Thank you for sharing your story. As Henrique mentioned please don’t lose hope. We have world-class researchers working on PFS. There’s a study going on in Germany looking more into the androgen receptor and epigenetics like you have read into. There’s also a genome study that we are currently fundraising for. You can read about it at:
Please stay strong! We are all in this together.
Donate to pfs network monthly ask family friends to do same. Atleast 100 dollar a month.
Research is progressing.
HOPEQさん、こんにちは！
まさか日本の方と会えるとは！恥ずかしながら私の英語力はお粗末なもので…。おすすめ紹介ありがとうございます🙇 アドバイスもありがとうございます。
ともかく本当に困りました😥 とても現実の事とは思えないです。ついさっきまでここにあった私の人生が、わけもわからないうちにもう永遠の彼方へ失われたなんて… そしてそれよりも先に目の間の耐え難い身体的苦痛に私は負けそうです… 希望は捨てたくないですが…
かなり調べてPFSの理解に努めました。昨日私にプロペシアを処方した大学病院の内分泌科を受診して、分かったことをお伝えしてホルモンの追加の検査と協力をお願いしてきました。先生はPFSの論文群も確認したいということでしたので、全部お渡ししてきたした。もちろん治療法などは遠い未来のことでしょうが、少なくともそこの大学病院ではたぶんもうプロペシアは処方は控えられると思います。私は次なる犠牲者をたくさん救えたとは思いますから、きっと天国に行けるでしょう。まあもともと善行を積んできた自負はありますが笑😂
それはともかく、HOPEQさんにはもし良ければいろいろ経験を教えていてだきたいのですが…。どうでしょうか？でもこちらのフォーラムは連絡先の交換は禁止なのでしょうかね？
Aki
hi, Toughluck24, thank you for your encourage.
I hasitate to say that I can not send money. Now, I am extremely poor…to tell the truth, I have no job because I got terrible accident 8 years ago and heavy aftereffects…what’s more this nightmare😱 I am so sorry.
I will do what I can instead. I learned a lot and tried to understand PFS. Yesterday, I visited the endocrinology department at the university hospital that prescribed Propecia for me, and I told them what I found out, i.e. what roughly is happened and why PFS is hard to cure, and asked them for additional hormone testing and cooperation. The professor voluntary wanted to read the PFS papers, so I handed them all over. Of course, it is probably in the distant future that treatments will be established, but at least the university hospital will probably no longer prescribe Propecia, at least without strong warning of PFS. I think I saved a lot of the next victims, so I’m sure I’ll go to heaven. Well, I am proud that I have always done good deeds 
I will look for good treatments with doctors of the hospital.
If donations are too difficult, maybe consider telling your story on the Moral Medicine youtube channel which some of our members have made. Awareness is very important.
Great to hear the endocrinologist is interested in reading the papers at least. We have to do everything we can to convince the medical community.
Yes, if you cannot donate we’d love to have you share your story on our youtube channel @aki
你好日本朋友，我的情况跟你相似，现在一个多月了仍在受苦中，性欲和勃起方面已经完全恢复了，在第一次车祸后恢复得很快，然后就停滞不前，快感丧失、焦虑、抑郁一直来来去去
Kinda suggests that if T levels are brought down then the drug removed recovery would be easier?
6 months update
Unfortunately, most of my symptoms have hardly or never improved. Sorry for my poor English.
○IMPROVED
Brain fog and lost of emotion: recovered, of course not perfectly but 90〜98% within one month and a half after the crash. At first, it was difficult for me to read a single line in a book, and even when I watched a moving movie, I couldn’t feel any emotional movement in my heart. Now I can read books without much trouble, and I can normally experience heightened emotions when watching movies or sports.
Gynecomastia: has been improving very very slowly and slightly, but continuously and steadly. Unfortunately, I can not say when the improving started. Now, when I touch my breasts, I can feel the hardness of my pectoral muscles beneath the gynecomastia’s breast fat. But, it will take much more time to recover 100%. (My question is why my gynecomastia is improving. I speculate, what brings gynecomastia cured may be DHT and AR-function. At least, these are working for forming man-like-body. But other symptoms have no improvement.)
Testicular Pain: had stopped at the end of last year. But it brings no change in my sexual symptoms.
●NOT IMPROVED
Sexual symptoms: have no improvement. No morning/spontaneous/nocturnal wood, No sexual desire/libido, very reduced ejaculate, and so on.
Vitality and Motivation: are very low. I still
can not stand up and restart my broken life.
Muscle Wastage/Weakness: has no improvement.
skin deterioration: I can not find any improvement concerning sebum secretion and colkagen.
