9 months Chinese PFS suffer's story, do I have chance to recover from this hell?

Member Stories
#1

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)?
China, Beijing
How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)
Google
What is your current age, height, weight?
23, 173cm, 77kg
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
finasteride
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1mg daily
What condition was being treated with the drug?
hair loss
For how long did you take the drug (weeks/months/years)?
over 1 year
How old were you, and WHEN (date) did you start the drug?
21, 2019.04
How old were you when you quit, and WHEN (date) did you quit?
23, first quit on 2020.06, recovered without problem, then restart on 2020.08 for two weeks, haven’t recovered yet and crashed on 2021.02.
How did you quit (cold turkey or taper off)?
cold turkey
How long into your usage did you notice the onset of side effects?
the first pill
What side effects did you experience that have yet to resolve since discontinuation?
majorly sexual, mental and physical sides were mitigated considerably by hcg+clomid
Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[x] Loss of Libido / Sex Drive
[x] Erectile Dysfunction
[ ] Complete Impotence
[x] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[x] Reduced Ejaculate
[x] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[x] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[ ] Confusion
[x] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[x] Extreme Anxiety / Panic Attacks
[x] Severe Depression / Melancholy
[x] Suicidal Thoughts

Physical
[x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[x] Testicular Pain
[x] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease
[x] Weight Gain
[x] Gynecomastia (male breasts)
[ ] Muscle Wastage
[x] Muscle Weakness
[x] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[x] Prostate pain
[x] Persistent Fatigue / Exhaustion
[x] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[x] Other (please explain)
Muscle twitching
shrunken Adam’s apple
sleep apnea
insomnia
abnormal heart pumpin

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
hcg+clomid+AI from last month, countless supplements.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?
2021.02.22 when I crashed:
T: 9.64 nmol/L
LH and FSH around 5
E2: 163nmol/L
CK(creatine Kinase): 567U/L (38-174)

2021.03.26 6days after clomid:
T: 4.07ng/ml
LH: 12+ FSH: 14+
E2: 24 pg/ml

2021.04.10 and 4.12 2 weeks after hcg+clomid+AI (I took it twice since I required to measure my DHT level and CAG repetition from a private lab)
T: 22.94 nmol/L
SHBG: 10.3 nmol/L (11.9-57.7)
Free-T: 48.3 pg/ml (15-50)
DHT: 1448.53 pg/ml (250-990)
DHEA-S: 876 ug/dl (85-690)
Anti-mullerian hormone: 16.87ng/ml (0.73-16.05)
LH: 35+ FSH: 28+
E2: 20 pg/ml
CAG repetition: 27 (in normal range but can be explained as insensitive to androgen)

2021.04.27 4 weeks after hcg+clomid (I stopped AI since E2 was under control last time)
T: 6.56 ng/ml
E2: 37 pg/ml
LH: 37+ FSH: 27+
CK(creatine Kinase): 187 U/L (24-195)

2021.05.14 only on hcg and a little AI
T: 7.65 ng/ml (1.75-7.81)
E2: 49 pg/ml (<39)
LH: 22+ FSH: 16+
Cortisol: 22.8 (4-22.3)
FT3: 3.64 (1.8-4.1)
FT4: 1.44 (0.81-1.89)
TSH: 0.912 (0.38-4.34)

my PRL are always fine so I just didn’t mention it.

Anything not listed in the above questions you’d like to share about your experience?
None
Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

First of all, please forgive me about my English, it is not my first language, secondly, to make sure my story is credible, I use my real name as this forum’s user name.

before fin, I was a very health young man, relatively strong and in good shape, since I used to be a soccer player. Also, I was really sexual active, I started my sex life when I was in middle school and never stop it since high school until my crash, I used to be a beast on the bed and can satisfy a women multiple times without any problem, but it all destroyed by fin.

unlike other guy in this forum, I do my research and know pfs before I tried fin, but just because I cann’t accept going bald in my early 20’s, and my doctor promised me that the side affects are very rare and will go away if you continue using it. It made me finally to give this poison a shot on 2019.04.

I feel the decreasing libido and harder to achieve an full erection after the first pill, but trust in what my doctor has said, I believe this side effects will fade away, and since that time I still have regular sex with my partner and some random affair when traveling, I really hadn’t take these minor side effects seriously. in 2019.07, I broke up with my partner and start some random hookups, I had sex with 3 new partners from 2019.07 to 2019.11, since then every time before sex I will need a long time blow job from my partner to get me full up, it is awkward, but the sex were still always successful. The first no show happened in 2019.11, when I met a new partner and decided to develope a long term relationship with her, the first time we have sex I just cann’t get it up, this really freak me out, we stopped trying and fell asleep together, I got a rock hard nocturnal erection then, and we had a great sex that night, after that our sex were just so awesome and so enjoyable, we even can have sex five times in a whole day, so that I just forget that no show alert immediately.

