I ask this because i have pssd, but not sure if im still haveing severe withdrawals after 7 years ( some symtpoms still longer like insomnia) or that i did damage to my system after or that withdrawals caused my symptoms after years of being off.

So i started to test the gut theory like most others as i had horrbile depression anxiety and insomnia. Some people mentioned sibo so i decided to try antibioitc and antimicrobials, it didint work and i started to get mild gut pains mixed with yellowish stools.

Then a dr suggeted mestinon to speed up motilty to see if maybe thats whats causing the yellow stools (all gall bladder was normal). Thats where i developed extreme intestinal pain that was 247 and lasted till now. 2 years later.

I still wake up at 3 am with pain and fullness in the transversw colon with yellow stools.

I still trying to figure this out, but i did notice that cholinergenics makes me very anxious but it feel more of a nervious system issue with tremours but its not the same as a heart pounding head anxiety...

If i take anticholinergenics for sleep i start to get doom sensations depression and more dysphoria. So im not sure if dr will has any ideas on this, i dont know if getting off ssris just destoyyed my body , like maybe people have dependency on the drug and with out it my body cant function. All systems react with advese events like mestinon.

I always trying to treat my gut but nothing works. I wonder if reinstalling would fix all these cascading health deteriouration or is this a new condition that formed.

Ps. I always have tremours where hands shake 247. When i talk i have a shaky voice and i alwsys feel shaken up.

My libido is in the f moon, but my ED is not that good yet, also, yesterday I hit the gym as a beast. What is happening?

This is my 4th day using CDG. What should I expect?

Anyone suggest a fix? I don’t take the tada much but still

So can anyone who knows more explain the biochemical reason as to why i require oral E2 cycles to compliment shots but also benefit from calcium d glucarate ?

If oral e2 increases metabolites but i benefit from it but also taking cdg helps with those metabolites being cleared.
Is it actually possible to need oral e2 for the estrone sulphate and estrone boost but also having to aid the clearance process ? In my mind people who have slow comt oral E2 is a no no for them because it raises the metabolites much more than injections am i wrong ?

for PFS the term and code are

MEDRA: 10082430

Term: Post 5-alpha-reductase inhibitor syndrome

So despite a very high dose of EEn (8mg, weekly) and 0.5mg Dutasteride, I continue to remasculise at an alarming rate, and my T levels keep rising, even with increases in E dose.

in February of this year my E was 425 pmol and my T was 0.888 nmol, this was at a dose of 6mg.

in July at a dose of 7.2mg, increased to such after getting my levels in February, my levels were 812 pmol and 1.2 nmol (already rising)

then last week i got my bloods done again and my levels were 1190 pmol and 1.8(!!!!) nmol, this was after another dosage increase to 8mg. i’m so confused??? i added dutasteride in the time between those last 2 blood tests but a 50% rise in T is way beyond what is projected on duta, and as you can see it was already rising before then….

so now im pretty sure i have nccah, but i cannot afford nor have the access to an endo to get it officially diagnosed, leaving me with what feels like no option other than detransition. i’ve ordered bica and am hoping/praying that it will solve my issues… im still experiencing breast tenderness/growth which is even more confusing. i just want my transition/life back, this is dominating everything for me right now. things were going perfectly for 11 months…

fwiw my gonads are completely suppressed and my DHT is <0.17nmol

my symptoms:

- Acne on my face/back/chest/belly/arms

- Dramatically faster body and facial hair growth (post-10 laser sessions, it's like i had 0)

- I'm losing scalp hair rapidly

- I'm getting night/morning erections every single day

- I'm sweating a ridiculous amount

- Body Odour is back

- My skin is greasy/flaky and my sebderm has returned for the first time since starting E

Decided I’m going to try the method Dr Powers suggested recently (upping CDG until anxiety etc then dropping back slightly and so on).

First few days on 500mg I was getting a really sore neck. Sounds odd but that’s usually pre migraine for me, which could make sense since there’s evidence migraines are caused by low estrogen signalling (so low serotonin/dopamine production). However this has normalised now, no neck pain on 500mg per day. My thoughts are the initial few doses caused a drop in estrogen, reducing signalling. This then led to better estrogen signalling as clearance occurred.

I’m now wondering how long to remain on 500mg. I have DPDR so I’m unsure how obvious the physical effects of the anxiety you’re supposed to feel at some point will be for me (I don’t get physical anxiety just mental). Should I up the dosage soon or remain on 500mg for a bit longer as it’s only been a week, or is it worth upping it and pushing the boundary sooner?

