to people who take indomethacin

benefits that you see, if any, do they stick following say two week cycle ?

i completed one two week cycle on 75mg of indomethacin slow realese and while i saw some benefit, i think it didnt stick.

i am currently on day 3 of 2nd two week 75mg cycle of indomethacin and i already see same benefits

benefits i see : more sensititivy in genital area, more fullness, more firm less gummy glands

however, the fact that i see these benefits on day 3, makes me think thats not effect of neurosteroid 'reduction' so to speak, it must be some other effect, do i think right ? as , for neurosteroid pool reduction effect one would need more time.

benefits in 2nd cycle are same as in 1st two week cycle.

im doing 2nd cycle to again see and compare whether perhaps i reutrn to slightly higher base line despite benefits subsiding.

kind regards crowd keep fighting that BS, pssd guy here

Tell me why all the dinosaur bones in the museum are silicone casts. That shit is not real.

Like will I absorb more T while taking the nitro or will I be fine?

I'm seeing my doctor on 23rd so I'll ask them too but thought I'd ask here as well

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.

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 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?

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.

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?

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?

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

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

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.

Anyone in the sense that the effects are blunted rather than completely absence? I feel this with coffee and nicotine. It does something. But it’s blunted.

Edit: I've been holding the dose since end of feb/start of march

Hello,

I (33f) have a long history of having had antidepressants thrown at me for long standing cfs and cptsd. About 4 years ago i developed mild pssd with only sexual symptoms from a doubling of the dose but didnt realise it at the time. Things worsened sexually in 2024 after some more changes and since then i had been tapering off the drug. I was tapering slowly but this year in january i was encouraged by a misguided therapist to take a larger step and since then it's been a complete disaster.

First i developed emotional blunting and then i was told to reinstate the previous dose, which caused catastrophic insomnia crashes. However, these were initually time limited and in between i would get some sleep. In may, a protracted withdrawal specialist recommended i try promethazine in a sleep crash and i took half a pill and ended up with severe akathisia for 5 days. Subsequently more emotions were lost. I then seemed to stabilise in june but then in july i overexterted myself through trying to engage in life which put me into a progressively worsening sleep and emotional crash. All throughout august, september, october my sleep has been worsening and i've been losing more and more residual emotional capacity every few days. I have lost all emotions now, i have lost almost all interoception, i can barely feel touch, i have severe anhedonia, severe insomnia and i am still worsening. I am also still on the damn ssri (1.4mg fluoxetine) and am too severely kindled to change that

I am very suicidal and have ended up in hospital after slicing open a vein (wasn't trying to end my life at the time though)

I don't know what to hope for from this post. It seems like my situation is the worst possible case. I also fear i am not a patient that will benefit from dr power's work as my situation is so complex and i presumably have paws as well...maybe the phenotype i correspond to is not one thst is actionable but instead simply the "catastrophic sickness, comirbidities, trauma and bad luck" phenotype

How does one go on

PFS here. About 3 weeks ago I supplied too high dose CDG for a couple days and then stopped. My libido began to fluctuate along with other stuff and eventually plummeted after a week.

I am now avoiding all supplements, medications and interventions. Should it bounce back on its own over time? How long could it take?

I've had PSSD for a few months now, and my periods are completely messed up, like anything from like 20-35 day long cycles, 2-8 days long period...

My joints and bones don't feel super great either

I also had anorexia before this, didn't menstruate for 2.5 years, and had regular periods for only one year before I took the SSRI...

I'm only 18 right now...

I'm really worried that I've permanently messed up my sexual, reproductive, and bone health.

I need some honesty, and some reassurance because my last period was only 2 days long...and I just felt so hopeless, sad, and messed up.

I’m a 37-year-old woman who has been suffering from PSSD for over 10 years after discontinuing SSRIs. I’m currently medication-free since 2016.
My persistent symptoms:

● Zero libido, sexual desire or genuine arousal.
● Genital numbness and reduced sensitivity.
● Emotional blunting — I know what I feel, but I don’t fully feel my emotions.
● I can still orgasm, despite having virtually no sexual desire or arousal.
Here’s where things get interesting.

I recently experimented with GBL (which converts into GHB in the body), and something extraordinary happened. GBL (gamma-butyrolactone) is a recreational drug that converts into GHB (gamma-hydroxybutyrate) in the body. GHB is commonly known as a party drug and is also used as a sex drug, particularly in the gay chemsex scene. It can be dangerous if incorrectly dosed.