I first ceased drug in 2020.06, when a day that I realize I almost have no libido at all, after discontinued with fin for two weeks, I feel I recover to my old self fully, extremely horny and just want to have sex every day every time. I went for a road trip with my another lover in 2020.07, that was the happiest time I have had since fin started, and I fucked her 7 times in first 3 days until her pussy got hurt by me, I even got arouse by her body note when we were driving, then we parked our car and made love on the vast inner Mongolia prairie(sorry to be so specific), right now I am just asexual like a eunuch, so every time when I recall those memory from last July, recall that how energetic how happy I was, I feel so sad and lose, since being normal is that good, but I just cann’t and far away from normal.

the recover is so good, but my hair started falling rapidly again soon after I ceased drug, due to my obsession about my hair, I decided to give fin another try, maybe the second time I will be tolerant to those sides? how stupid I was! this maybe the worst decision I have ever made and I regret it everyday right now, I restart fin in 2020.08, soon all the sides come back, I feel I am enough for this, so I shaved my head and ceased it two weeks later, but it is too late.

During 2020.08-2020.10, I feel normal and stable, I still have regular sex with my partner and date with other girls, just the libido was still low, I thought maybe this time the recover just need more time, but after 2020.11, firstly I can hardly fell asleep, and then I woke up with a start several times and just feel I cann’t breath, also I feel my libido start fading away, I have no motivation to date with new girls, and I kept my relationship till 2021.01 with my partner and we broke up, in 2021.01 I noticed that if it is not my partner initiate the sex, I almost forget about it. in 2021.02, I tired to have sex with some new girls but that was the time I realized sth is really wrong for me, the first time I just cann’t get it up even my mind want me to fuck her, the second time I was in bed with two pretty twins, and we have sex for more than an hour but I just cann’t feel anything and cann’t reach orgasm, I went soft twice. After that I feel extremely anxiety and I just cann’t believe that pfs can happen upon me. And so many terrible symptoms started after that, such as muscle twitching, insomnia, abnormal heart pumping, panic attack, depression and suicidal thoughts, I tried to seek medical help after that nightmare.

I will update my medical experience in the next page since this is already to long.

3 Likes
#2

Sorry to hear your story. Have you started to take HCG and Clomid? Had that affected your symptoms?

#3

I started seeking medical help in 2021.02. In China, there is almost no awareness about PFS, only uncountable advertisements about finasteride. The first doctor didn’t believe that the side affects of Propecia can last that long, he only let me do the blood test and then give me testosterone and some herbs, it only made me worse, I feel my tests are going to retract inside of my body after a few dose of testosterone, and I felt much harder to achieve a full erection after testosterone. The second time I met him and told him that testosterone made me worse, he just thought that I am paranoid and prescribed me SSRI, of course I refused it and never go back to this shit doctor anymore. At the end of 2021.03, I made an appointment with the best doctor in andrology in China, at first he also didn’t believe it is PFS, but he is nice and willing to talk with patients, after I gave some literature review of PFS and a long talk he promised me he will study on it. the first time we meet he prescribed me clomid, and the second time he ordered a doppler ultrasound for me and compared to mine another result which is one month before, after confirming that my tests are already relatively small but still reducing in size, he immediately put me on hcg injection for 8 weeks, he said I can still stay on clomid during the hcg session, the third time we met really touched me, he said those weeks he collected 39 the newest studies about PFS, and he also organized a group wish to do some study on me, right now his team are making a full DNA sequencing on me, and he also said he started oral finasteride by himself, he said he is already old and do not care about the side effects, since he will prescribe finasteride to those old patients with prostate problem, he believe he should be more responsible by experience fina by his ownself and he believe it will help his team’s study. right now I am keep contacting with this doctor, and hcg and clomid actually relieved a lot of symptoms on me, majorly mental and physical, but the sexual sides still remianed. I will update that side effects chart:

Sexual
[x] Loss of Libido / Sex Drive
[x] Erectile Dysfunction
[ ] Complete Impotence
[half recovered] Loss of Morning Erections
[x] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[recovered] Reduced Ejaculate
[recovered] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[x] Emotional Blunting / Emotionally Flat
[better] Difficulty Focusing / Concentrating
[ ] Confusion
[better] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[better] Extreme Anxiety / Panic Attacks
[better] Severe Depression / Melancholy
[better] Suicidal Thoughts

Physical
[x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[recovered] Testicular Pain
[improved but still smaller than pre-fin] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease
[ ] Weight Gain
[minor] Gynecomastia (male breasts)
[ ] Muscle Wastage
[better] Muscle Weakness
[recovered] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[recovered] Prostate pain
[better] Persistent Fatigue / Exhaustion
[better] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[X] Other (please explain)
Muscle twitching (almost recovered)
shrunken Adam’s apple (still small)
sleep apnea (recovered)
insomnia (recovered)
abnormal heart pumpin (almost recovered)