I’m 6 years in and had surgery for my hip. I’ve had severe complications like tendonosis and just painful soft tissue all around the area. I want to trial Peptides. But, fear since this is a sequencing issue it will backfire. I need a glimmer of hope that healing can still improve. Am I insane for looking into this?

I could only find one company that offers CAG tests specifically and it’s another $500, pretty steep after paying $500 for the WGS. Any info is appreciated.

I’ve noticed a good number of PFS people, including myself, have het stop or otherwise obviously bad mutations.

I am curious if targeting upregulation of that gene would be effective, if the stop codon version would get cleaned up immediately and this would effectively unblock it.

I have a het abcc2 stop codon that’s one of my main offenders. I’m struggling to find items that will upregulate it and not cause anti androgen effects.

UDCA and Alpha-Lipoic Acid are the AI suggestions for me here.

Is this idea worth exploring and does anyone have experience with either of those two things?

As predicted by Dr Power's theory, I have frequent windows where my libido and orgasm quality improve dramatically, which happen at seemingly random intervals every two to three months or so. But my urine sample tests shows apparently normal hormone ranges, with the exception of 5a-androstanediol, which is very low as opposed to being very high as the theory predicts. My oestradiol is also very low, although I have no idea what that means.

I'm honestly gutted. There's essentially no other viable treatment now that could fix the underlying cause of our issues other than this one and I am lost about what to try next. Since my hormone levels seem normal I doubt I can persuade my doctor to let me trial HCG. My worst symptom has been steadily worsening ED and erection maintenance issues that have left me totally impotent, and which shockwave therapy has proven useless for treating.

high e2 ,High prolactin

Is there any hope for post drug syndrome? I fear that there is no cure for it. Dr. Powers is trying his best, but it seems impossible to cure this syndrome. The drug has caused so many symptoms in your body that are undetectable in any test - your height has decreased, your penis has shrunk, your testis has shriveled. How can all of this be reversed? The treatments recommended by Dr. Powers seem to be ineffective. Looking at the page, no one has fully recovered. It feels like a miracle is needed for us to be free from this suffering. Some days, I can't help but wonder if I did something to deserve this punishment from God.

debating taking this drug as I heard others have for the same issue. My c cortisol is 621nmol/L

Hello everyone,

I’m sharing my story and my current situation, hoping to connect with others who are going through or have gone through the same thing. I took half the recommended dose of finasteride (0.5 mg) from 2017 to 2019. The side effects appeared gradually over time. At first, I felt “castrated,” with a sensation of reverse androgenization (as if I were a woman). Over the years, there was a slight overall improvement, but the COVID pandemic and the vaccines caused a slight setback.

My situation today:

No morning erections.

No spontaneous erections.

Erections are often flaccid when they do occur.

Complete lack of arousal or response without strong visual stimulation (porn). Recently, I’ve noticed that the visual-brain connection still reacts a little (the onset of a superficial erection, especially after a course of glutamine for my gut), but it doesn’t go any further.

Presence of tinnitus.

What I’ve tried:

I tried HCG, which helped me wake up better in the morning, but I stopped after 2 weeks because I wasn’t sure if it was really appropriate or safe for me.

A recent 1-month course of L-glutamine (for the gut), which seemed to stimulate the central nervous system somewhat via the gut-brain axis, but without addressing the underlying issue.

What should I do or try at this point?

For those who have successfully improved these specific symptoms (lack of morning/spontaneous erections, heavy reliance on visual stimulation, neurological/endocrine component):

What approaches have you successfully explored, or which ones should be avoided at all costs (particularly regarding HCG in the medium to long term, or other protocols)?

How do you manage this physical inertia despite mental/visual stimuli?

Thank you in advance for your feedback and advice.

Barring result turnaround, is there any reason to order the Professional or Comprehensive bundle over the Rare Disease and Carrier Screen WGS Bundle for PSSD?

So it seems I have finally recovered from the anxiety and panic attacks caused by CdG. I did also come off trt so I can't say with certainty what my baseline is but as of now, if would say my baseline is worse that before not better. That could be due to a shit down hpta axis but idk. My balls feel fuller which probably means my hpta is kicking in. Will have to wait more time to asses. Wanted ti post to let yall know CdG did not permanently give me anxiety attacks.

