrome are also affected by it themselves. A close friend of mine, who also has the syndrome, initiated a crowdfunding campaign, through which we raised 50k that we are utilizing for cutting-edge research on these syndromes worldwide. The doctors researching this syndrome are the same ones with whom I collaborated on my MD thesis. Over these years, I have read thousands of scientific articles on these topics and neuroscience in general. For my master's thesis alone, I reviewed 250 of them.
I am very likely in the top 100 people worldwide who know most about these syndromes. It is not bragging, just the sad reality. I would give away literally everything that I own, including my underwear, not to know anything about it and not to have this syndrome, without thinking a second. But here we are.
Here's also a pic of me holding my MD thesis with these 3 syndromes (PSSD, PFS, PRSD) in the title, as a proof that I know what I am talking about.
DISCLAIMER: I am not a medical doctor, nor would I like to be one; therefore, I cannot tell you what substance to take or not to take. I am a researcher in neuroscience, so take this as a neuroscience lecture.
==================
- 2 - The 3 syndromes and most of the substances causing it
#1 - Serotoninergic Drugs. NAME: Post SSRI Sexual Dysfunction (PSSD)
This common belief that low serotonin = depression is blue pill psychiatric bullshit. In 50 years of research, the evidence for it to be the case is close to zero. I am not saying that antidepressants cannot work. For certain people they do work, but the reason why they work is currently unknown. The most recent hypotheses say that they might work due to their activity on neurosteroid hormones. Anyway...
Antidepressants sold nowadays are mostly serotoninergic, meaning that they rise the serotonin in the brain, at least short term. Despite the name of this type1 syndrome, it is not caused just by SSRI antidepressants but by any serotoninergic drugs, e.g. SSRI, SNRI, SARI, tricyclic antidepressants, supplements like 5HTP... and also a continuous use of serotoninergic recreational drugs like MDMA and LSD might cause it too.
Antipsychotic drugs, that are not usually primarily serotoninergic, might cause it too. Though if you have psychosis you have a bigger problem to think about. The reason I am mentioning them is that doctors, against every single international guideline out there, often propose them as a quick fix for other problems, e.g. for sleeping. I myself have been proposed antipsychotics (olanzapine) for sleeping and I refused.
----
#2 - Hairloss Drugs that mess with your DHT and hormones. NAME: Post Finasteride Syndrome (PFS)
If you come from the GLL world, you have probably heard some of these terms. As a matter of fact, the first time I heard about Finasteride was a decade ago from Chris' article on hair loss. It was waaaay before me getting into this field.
Moreplatesmoredates also has a video on PFS, but I haven't watched it yet, so I can't comment on that.
Long story short, in genetically predisposed people, the hormone DHT makes hair die. Testosterone turns into DHT thanks to an enzyme called 5-alpha reductase (5-aR).
Hair loss drugs block this enzyme so that testosterone doesn't turn anymore into DHT.
The drugs that cause that are: Finasteride, Dutasteride, some supplements like Saw Palmetto, and less commonly but also possibly minoxidil. The last one is a different category of drugs, but nonetheless, I knew people who got it from minoxidil.
----
#3 - Skin Drugs that treat acne like isotretinoin. NAME: Post Accutane Syndrome (PAS), aka Post Retinoid Sexual Dysfunction (PRSD)
Retinoids are a class of drugs that treat acne and prevent scarring. According to guidelines, these drugs should be used only in severe cases, especially when taken orally rather than applied topically as a cream.
Their precise mechanism of action is still unknown, but they have effects on both hormones and the brain. Neurons have receptors for these substances, and they are influenced by them.
One of the most famous retinoids is Isotretinoin.
=======================
- 3 - What to know about these syndromes
The most important thing you should know is that they can be permanent.
There is no way to predict who is gonna get it and who not. As a matter of fact, my sister has taken serotoninergic drugs many times without any negative effect, and my best friend has taken finasteride and saw palmetto several times without any negative effect. Nonetheless, I got the syndrome from serotoninergic drugs and another dear friend of mine got the syndrome from finasteride. He is now the president of a European recognized association of patients with post-finasteride syndrome.
These 3 syndromes are clearly related because they are too strange and similar to one another not to be related. Yet none knows what is the cause and what would be the cure. Whoever finds one, gets 200.000$ of prize the next day. Patients are collecting money both for studying the issue and to motivate researchers to study it.
Symptoms can be related to sexuality, emotions (lack of emotions, apathy, inability to feel love or joy or fear,...), cognition (brain fog, difficulty in concentrating...), physical (dry eyes, dry skin, nerve pain, genital pain...).