So I actually made a huge progress with hcg+clomid treatment, but some essential sexual sides still remain and I really care or even be obsessed on these sides very much, which is medium level ED, almost no libido and no motivation and emotional blunting due to the ridiculously low libido. And also my tests size increased a little bit from hcg+clomid treatment, but still smaller than pre-fin, at worst (the end of March) they are both 11ml, only 50-60%of my pre-fin size, and one month after hcg+clomid they are both 13ml+, which may be 60-70% of my pre-fin size. I will do another ultrasound recently. And I don’t think my penis is shrunk, but it still looks dark, lifeless and a vein is abnormally obvious.

5 Likes
#4

Thanks again for sharing.

#5

You have had a real stunning pre fin Sex live. Congratulations! And after fin, you have developed the typicall pfs problems?

Super interesting ist, that your doctor ist going to sequenzize your genome. He should connect a university to get an Science Enterprise Project. Search for more sufferers an trying to treat you with Gentherapie and Crisper…

#6

Several members here have improved by taking bupropion for motivation and libido. Several have improved but a few have gotten worse they feel. Might be worth a shot as it’s non-hormonal and isn’t an SSRI.

#7

Thanks for your advice, I have tried buspirone before, it helps with my anxiety but did nothing for my sexual sides, bupropion seems is a very controversial med since seems like somebody get good result but somebody feels terrible, I am still hesitated if I will give it a try. I just brought some GHB from HongKong, I will give it a try first since I have seen some members seems like improved significantly by using it, for example one of the most famous recover story by Chi.

2 Likes
#8

Thanks for your reply, my doctor works for the best hospital in China, which is affiliated to the best Medical college in China, so it seems like the study on me is already a Science Project, but he also told me it is only a try, maybe they cann’t find anything, maybe although they find something special but there isn’t targeted treatment available.

2 Likes
#9

Welcome to our forum!

I am deeply sorry that you have been hit hard by persistent symptoms from Finasteride treatment. Here you’ll find many people who can relate to your problems.

Unfortunately, what we call Post-Finasteride Syndrome is still widely unacknowledged by the scientific and medical community, which means, as you have experienced, that people contemplating treatment with Finasteride are often misinformed by doctors who claim that the symptoms will resolve after treatment is ended. Accordingly, an important mission of this community is to spread awareness about this condition among doctors, the authorities, scientists and potential consumers of Finasteride. This is something, we need everybody to help with:

We have recently launched a series of YouTube videos (https://www.youtube.com/channel/UCQXyXbJNqxzjEhPp5RVI88A) with patient stories and an explainer video. We need everyone to like, share, subscribe and comment as visibility on social media is largely dependent on interactions.

We are always looking forward to volunteers to share their story in form of a video or as part of a podcast series that we are going to start. Check here for more info: RARE DISEASE DAY 2021: Announcing PFSNetwork.org, a watershed moment for PFS awareness. PLEASE READ AND SHARE

Additionally, we ask all users to report their experience with the drug to the authorities. Reports of (persistent) side effects have in the past lead to amendments of leaflets in several countries. This is a cheap and important way to raise awareness among the authorities. Please check here for additional information: https://www.propeciahelp.com/report-your-propecia-side-effects-to-drug-regulatory-agencies/

It’s good that your condition is checked by some good doctors and please report what they find. It is likely, though, that to find clear differences that make us (more) susceptible to this conditions than the many who do not experience any (persistent) side effects, we may have to look at a larger population of affected patients and compare them to a control group. Hence, the staff of this forum is working on initiating several clinical and other studies to find out more about our conditions. These projects are not yet finalized, but if we succeed we will need help from the community in recruiting participants and with donations. So, stay tuned!

Finally, a major problem is the fact that the full symptomatology of this condition is not yet fully appreciated even by doctors and scientists who acknowledge the existence of PFS. Hence, we have created a very detailed survey to create systematic data across all symptoms that have ever been reported on this forum. The data is used to inform our discussions with scientists, may help with identifying particularly severe cases of this condition for future studies and will hopefully be published in a science journal. Please consider participation: Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate

Unfortunately, for many of us this condition appears to be permanent (I have been suffering for 14 years now) as long as we do not find a treatment. I cannot promise that we will ever find one, but we are quite confident that there are low hanging fruits that we can take that will significantly increase awareness and understanding of this condition. To do that we need everyone’s help!

Thank you and good luck,
N.

#10

The first thing u need to do is to take the survey here, then u can try those homebrew treatments which have already been tried here for decades.