I've been suffering from PFS for seven months. I used finasteride 1mg for a week starting September 21, 2025, then had a relapse. I recovered within a month and a half. I went back to using a topical finasteride product at a concentration of 0.01% for two months, then developed tinnitus. I stopped using the topical solution, then had another relapse that made the first one seem like a game. I experienced all the symptoms of PFS. I recovered from most of the sexual and physical symptoms, the panic attacks disappeared, and my brain fog improved by 50%, but I still have tinnitus. It's turning my life into hell. I've thought about suicide several times because of it. I have a sound when I clench my teeth, like an electric shock, but without any sensation, just a sound. When I touch my forehead, I hear the same sound, and when I rub my nose, I hear the same sound. These symptoms are getting much worse, and my neck also makes the same sound. I had a cracking sound in my jaw muscles for a while, then it disappeared. I think I have a deficiency in GABA-modifying neurotransmitters. What can I do? Please help me

367 and counting. I need 1000

I’m curious on peoples thoughts. For about a year I micro dosed E and never achieved suppression. After that I spent a year on 4mg per week using EEN and was able to achieve suppression. After a year I went and started seeing an endocrinologist and they switched me to 2mg per week of EC. I knew the dose was low but wanted to trust them. They lost suppression and refused to increase the dose so I switched to another physician. They started me on 5mg per week of EV and my levels were suppressed but my E2 was way too high so we lowered to 4mg then 3.5mg and the finally switched me to 4mg per week of EC.

These physicians refuse to test at trough but rather like at peak around 4 days. They also only test for E2 and T

My question is between losing suppression and being on a mega dose of E2 my breast size increased like a full cup size. I haven’t really seen that type of growth since settling into my new dose about a year ago.

Why might this be?

Hi everyone! I recently got my WGS results. If you are interested feel free to look through them and to message me if you find anything special. The 23 variants I found through my VCF and BAM are listed below.

I figured I would also share my story quickly.

I started fluoxetine at 14yo in late 2019 because I was stuck in a vicious anxiety/IBS cycle. I felt great for a few years, then sexual symptoms gradually appeared in early 2022 (zero libido, ED, reduced sensation,anorgasmia, etc.).

My doctor eventually told me it was probably related to the medication and could be dose-dependent, so I slowly tapered off and stayed off for about 4 months. My sexual symptoms didn’t improve, while my anxiety and depression got much worse, so I restarted fluoxetine. I did not know about PSSD at the time, neither did my doctor

I discovered PSSD about a year ago and stopped fluoxetine again 10 months ago. I’ve now been off it for about 14 months total, with no improvement in my sexual symptoms since 2022.

I also had a 2-week window on 450 mg Wellbutrin about a year ago: orgasm became much harder to reach, but when it happened, it was a lot better.

Thanks to everyone here and on discord for giving me hope

From "high priority list"

CYP2D6

c.451C→G — p.Gln151Glu — rs78482768 — Het — G>C — AF 0.245% — REVEL 0.230

c.19G→A — p.Val7Met — rs72549358 — Het — C>T — AF 0.245% — REVEL 0.027

These are two of the four variants defining the CYP2D6\28 haplotype, all four variants are present in my WGS*

UGT2B28

c.1401_1406delinsCATGCC — p.Cys469Pro — no rsID — Het — GATGTG>CATGCC — AF 0% — BAM variant

UGT2B7

c.801_802delinsTC — p.Tyr268His — rs386675647 — Het — AT>TC — AF 0% — BAM variant

AR

c.2444G→A — p.Ser815Asn — rs2147536099 — Het — G>A — AF 0% — REVEL 0.796 — Flagged from BAM in gene.iobio, but with low evidence