Insomnia: Now, I sleep about 3〜4.5 hours. But,
there was a period during which I was able to sleep a lot. I was so sleepy that I couldn’t wake up even if I wanted to, and I slept until around noon every day. During the time, I was trying no salt diet. In my opinion, very low blood pressure caused by low-sodium brought about it. If you want to have many hours’ sleep, you can try no salt=sodium diet.
・other
During this period, I didn’t do anything special except one unique diet, that is, avoiding salt=sodium thoroughly ( I tried it for three months, September 〜 December). This idea focuses on the fact that androgen-receptor has the function of vasodilation. Considering the critical importance of the vascular network in the biological system, which accesses all cells, I thought there might be scope to utilize the role of androgen-receptor in expanding and contracting blood vessels to construct a rehabilitation-program that promotes the functional recovery of androgen-receptor. In fact, I can not find any obvious results/fruits. I can not answer whether it contributed to my recovery in Brain fog and lost of emotion or not.
Now, at last, I have realized all self efforts are vain and what I can do is only to wait and pray for good luck. In other words, IN MY OPINION, it seems that we do not need to do anything, other than just waiting. Perhaps, the best and fastest way to recover, if it would really be possible, is to do thoroughly nothing and keep our body peace and calm so as not to hinder our body’s repairing process. And I do hope that scientists will save our lives.
果報は寝て待て。
hey guys
I’ve noticed that even when I eat and drink excessively, I don’t gain weight.It is very strange. And it seems to me that it’s like diabetes, where insulin doesn’t work and sugar/glucose can’t be taken into cells.
Could you tell me about the risks of diabetes? Do people with PFS ever actually have diabetes?
It seems like there are some that keep losing weight (probably because they can’t retain muscle), and other are gaining a lot.
Personally, I have to really focus on eating in order to gain weight.
I haven’t heard about people developing diabetes as a side effect of PFS though.
My bloodwork has indicated prediabetes since PFS. Never had an issue with it before.
Diabetes is mentioned in many articles. Quite a few have insulin resistance and Diabetes like symptoms it’s unlikely it shows in bloods because of the epigenetic changes. Same hoes for all the symptoms of Androgen deprivation despite having good numbers
Thank you for your comments, M_C, mstone, LazarusRy.
I am a recruit, and you veterans are always my reliance in this war.
As you know, diabetes is disastrous disease. It is serious issue. I am really anxious about it.
Humm… So, on one hand in fact quite a few have insulin resistance and Diabetes like symptoms, but blood test can not or not precisely find and show the abnormality,
on the other hand however in this forum you haven’t heard about people developing diabetes as a side effect of PFS, although there may be a couple of exception-cases.
is this understanding about facts correct?
I think, if some patients in this forum were suffering from diabetes, there would be many references to it in Member stories or other discussions. If not so, patients may be not developing diabetes. However, in fact, I don’t gain weight oddly. if some of patients have Diabetes like symptoms, It looks like it’s just lurking…
(pardon me for posting the same question in more than one thread.)
I have a scientific question.
Does “up-regulated or down-regulated genes” mean directly “epigenetic-modifications(Methylation, histone-modification etc)” ? Altered genes expression and epigenetic-modification are completely the same thing?
According to the researches, finasteride brings out thousands of alterations of gene expressions (upregulated or downregulated) in brain and body. So, does it mean that finasteride caused thousands of epigenetic-modifications?
on the other hand, we have the theory that what causes pfs is some epigenetic-modifications which make AR-function distorted and useless. I understand it is the cause of pfs. I don’t know how many epigenetic-modifications contribute to AR-dysfunction. But, it must be not so many.
Then, do the researches reveal that besides epigenetical AR-dysfunction we have “other additional” thousands of epigenetical dysfunction? Is it truth? I feel something strange… If that so, we have not only one problem(AR-dysfunction) but also thousands of problems…
Anyone, could you teach me?
9 months short update
What’s new in last 3 months.
◯ POSITIVE
・sebum secretion came back a little. (Of course not enough and it depends on the day) Running my fingers over forehead, I can visually confirm slight oil twinkling.
● NEGATIVE
・Insomnia is very hard. I can sleep only 2〜3 hours everyday. Sometimes only 1 hour.lol Just bearing…
・Gynecomastia’s improving is at a standstill…
・Hair has transformed very thin and limp in whole. (PFS HAIR)
・wrinkled skin got worse. especially skin of hands and arms.
Things aren’t looking good… I heard some people get new symptoms and become serious with time. I fear it.
But, an improvement of sebum secretion should be positive sign. I’ll continue to just wait and pray for improvement.
1 year update. pardon for my poor English.
Let me state the conclusion first: Regrettably, no improvement. In fact, it has gradually got worse. And I have a question.