#11

Hi, thanks for your reply, during this 14 years is there any improvement for you? can you still have sex life and maintain a relationship.

#12

I had improvements initially and was very stable for over a decade. Unfortunately, I had a new crash in 2018, I am not sure what the trigger was. Now my condition is worse and not improving. Sex is difficult, but often works with Cialis and I can maintain a relationship. Although, I have to say I am very lucky to have a loyal girlfriend and we got together before my second crash when my performance level was much higher.

My impression is that most people improve at least somewhat during the first two years.

#13

Hi, I wish to share my mental journey after I crashed. I actually feel really lucky and grateful toward my 23 years’ life if I haven’t touch fin, I have so many awesome friends and so many cherishable experiences and memories, my parents offered me the best life and opportunities, I am handsome and smart, at least above average, my family are even planning immigrate to New Zealand recently, life seems keep going in a good direction and everything is wonderful, but I screwed it all up just by some fin pills, for a sake of vanity: my obsession on my hair. So when I crashed in 2021.02, I feel so shock, sad, desperate and regret, I cann’t stop from thinking killing myself everyday, this situation continue for at least a month.

But after I calm down, be rational and contemplating, I realize if the moksa really exist, and I can have another chance in a different life after suicide, it is highly possible that I won’t born as lucky as this life, I still miss my awesome friends, I cann’t leave my mom in this world alone, and I still cherish this 23 years’ wonderful experience and warm memories… After that, the suicide thoughts never came in my mind again, I know that I should move on despite how tough the problem is, and made up my mind to fight PFS at my best.

After that I read plenty of member stories about recovery and significant improvement, such as:
Chi, Mens_Rea, 12345, StartingOver, JoeKool, John_Coleman, Mitch, Reason, anonymous1968, Finatruth, D11, pine909, mlevyholden, iwillrecover, Deadballs, searchfhealth, mrmoskowitz… and many others, I think I may can create a recovery compilation in an new thread.
so those gentlemens’ story really give hopes that a lot of us can improve with time, and as I am still in this early stage I should stay optimistic and expecting a recovery no matter via medical or natural.

So I just set a clear plan, I will give my body 3 years (from 2020.08 when I ceased drug) to recover naturally or with some medical assist, hope before 2023.08 everything will be fine. But if there is no significant improvements until 2023.08, I will just take a penile implant surgery to make sure I am always available for sex life, since my other sides are minor I am pretty sure PFS will be negligible if I get my sex life back. I just cann’t live without sex! I am the only child, my family divorced when I was very young, my parents love me, they are successful and prestigious in their career and offered me the best life, but they are busy so lack of accompany, so I start sex very early and since then, it became a major way that I can get some sense of belonging, security and warm. so even right now I actually have almost no libido, but I still miss the sense of intimacy from the sex.

#14

Thanks for sharing your experience, I am so glad to hear that you have a such wonderful girl friend, my best wishes for you.

#15

I have had the same wild live, broken by depressed Times and Times living by Mom again. For me the Finistarid shock was so drastic that I walked along the railways. Im 60 but without my Cock I dont feel Like a human being anymore. I don’t want to meet someone. I live in Isolation. Only my little daughter needs me. But what a Zombie Live with Out be a real man. So If you get your manhood with Recovery or in 3 Years with the Titan back, I find IT wonderful.

#16

Hi, Thanks for your reply, according to your age, if you only have sexual sides, penile implant will be a perfect choice.

#17

Please join the QQ group 826599709 to communicate

#18

Forgive me, I quit, that QQ group is so negative, some suffers seems already got some severe mental disorders, I just formed a new smaller Wechat group.

#19

10 months update, I am still stay on the protocol, 25 mg daily clomid for test boosting, 5mg daily tadalafil to treat my ED, buspirone for my anxiety, and I just start mesterolone by myself today. my current status is: mental sides manageable, only feel anxiety in the morning after I wake up, ED also manageable by daily tadalafil, I always get an 20 minus full erection before fall asleep, but I haven’t had any sex after my crash, I get a road trip appointment with my old lover this July, and she knows my current problems and is very understanding, maybe we will have a try this July. My most annoyed symptoms are still no libido, lack of motivation and shrunken balls, I tried GHB before, it improved my sleep from 6-7 hours to 8-9 hours, but did nothing for my libido, hope that mesterolone will help, if the mesterolone still not working, I will try growth hormone or bupropion next.

Best wishes to you all,
Hanru.

2 Likes
#20

Hi guys,

a brief update, my doctor and his team finished the entire human genome sequencing for me, and they find more than 2000 mutations, they wish they can find some mutations which maybe the cause of my symptoms, we will meet and have a discussing about this next week, with the whole team, hope that we can find something make sense and treatable. Hope is the most important stuff which supporting us keep up going on.

Best wishes,
Hanru.

2 Likes