Everything else

CYP21A2

c.844G→T — p.Val282Leu — rs6471 — Het — G>T — AF 1.09% — REVEL 0.311

HSD3B1

c.212G→T — p.Arg71Ile — rs4986952 — Het — G>T — AF 0% — REVEL 0.414

MGME1

c.532C→T — p.Arg178Trp — rs143417446 — Het — C>T — AF 0% — REVEL 0.671

HTR4

g.148665556T→C — protein N/A — no rsID — Het — T>C — AF 0% — REVEL N/A

SLC22A24

c.374G→A — p.Ser125Asn — rs138722111 — Het — C>T — AF 0% — REVEL 0.331

ABCC9

c.*2121T→C — rs1032814479 — Het — A>G — AF 0.00929% — REVEL N/A

RARG

c.82G→A — p.Ala28Thr — rs147050100 — Het — C>T — AF 0% — REVEL 0.311

SLC22A11

c.746C→G — p.Ala249Gly — rs985289019 — Het — C>G — AF 0% — REVEL 0.319

GRIN2C

c.193C→T — p.Leu65Phe — rs78349823 — Het — G>A — AF 0.45% — REVEL 0.029

EP300

c.2773C→A — p.Pro925Thr — rs148884710 — Het — C>A — AF 0.399% — REVEL 0.289

TRIM24

c.2616C→G — p.Asp872Glu — rs61751967 — Het — C>G — AF 0% — REVEL 0.271

TAF3

c.2500G→A — p.Ala834Thr — rs150758246 — Het — G>A — AF 0% — REVEL 0.043

SIRT2

c.458G→A — p.Arg153His — rs144373891 — Het — C>T — AF 0% — REVEL 0.231

SLC16A3

c.601G→T — p.Val201Leu — rs372377440 — Het — G>T — AF 0% — REVEL 0.111

MED15

c.654_656dup — p.Gln218dup — rs374794651 — Het — C>CCAG — AF 0% — REVEL N/A

TBP

c.279_281del — p.Gln95del — rs752404282 — Het — ACAG>A — AF 0% — REVEL N/A

MT-ATP6

m.8860A→G (c.334A→G) — p.Thr112Ala — rs2001031 — Hom — A>G — AF N/A — REVEL N/A

MT-CYB

m.15326A→G (c.580A→G) — p.Thr194Ala — rs2853508 — Hom — A>G — AF N/A — REVEL N/A

No deletions or duplications detected using war_powers

It seems like it overlaps Dr. Power's PFS theory/fix, so I wanted to share. https://www.healthrising.org/blog/2023/10/02/efthymios-artificial-intelligence-chronic-fatigue-syndrome-recovery/

Hey all, 9 month PSSD sufferer here from duloxetine/wellbutrin.

When this event started back in January, I immediately knew something was wrong with my erections. They would take so much longer to form, they would deflate immediately once stimulation stopped, and they just didn't feel like I remembered.

Over the ensuing months, I noticed that even when I did get an erection, I couldn't press it like I used to be able to - grinding against my wife felt weird and uncomfortable, and frequently caused pain on the underside of my penis.

As this conditioned continued, I began getting a better understanding of what was wrong with my erections. Specifically, I learned that, during an erection, the underside of my penis, as well as the head of the penis, weren't hard the way that the sides of the penis were. They felt soft and squishy. The head, in particular, could be pressed into, like a marshmallow, with the tissue depressing until feeling some type of firmness deep inside.

These same structures of the penis (the underside and the head) no longer contain any erogenous feeling for me. I do maintain slight erogeny on the sides of the penis, and the skin just underneath the head. But the underside and head only have tactile sensation, nothing erogenous.

I have since learned that this is called "soft glans syndrome", or "glands insufficiency / failure to initiate."

[i originally had a labeled diagram here but it was removed by the mods]

​For visual reference, in the picture above, I am speaking of the area labeled "corpus spongiosum", as well as the glans (not labeled, but is the "head" of the penis). The "corpus cavernosa", meanwhile, make up most of the erectile tissue along the upper/sides of the shaft. For me, these become firm and provide most of the rigidity of the erection.

During an erection, the corpus spongiosum and glans do feel warm to me, so my hypothesis is that blood is flowing through these areas, but is not being trapped for whatever reason.

Although I'm describing male anatomy here, I do wonder whether an analogous disruption of genital arousal/engorgement could contribute to the loss of clitoral erogenous sensation or engorgement reported by some women with PSSD.

I've scoured the depths of the internet on this condition, and it is frequently mentioned in both the PFS and PSSD subreddits, so I'm assuming it's part of this horrible condition we have. Over time, I've come across one reddit user in particular named Top_Designer_8790. He has frequently posted in the PSSD subreddit about this issue. He's caught my attention because he is extremely articulate and has clearly spent an enormous amount of time researching this condition; he's suffered from it himself over the past 5 years and has trialed many treatments. His posts/comments just have a heightened level of sophistication, comparable to Dr. Powers' posts IMO. Unfortunately, he seems to have not been on reddit the past couple months, so my messages to him and attempts to get him to join Powers' reddit and the discord group have not been successful.