They can appear after months of substance use, after a single day of use, they can appear the second or third time you use the drug after a break, they can appear after you have already dismissed the drug for some weeks... it's wild.
Doctors worldwide don't know about the existence of these syndromes. When I started this journey 5 years ago, the number of doctors who knew about it was close to zero. Now there are probably 100 doctors worldwide who have heard about it, but don't expect them to know much anyway. Most of these doctors probably heard about it from either me or one of my friends from the associations (USA, Canada, UK, Germany, Italy, and Australia for sure).
There is no cure, but there are several cases of people who healed either with time or taking some substance that somehow rebalanced their system. The same substance can have a great effect, no effect, or a very negative effect on someone, so it is a lottery, often a dangerous one.
This syndrome can happen both for males and females. Many cannot stand it and take their lives. A few people who I have met in these years are not here anymore.
===================
- 4 - My symptoms
I had already used antidepressants in the past with no side effects. I was also a very sexual guy. Super high libido, and I had never had any sexual issues in my life. Sex was the only perfect thing I had. It was amazing.
They prescribed me these antidepressants for sleep. Looking back, this prescription was against any guideline and had no scientific justification. I wasn't even depressed.
After a few days of taking these pills, my libido got canceled completely. My penis became less than one inch small and white as a piece of paper, with no blood flow. My testicles got smaller. I started having pain in my testicles and issues with my pelvic muscles. Severe ED. My orgasm got completely canceled: ejaculation (those few times I could manage to reach it) became exactly like peeing. No sensation at all. No pleasurable sensation at all. I also got genital anesthesia, meaning that if you blindfolded me and burned my penis with a lighter, I wouldn't even notice. Completely anesthetized to touch.
I got scared and I quit these pills cold turkey. For the first few months, I couldn't think. It is difficult to explain it by words, but my brain was a white screen, wouldn't produce any thought even if I tried. I would just stare at the wall the entire day and be convinced I was doomed to be retarded for life.
Every single doctor I consulted (general, psychiatrist, endocrinologist, urologist...) laughed at me and said I was just having anxiety and my side effect was not possible. This was the hardest part. I don't really know how I managed not to take my life. That's amazing to me still nowadays.
Obviously, my 5-year girlfriend with whom I was living left me some months later.
For the first entire year, I had a micro-penis, completely numbed, and I couldn't feel any emotion, nor sexual, or positive. I also didn't have any negative emotion anymore, no sadness or fear. I used to be quite an anxious guy, but overnight I became "brave" because I didn't have any fear of death.
After one year, I got some episodes of flu with high fever, and all my symptoms disappeared for 24 hours. Then I got them back but less severe. So I went from 0 functionality to 100, then back to 20 and slowly improving from there over years. Now, exactly 5 years later, I am having 40-60% functionality depending on the period. ED disappeared, and I can feel some touch again and sometimes even a feeble orgasm. Though now I tend to have premature ejaculation and pelvic contractions and pain. I have had sex a lot of times, even very nice or crazy sex, totally worth having. Nonetheless, it is not the same.
===========================
- 5 - What to do if you think have the syndrome
- If you took one of the substances I mentioned:
You should read this scientific study "Diagnostic criteria for enduring sexual dysfunction after treatment with antidepressants, finasteride, and isotretinoin" by Healy et al. 2022.
I know some of the doctors who published it. These are the only diagnostic criteria out there. Check the boxes and try to self-assess the situation. You should also print it and show it to doctors you will visit in the future because it is good proof you are not crazy. Nonetheless, expect a lot of denial, especially in the beginning when you are a bit naive. Here you need to be prepared and strong.
Join one of the forums (even better if you join several) about these syndromes and talk to people. Beware that the environment is toxic because most of these people are suicidal or in great pain. The most famous ones are the PSSD forum and PropeciaHelp forum.
If you live in a big western country, chances are that there might be some official association about this syndrome. Reach out to them.
Please don't take your life. I have been there and I was also very close, but many years later my life is better and I am glad I didn't. Also scientific research and AI are going fast; we might find a cure sooner than later.
Watch out because any substance, supplement, or med might make your symptoms worse. In my case, an antibiotic knocked me out for several months. Before taking anything, make some research to see what effect this substance had on other patients.
Don't freak out. Easy to say, harder to do.
- If you took a substance I didn't mention:
It is a bit trickier. It is possible that you got the same mysterious syndrome due to some med or supplement like Ashwagandha or St. John's wort or whatever. The previous advice still applies to you. Try to research to see if someone else on the forums got the same issue.
=======================
- 6 - What to do if you don't have it. aka How not to get it
If you don't have this syndrome, congrats. You won the life lottery (at least this one). If you still have ED, chances are it is fixable with some changes. Some of the knowledge of these forums might still be useful to you. They talk a lot about science, lab tests, supplements, and so on.
