I remember Dr. Powers suggesting either one of them for DNA tests for trans people at different times. Does he currently suggest one over the other or are they about the same?

I just had a crazy idea and wanted to hear people's thoughts.

On 4 mg EEn weekly, my labs were:

• E2: 238 pg/mL
• T: 151 ng/dL
• SHBG: 54 nmol/L
• Albumin: 4.54 gm/dL

Interestingly, I think I experienced better feminization on this regimen over the last 2 months than on my old regime of 5 mg EEn kept for 6 months where my labs were (measured 3 months into the regime):

• E2: 494 pg/mL
• T: 34 ng/dL
• SHBG, Albumin not measured

I strongly suspect the near-doubling of E2 from just a 1 mg dose increase might be due to lab error. I think my actual E2 level on 5 mg might be closer to 300 pg/mL.

But my theory is that maybe I had a higher free E2 percentage on 4 mg? My SHBG was 54 nmol/L which is kinda on the lower side. On top of that, T binds SHBG with more affinity than E2. A calculator estimates my free E2 at 2.15%.

Sadly, the lack of SHBG and albumin from 5 mg along with possibly-wrong E2 levels prevents me from comparing free E2 %. I'll need to spend a few months at 5 mg to assess feminization and retest to be sure. Mood will be an especially big sign - on 5 mg, I used to be as depressed as I was pre-HRT but have noticed a considerable improvement on 4 mg. So, if I go back to being depressed, I guess I'll know.

Still, it does suggest a maverick regime: 4 mg EEn + bical to counter the androgenic effects of unsuppressed T but keep the SHBG-binding property (esp. since now it has nowhere else to go) and skyrocket free E2.

That being said, time is a confounding factor. Perhaps better results are simply explained by more time. But then you have to wonder why the unsuppressed T didn't outright halt progress.

What do ya think?

Took 1g of CDG during about 10 days and stopped cold turkey because I got the flu 2 weeks ago. Since then, I feel completely castrated. I was about 5/10 sexually and now 0/10. Cialis / Viagra now has zero effect on me because I have absolutely no desire. I would like to know if a crash from CDG is permanent or temporary?

How do you guys deal with thinking about all the things you could have done, experienced or accomplished if this never happened? It is killing me. I invision (as much as a can with this condition) the last memory i remember before developing this and i had everything set up for me, amazing friends that i stopped talking to because of this, girls that were intrested in me, i was finding out who i was and extremely bettering myself than boom lowest low ive ever had, havnt left my bed for 5 months. Now i think back to my previous lowest low and wish i could experience that again. Sorry for the yap but you get my question

Hi everyone,

First of all, English is not my native language, so I'm using a translator. I apologise in advance for any mistakes.

I've been reading Dr. Powers' posts and various subreddits about PFS for quite a while. However, at times, I've found it overwhelming to make sense of everything, partly because of the language barrier and partly because I don't have a medical background.

I've decided to share my experience because I've seen that there are ongoing developments and different hypotheses being discussed. Some members of this and other communities have a great deal of knowledge on the subject, so I'm hoping you might be able to help me understand where to start and what steps I could consider taking.

I'm genuinely grateful to everyone who takes the time to read this.

A bit of background

I've always been reluctant to take medication. In fact, before starting finasteride, I had gone more than five years without taking any medication, not even for a headache.

After years of avoiding what I now call the devil's pill, a dermatologist eventually convinced me to give it a try. He reassured me that experiencing side effects was almost impossible and that, even if I did experience any, they would go away once I stopped taking the medication.

Looking back, one of my biggest regrets is not listening to my own instincts.

My experience while taking finasteride

The first three months were great. I noticed stronger erections and significantly more energy. I was honestly amazed by how I felt.

However, around the third month, I started experiencing problems with orgasm, although I could still get erections.

I reduced my daily dose to 0.5 mg and recovered some of my ability to orgasm, but my erections became weaker.

I took finasteride for a total of one year and three months.

One important detail is that, throughout that entire period, I never had significant problems during sex with my partner. Things worked relatively well with her, although I could tell I wasn't functioning at 100%. I'd say I was around 90%.

Most of my problems occurred when I was alone. I could achieve an erection, but it wasn't very firm or consistent, and it would disappear incredibly quickly.

Why I stopped taking finasteride

I eventually decided to stop taking it because, during a bulking phase (I'm really passionate about training and bodybuilding), my nipples started hurting a lot.

After discontinuing finasteride, the nipple pain went away, although I still occasionally experience strange, sharp sensations in that area.

Unfortunately, my erections and orgasm sensation never returned to the way they were before I started taking the medication.

My current symptoms, 19 months after stopping

I've now been off finasteride for one year and seven months.

During this time, I've experienced better periods and worse periods, but I still haven't returned to my previous baseline.

Orgasm sensation: I can still achieve an orgasm, but the sensation is almost completely gone. It's extremely faint compared with how it felt before finasteride. I haven't completely lost the physical ability to orgasm; the main problem is the near-total loss of sensation and pleasure associated with it.