Personally, I also find his story interesting because it overlaps extremely well with mine (his and my other symptoms include tinnitus, anhedonia, and a complete inability to feel tired). But I know that's not true for everyone.

I mention him because I wanted to share some of his ideas/experiences. First, he separates sexual function into three layers:

1. libido - mental desire; the wanting of sex; sexual thoughts/horniness
2. sexual arousal - the feeling of becoming sexually aroused in response to sexual thoughts
3. erectile/neurovascular mechanics - the actual engorgement

I think we as a community tend to lump all of these things together as "libido", which is a mistake. He writes about having libido, but it's not triggering the sexual arousal process that leads to engorgement. I think I am the same. Although I feel "asexual", I still think about sex, I still find the same physical traits on women attractive that I always have, but the difference now is that those thoughts/visual sightings no longer trigger an immediate arousal and engorgement process like they used to (either at all, or heavily delayed). Thus, the disconnect between libido and nothing else happening past that point leads us all to feel like our sexuality has been deleted.

Notably, he's trialed many different treatments over the years, with success from four in particular. (Note: to be clear, I'm not recommending that anyone try these drugs/supplements based on one person's Reddit history; I think we all know by now that what helps one person can severely hurt someone else.)

1. Cabergoline gave him a window within an hour, which restored his glans sensation, normal engorgement, normal erectile reflex, and dramatically improved sexual function. However, it faded within a day, and later doses did not reproduce the effect but rather produced severe insomnia, anhedonia, and worsening sexual function.
2. L-histidine gave him a dramatic window after 30-40 minutes with similar benefits as cabergoline. However, it also faded, and also could not be reproduced.
3. He also describes a combination of "clomiphene, growth hormone, Tongkat Ali, ashwagandha, magnesium, arachidonic acid, and GABA", which gave him an entire month-long window where his soft glans disappeared, morning erections became strong, libido/arousal was intense, and sexual function normalized. Obviously this one is flawed a bit since there's so many variables involved, and we know now that some of those listed (ashwagandha in particular) can cause the problems that we all experience.
4. Finally, his most durable benefit came after using BPC-157, which he injected for 18 days. The broader window eventually faded, but he says the restoration of sexual pleasure/orgasmic sensation did not; it remained even years later. His soft-glans/engorgement problem persisted, so in his telling BPC-157 permanently improved one component of his sexual dysfunction without fixing the neurovascular/engorgement component.

He has a lot of speculative ideas as to why these treatments worked while others he tried either did not or even made him worse (cerebrolysin, apormorphine, pramipexole, P5P, remotiv, hCG, TRT, trenbolone, masteron, boldenone, L-carnosine, melatonin). I don't know enough to pass judgment on whether his reasoning makes sense or not, as his arguments are of a level of analysis above my comprehension (same thing I experience reading most of Powers' comments, I have no idea wtf is going on lol). But his overarching idea seems to be that the underlying PSSD state impaired central neurotransmission controlling sexual arousal, especially dopamine signaling in the hypothalamus/MPOA. He's careful to say that it is not about the amount of neurotransmitters themselves, but rather the signaling. Notably, he mentions GABA frequently, which Dr. Powers seems to have been leaning into more as of late. His last few posts before he went dormant on reddit also seemed to be leaning into gut theory models, but after being traumatized by PoopPush's discord messages over the last month, I'm choosing to overlook wherever that was headed.

Of special note to me, Top_Designer_8790 has noted that, during his windows, not only did his sexual functioning return to normal, but his tinnitus disappeared and his sleep normalized. That is especially inspiring to me, as my tinnitus currently serves as a second type of trauma I have to live with each day. If whatever is driving this eventually proves treatable in a way that improves both my PSSD and tinnitus, I think I would be the most grateful/appreciative person to have ever existed.

With all that shared, my main reason for posting this was to inquire with all of the PSSD/PFS patients and sufferers here. For those of you with PSSD/PFS who experience erectile dysfunction: does your erection look/feel like what I'm describing? Specifically, do the corpora cavernosa become reasonably firm while the underside/corpus spongiosum and glans remain disproportionately soft? I wonder if this is a defining characteristic of our sexual dysfunction, and maybe most sufferers just don't have the terminology to describe exactly what is wrong with their erections. I'm hopeful this post may be educationally helpful in that way.

I apologize for the length of this writing, I did not want to use AI in composing it, and I can be a bit over-explanatory. Thanks to anyone who read it and I'm curious to see if this resonated with others.