For this 12 months, I have been just waiting for natural improvements. I did basically nothing special to cure pfs, because it seems to me impossible to cure this destructive, astronomically complex, and structual damages, besides by the body, life system itself.
6 months ago, I experienced morning wood three times. It had been completely lost since I got pfs. So, I thought it would be the beginning of the first (limited) improvement. But, unfortunately, it was not. I have never experienced any morning wood since then. My libido has been completely zero. Semen has been precious little.
Insomnia keeps the wrost level.
And my skin has become very wrinkled and creaded.
My only improvement is sebum secretion. It comes back a little.
Judging at the moment, my pfs is one of the wrost cases. I am really sad and disappointed.
By the way, I have a question.
Now, I have a lot of hair loss everyday. It had been stopped for about 5 months since I got pfs. Then it restarted and now it is increasing.
So, I thought it might be a sign of recovery. “Is hair loss is the sign of the recovery?” may be a classic question.
Unfortunately, according to the testimonies of people, it is NOT. People say: despite of restart of hair loss, their other symptoms have never been improved.
Umm… Okey. In fact, as for me, there is no improvement. But, I have a question as follow.
Even though hair loss does not meen the sign of recovery, it is surely a change of the state. And thinking it simply, it is rational to think that hair loss reflects a certain degree of restoration of androgen signal in hair related cells. It should be the most simple interpretation. Don’t you think so? This is my first question. The same thing can be said about sebum secretion. Because sebum secretion also had lost and then came back. It should reflect a certain degree of restoration of androgen signal. I think this in itself can be viewed positively. --On the other hand, sexual dysfunction, insomnia, and collapse of skin etc, these symptoms have never been improved.
So, there seems to be a gap between the (estimated) restoration of androgen signal and a realization of recovery from (other) pfs symptoms. How can we interpret and explain this gap? This is my second question.
Simply put, PFS is not necessarily just an androgen signal disorder, but also a disorder of other biological signals. (Its detailed mechanism is not the matter.) This may be the reason why in some cases other symptoms such as sexual dysfunction do not recover proportionately, even though sebum secretion and hair loss have returned. If we assume that PFS is a multiple biological signal disorder caused by violent manipulation of 5 alpha reductase, we can well explain the characteristics of PFS, which has a common pattern of onset, although symptoms and recovery vary widely.
Some patients have no sexual dysfunction, others have no mental symptoms, so this strange disease has no essential core symptoms. (I think this odd characteristic must be extremely significant point. I have never heard of such a disease that has no essential core symptoms. We should think deeply about the meaning of this oddity.) But all biological signal disorder might be caused by the same simple way, that is, strong interference in biological signal. Of course its detailed molecular biological mechanism is uncovered, or rather occult, but it is not the matter. So to speak, we were struck by lightning and the elaborate circuit of our bodies were burnt out.
cf. Two-hit hypothesis
What do you think about it?
While you might not feel better from balding I’d take it as a welcomed sign of things beginning to work properly. I have yet to lose any hair since quitting a year ago.
I also agree about the oddity of PFS. The fact that no one case is the same scares me even more. How is this possible?
In our body, innumerable kinds of biological signal operate in various ways and levels and sustain our life system and its homeostasis. Such signals work under a perfect harmony.
Depriving of 5α-reductase must be violent and destructive interference in the whole system and its harmony. Because 5α-redactase plays multiple fundamental roles in our body and has a great impact on the whole system through its homeostasis. So, the intervention definitely puts a vast burden on the system and harmony and brings huge distortion to its whole operation. Of course, our system has a flexibility to certain degree to keep its functions. But, there must be a limit. When the burden goes beyond the limit of endurance, the micro-structures which sustain various biological signals gets terribly deformed and loses their functions. Such destructions may occur everywhere both in the brain and the body and at randum. Because our biological signaling system has a flexibility and its limitation and therefore all abnormal strong interference with biological signal can cause such destortion of structure.
If that so, there is no specific mechanism which causes pfs. Because if pfs had a core and key mechanism as the etiology of pfs, there should be a core and essential symptom which is directly brought about by the mechanism. Indeed the list of symtoms is limited and some of them are very popular, but we can not identify any symtom as such essential common symptom. Some patients never have sexual disorder, and others never experience insomnia. So, it seems to be simply damages of fundamental structure of our system. The only reason of its severity may be the fundamentality and cruciality of 5α-reductase. In this case, only the method of destruction, that is to say, depriving of 5AR is common. When we fire a shotgun at someone, no one knows in which the shot hits him.
In my opinion, this is pfs observed from a functional point of view and this is the reason why no one case is the same, despite of the same attack.