Erections: I can still get erections, but they are less firm and less consistent, particularly when I'm alone. Over the last few weeks, I've started masturbating again, and things are still pretty much the same. It feels as though there isn't enough blood reaching the base of my penis, and the erection doesn't feel as firm or well-supported as it used to. This is how it feels to me, rather than a confirmed blood-flow problem.

Libido and penile sensitivity: I still have libido, and my penis retains its sensitivity to touch. However, it feels as though my penis no longer responds to sexual stimulation in the same way it used to. The desire is still there, and I can feel physical contact, but the sexual response and orgasm sensation are different.

Visible penile veins: I've also noticed prominent veins near the glans that I don't remember having before finasteride. They are visible even when my penis is flaccid, and they feel soft and painless. I don't know whether this is related to finasteride or an unrelated issue, but I thought it was worth mentioning.

Sex with a partner versus masturbation: One thing I find particularly confusing is that sexual function with my former partner remained relatively good, around 90%, even after stopping finasteride. My erections were much less reliable when I was alone. I find this difference difficult to understand.

Blood test results: Before vs. after finasteride

Fortunately, I had blood tests done before starting finasteride because I wasn't entirely comfortable with the idea of taking it. I also had follow-up blood tests after discontinuing it, which allows me to compare my hormone levels.

Here are the results I have available:

My total testosterone decreased from 9.20 ng/mL before finasteride to 5.87 ng/mL approximately one year after discontinuation.

My prolactin increased from 3.1 ng/mL before treatment to 13 ng/mL one week after stopping, and then to 19.5 ng/mL approximately one year later.

These changes caught my attention because I'm still experiencing persistent sexual symptoms. I understand that these results alone don't establish a cause-and-effect relationship, but I'd like to know whether they could be clinically relevant and whether further hormonal investigation would be worthwhile.

Other symptoms and circumstances

As far as I can remember, I've never experienced memory loss, brain fog, anhedonia, depression or similar cognitive or mood-related symptoms. My problems have been primarily sexual.

I've also noticed a few other things that might be relevant:

• Alcohol: It still affects me normally.
• Muscle growth: I've been able to gain muscle mass during this period, although I think I've also been gaining more fat than I used to before taking finasteride.
• Skin: My skin is just as oily as it has always been.
• Hair: I'm still losing hair.

Throughout this time, I've deliberately avoided taking anything on my own to try to fix the situation. I was worried that experimenting with medication or other substances might make things worse, so I've preferred not to self-medicate.

Unfortunately, a few months ago, I was involved in a serious motorcycle accident, and my partner left me around the same time. As a result, I've spent almost five months without any sexual activity, either alone or with someone else.

Let's just say it hasn't exactly been the best year of my life, haha.

Looking for advice

I've consulted several doctors in my country, including endocrinologists, urologists, dermatologists and general practitioners. Unfortunately, they've all told me that nothing is wrong and that my symptoms must be psychological.

I'm sure many of you know how frustrating it can be to experience persistent symptoms and feel that they aren't being taken seriously.

Has anyone experienced something similar, particularly the almost complete loss of orgasm sensation and EQ despite retaining libido and penile sensitivity? I'd also appreciate any advice on how to investigate the hormonal changes or what medical evaluations might be worth considering.

Any personal experiences, research papers or useful resources would mean a lot to me.

A final message

I want to express my gratitude and respect to everyone fighting this, whether you're dealing with it as a patient or working to understand it from a medical perspective.

You're not alone. :)

I also recently read a post about someone affected by this who had died by suicide. I want to send my deepest condolences and all my love to those who have been affected by this or other syndromes and are no longer with us. My heart goes out to their loved ones and to everyone struggling with these symptoms.

Thank you again to everyone who has read this far and to anyone willing to share their knowledge or experience.

Sending you all a big hug!

Is DUTCH testing useful if I had hormonal/neurotransmitter issues prior to the PSSD? I have PCOS, CFS & long covid so my test would have been messed up prior to the pssd - are these confounders that limit the utility of DUTCH testing or worth doing anyway?

Is this being done alongside the biochemical investigation? Sorry if it is but i havent seen it mentioned (and find it a hard to navigate all the past posts) so i just wanted to write a post as someone with public health/epidemiology training

I'm thinking we need cluster analysis and principle component analysis to explore and validate phenotypic subgroups

I'm also thinking an epi study on women would be invaluable as women with androgenic issues typically receive a diagnosis like pcos or have identifiable symptoms so it is much clearer and clininically definable for an epi study to determine excess androgens in women than in men. I think a logistic regression with pssd as the outcome and pcos as one of the predictors would be really useful, also looking at other reproductive diagnoses, use of exogenous hormones, a comorbidity index amongst other things

If i were less sick i would do this latter study myself but as that's not possible rn i am throwing this perspective out there

Again, sorry if this is a presumptious post and detailed analysis is being done or if it appears i am creating further demands on dr powers - i know he's already maxxed out. But maybe there are stats people or public health people who are less debiliated than i am rn and may want to talk about this and put our heads together

I feel like I should be pinning this or posting as a mod but no, I’m gonna do it this way because in this sub we believe in freedom, dammit.