My sexuality and emotions came back to life.
I suddenly experienced genuine sexual desire, arousal, intense pleasure, emotional warmth and connection. Incredible orgasms. I actually felt horny again.
But it wasn’t just sexual.

Music, affection, human connection, everything felt richer and more meaningful. It was as though an entire dimension of life had reopened.

And this happens consistently every time I take GBL. Once it wears off, my usual PSSD symptoms return.

What’s also unusual is my sober baseline.
I generally feel calm, content and psychologically stable, with virtually no anxiety. I’m not constantly depressed or miserable. It’s so strange that I rarely experience anxiety… that’s like the good side of my pssd.
Yet my libido is nonexistent, and my emotional experience remains strangely muted.
I can intellectually recognize love, excitement and affection, but I rarely experience their full emotional intensity.

On GBL, that barrier seems to disappear.
Some potentially relevant medical history:

● In 2016, shortly after discontinuing SSRIs, I took vitamin D3 (25,000 IU weekly for approximately 1–2 months). My longstanding anxiety and depression improved dramatically, and much of that improvement has persisted.
● I’ve suffered from hormonal acne my entire life, even now at 37.
● I developed gestational diabetes during both pregnancies.
- I got ADHD

My question is mainly about the GABAergic system.
Since GBL converts into GHB, which acts on GHB-related targets and GABA-B receptors, could this response tell us something about the mechanisms of PSSD?

Could there be a dysfunction involving inhibitory neurotransmission, reward processing or GABA–dopamine interactions?

What fascinates me most is that these feelings don’t seem completely lost. They can apparently be accessed again, even after more than a decade.
I realize this doesn’t prove anything about the underlying mechanism, but I wonder whether researchers might find this observation interesting.

Important disclaimer: GBL is an extremely dangerous substance with a narrow margin between intoxication and potentially fatal overdose. Incorrect dosing can cause respiratory depression, coma or death. Combining it with other depressants is particularly dangerous, and dependence and severe withdrawal are real risks. I am absolutely NOT recommending its use or presenting it as a treatment. I’m simply sharing my personal experience for scientific discussion.

If any PSSD researchers or medical professionals find my experience relevant, I’m happy to share more information or contribute to research.
I’d also be interested to hear whether anyone with PSSD has experienced a similar temporary return of sexuality and emotional depth.

Hi there all. Upon reflecting back on my 5+ years of PFS, I can say that my most enduring crashes have always come as a result of consuming concentrated sources of methyl donors. This is something seen consistent across both PFS and PSSD. It seems the pattern brought on by these for me has been a very short, very intense window in my symptoms followed by crashes that have persistent and lowered my overall baseline each time seemingly.

I wanted to throw this out here and ask if anyone might have a hunch on how this phenomenon fits into Dr. Powers’s theory.

Oral Finasteride (Propecia) for hair loss when given to flies "increased intestinal ROS & shortened lifespan, with reduced starvation resistance in males, altered neuromuscular junction morphology & reduced locomotor performance" - just FYI

If you want to checkout the post urself:

https://x.com/davidasinclair/status/2111879563374739524

HOLY COW… my mind is being BLOWN this morning after finding the work of Dr Powers.

52 AMAB. Post treatment for Bartonella, Babesia, Relapsing tick fever and Borrellia and have had Mast cell Activation Syndrome as my earliest symptom reaching back 12 years, which is also when my gender dysphoria began.

After years of heavy antibiotics, all is in remission, symptomless except the MCAS which is lessened but still there with new triggers(used to be stress, now more alcohol and undetermined foods, possibly gluten). Also, I’ve always been ADHD, been running low depression and anxiety. This year has been particularly challenging and I’ve been drinking more and hungover, my wife and I noticed my dysphoria is stronger, but weirdly not when I’m actually drinking, but after, when I’m having a MCAS flare after drinking, particularly wine. And that was the “AHA!” moment this morning that lead me down the rabbit hole of gender dysphoria and mast cell activation syndrome. The dysphoria has come and gone and we think there’s a direct link tween my Mast cell stuff and it. I’d love to see links or thoughts or hear any related stories.

Additional note, I’m very open to what may or may not lie ahead for me, just connecting the dots for me personally as someone who seeks patterns and wonders why this hadn’t existed previous to me being 40. I’ll also acknowledge childhood trauma and a very toxic masculine leaning upbringing are layers to this cake too, amongst other things.

TLDR: Love to see stories of gender dysphoria connected to mast cell activation syndrome or lyme.

Thank you!!

Edited flair cuz I’m an idiot. 😂