Sadly, there is no way to predict who is going to get this syndrome and who is not. In my experience, I have reason to believe that if you have already used these substances in the past, you might be more likely to get it. Maybe there is some sensitization mechanism, I don't know.
If you take these substances by pills, as opposed to skin cream, the chances are way higher. It is still possible though to get it from skin absorption, but less likely.
Ask yourself why you are taking these substances, if there is any alternative thing to try.
For example, I am having hair loss and for now, I'm doing dermarolling, skin stretching, and massages to reduce DHT (very important!), injections of peptides in my scalp, and other alternative things.
If you really have to take the mentioned substances, start them at a very low dose and increment over time. The same thing applies when you stop them. Especially if you know you are a person who is very sensitive to substances in general (alcohol, recreational drugs...).
I would also advise not to do repetitive start and stop of substances. These changes are not good and you might increase the chances of getting it.
Consider alternative meds that are unlikely to give you these syndromes. You can research them in the forums or ask for advice. Wikipedia is not a good source. According to Wikipedia, I shouldn't be here writing this long post.
In general, take responsibility for your health. Prevent illnesses, fix your diet and sleep, take sun, vit D, vit C, study these things. I also used to be a person who would take a med for any headache or minor issue, now if I have a headache I heal through breathing and headstrong massages. It works. In the last 5 years, I have very rarely taken any med.
Take the harder road but the right one.
==================================
- 7 - EDIT: More science details for the nerds.
I gathered here some additional scientific details that can be found in my subsequent replies in this thread.
- Mechanism behind the syndrome (This is still an hypotheses we are investigating)
Premise: Testosterone is related to sex seeking behavior while Estrogen is related to libido, physical arousal and even penis nerve electrical transmission, something that would explain why I could not feel touch down there.
Because finasteride lowers DHT, your body ends up with more unused testosterone. This extra testosterone can then be converted into estradiol, therefore your body's hormone balance shifts towards estrogen, creating an estrogenic environment.
With more estrogen around, your body's estrogen receptors get more activated. Over time, too much activation can lead to these receptors becoming less sensitive (aka downregulation). This desensitization can mess with a lot of estrogen-dependent functions in your body, from mood regulation to sexual health, genital sensation and so on.
On the other side, with DHT levels dropping due to finasteride, your body tries to compensate by making androgen receptors more sensitive to the androgens still available (like testosterone). That's because testosterone is very less androgenic than DHT, so you need more. This body "fix" can therefore lead to androgens receptor dysregulation.
Another mechanism or phase could be:
<<The excessive activation of the androgen receptor pathway, coupled with low estrogen levels, can lead to the inhibition of estrogen receptor expression [through transcriptional regulation, competition for co-regulators, and epigenetic modifications].
These biochemical processes ultimately disrupt the balance between androgen and estrogen signaling, affecting the overall estrogenic activity in the cell or tissue.>>
The point is that estrogens must be in check, you don't want to crush them either with excessive estrogenic environment or with complete lack of them. The different drugs might reach the same end result via different means.
These mechanisms are tissue-dependent, which means that one might have for example estrogen receptors downregulated in the penis tissue or androgens upregulated in some specific areas of the brain.
- 2 other important mechanisms that seems to have a role (I can't list them all):
-The level of allopregnanolone in the liquor (a hormone that regulates neurons and that is also very present in the fluid where the brain swims in).
- DNA methylation of some genes (it's like cancelling some word from a book of recipes)
Sadly you can't really measure these things outside of a research lab.
- Number of incidence:
The only data available at the moment states that "PSSD may not be dose dependent" (Ben-Sheetrit, 2015).
Some studies on finasteride have hypothesized 2% of permanent effect in people taking it but the number seems to be higher. My educated guess is that there is a two digit probability, so at least 10% if not way more.
- What blood tests to do:
Me myself I would measure at least T, DHT and E2 sensitive, for 2 reasons: to have a baseline to compare for the future and to check if T/E2 ratio is alright.
In men, post menopausal women and pre-puberal young girls, the estrogen level are very low to begin with. If one uses the classical immunoassay method, the test doesn't have enough estradiol to react to and detect C-reactive protein instead, giving a fake value because it will be measuring something else.
Therefore it is necessary to use Liquid Chromatography Mass Spectrometry method. It is indicated by LC/MS acronym or LC-MS.
Sometime is also called Sensitive Estradiol because it's the one sensitive enough for men. If you use the other method you are wasting your money and getting a random number that doesn't mean anything.
MorePlatesMoreDates has an article comparing his results with the 2 methods.
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how long have you been taking it?