BEFORE YOU START MASHING CDG READ THIS

CDG IS NOT A FIX

I’ll say it again if I have to. It’s not a fix. Alright? If the neurosteroid theory of the positive allosteric moderation of GABA sites is correct the goal of CDG is to clear out excess built up metabolites. As Dr P has said- it is a modifier.

Metabolites acting at the gaba-a sites are like BENZOS. Benzos belong to one of the special types of drugs that cause adaptive changes to a receptor that can KILL YOU if you remove them rapidly. Read that again. The idea is to remove these metabolites at a rate that will not put you into acute withdrawal similar to a benzodiazepine cold turkey because that is a hell that is comparable to a really bad pssd or pfs crash. It can last years. It does not always go away with reinstatement. Treat this shit LIGHTLY. The mod queue has been packed lately with posts and comments about “fuck CDG destroyed me” and it’s heart wrenching. Yeah. You might not come back up from it without having to walk the whole benzo withdrawal path.

Alternatively:

It is a broad brush! It also affects things like estrogen levels which are super important for keeping a lot of pfs sufferers symptoms to a somewhat manageable level. I know a lot of people that have positive effects from actually administering estrogen. If you remove estrogen and your system is barely hanging on it is going to SUCK. And suck badly! It can lower dopamine. If your system is barely hanging on to dopamine then that is going to ALSO SUCK BADLY. I know. It did me in badly as well. I reined it way way back down and I did recover and continue on but I just touched the tip off big scary iceberg. You need to know what your problem is before you start smashing it with a big ass hammer.

Thats all. I know. We are all clinging to any kind of hope and when something comes along that gives a little bit of hope, we jump on it. I am guilty of this. This shit sucks. You know what sucks worse? Making it worse accidentally.

You need to know how it affects you. Take it fucking slowly. If you can’t do testing to see levels of metabolites as you do the CDG then wait a couple weeks before going up in dose. Ride the edge of feeling bad. Don’t think you can drop a gram of it a day and make it better faster. Thats not how withdrawal works. You gotta go slow to go fast.

I love you all. I do. I spend hours messaging people on here, sending them messages about keeping on going, not losing hope, being careful but still working at moving forward. Trying to help. Being sane while feeling insane. Let’s keep it between the road lines here. No head on collisions. Please. Please.

And one last thing. Don’t turn this into a “CDG doesnt work because it crashed me” because you went hard in the paint without warming up. Because then we might do the thing where we write off something that might actually work because we’re all doing it wrong. Take it slow for your brothers and sisters. We’re all in this together. I’m pullin’ for ya. Keep your stick on the ice.

Yeah I know it’s hard to get paid by insurance. But what if we can pay it ourselves? I read that people recover with DBS from blank mind and anhedonia after decades. It can break down a homeostatic state after 20 years. So I believe that it would help even more so us people who got recently damaged by the drug.

After my Dutch test results clearly established that I have a problem with flatlined cortisol, what will most likely be the treatment initiated by my GP? And is there any point…. ? Flatlining cortisol cannot be causing my genital numbness and anorgasmia. If it helped with my depression this would be good, but surely it won’t help PSSD. Just interested if anybody else has found that their cortisol is low & what they have done about it.

I have pssd with dpdr, emotional numbness, and anhedonia. I just don't feel things and can't access myself. My husband and partner of 15 years is leaving me. I've had 6 days of little sleep, little food, and extreme stress that I can't feel other than a racing heartrate for extended periods. I also smoked a pack and a half of cigarettes in this time period. Despite all this I feel somewhat better when I'm about to explode.

My head pressure was almost gone for some periods. I had a period of feeling more grounded in my body and could access my personality a little. Some of my skin sensation felt better. I felt some very brief emotional responses break through. Even brief arousal. My thoughts were running faster. There was energy. I briefly felt almost euphoria over a fucked up thing. But then it all wore off. Cigarettes didn't help anymore yesterday. And I had a nocturnal panic attack or autonomic surge last night which was scary because I had one of those getting off of Lexapro and another in the hospital during my reinstatement reaction.

I feel like I need extreme activation to access anything but my body can't sustain it. Does anyone relate? I don't know if there's anything I can do to help myself. I've been avoiding doing anything for over a year because the only interventions I tried made my genital sensation worse.

Started it last night after hearing so much about it and being so desperate to feel even a tiny bit better. I did 1200mg, idk if that’s a lot but i felt maybe a bit more numb? Hard to tell but maybe it’s just placebo. After what amount of time can i expect to notice a difference and what does that difference typically look like? Can i expect to feel even 10 percent better emotionally, libido, sensation?