Can PFS be passed on to our children?

General Discussion
#21

I wanted to share some good news for once. My wife and I have had a healthy baby boy. All appears normal in the genital area and general health is all good.

We conceived him about 1.3 years into my crash. We did have a mis-carriage prior to him but second time around he came no problem.

Hopefully this will put some minds at rest that we can conceive and we can have boys also. The act of sex itself was very difficult but with a good partner who is kind and patient its possible.

I just hope he will go on to be a healthy boy in all areas.

What do we know about the likelihood of PFS being past to him? Any info would be appreciated.

1 Like
#22

Did your testicles shrink from pfs?

#23

That is great news. Congrats!

#24

Thank you for sharing that great news!!! Congrats!!!

#25

Congratulations to you and your wife!

#26

If PFS is the result of a epigenetic change (which is possible but as of yet unconfirmed) then yes epigenetic change can be inherited. Keep a watchful eye on it and explain the situation to his pediatrican. For now though congratulations and of course we all here hope everything develops fine.

#27

I would think maybe the potential for being susceptable to 5-AR inhibitors maybe passed down but not the actual condition itself but we know very little. For instance I have PFS therefore I have told everyone in my family to avoid finasteride, durasteride and saw palmetto at all costs, due to the likihood that since I was so badly effected by it they might be as well.

#28

Two seperate issues, as I know you understand. Of course and by all means avoid all 5AR inhibitors at all costs. Awor has mentioned there is a definate genetic predispostion and there have been cases of sons and fathers who took 5AR inhibitors having PFS. Also, I have severe sides and my cousin has sides but not quite as bad. It’s pretty much a given at this point that it is very possible for him to have the same genetic predisposition for PFS. Seperately, it has been proven time and time again that epigenetic changes can be passed down, even for generations. So, if methylation or some epigenetics are at play here and if you can read between the lines you know that’s a strong possibility. A major institutition that Awor has lined up per his research thread to explore “epigenetic mechanisms of PFS” wouldnt be happening if they didn’t have very good reason to suspect it. Not trying to be negative but just something maybe annon should watch and let his doctors know about.

#29

Your cousin has PFS. And is he your cousin on your mom’s side or dad’s side?

#30

responded via PM to protect his anonymity

#31

Boston, can you tell me what you are suggesting in terms of monitoring your kid for PFS symptoms? I have a 4 year old son who was concieved via IVF post-fin (but before I knew I had PFS). FWIW in regards to the larger conversation, I had my semen analyzed many times and it passed with flying colors- mobility, motility, count. In terms of my son, he is very healthy and normal, has a normal sized penis, and even plays with himself and gives himself “erections” all the time (yes, even babies can get erections, according to the pediatrician). I’m concerned about this possibility of passing on epigenetic changes though, so I’d like to understand more about what you are suggesting. However, on the flip side, I find a bit alarmist and maybe a bit conspiracy theorist to suggest everything is so gloom and doom. For example, to suggest that people are maybe genetically pre-disposed to fin makes sense, but to suggest that PFS sufferers have their fertility affected is a real stretch in my opinion (and I know you didn’t suggest that- that is more about this thread in general).

Anyway, I’d like to hear more and decide for myself I guess. But it very, very disturbing to even theorize that our kids have inherited some of these problems. Oh, and lastly, I have a daughter too (4 years old also- twins), and she is pretty petite and super “feminine” -way more than my wife which we actually have joked about a lot. She is small (and my wife is actually broad shouldered and tall), with small hands and feet, and super “girly” in terms of personality, likes, dislikes, etc. So I suspect your daugther’s tallness, etc. is just what it is, and NOT related to PFS in any way.

#32

i have 1 daughter before I took any fin at all and she is healhy, tall and very girly
I have 2nd daughter when i came off fin first time (no crash) and she is tall, healthy, not as girly but likes dolls and cuddles
I have a son (2 weeks old) concevied 1.3 years into pfs. He appears healthy, big feet and long fingers. Penis and balls seem normal in size.

Make what you want of this. I hope my 2nd and 3rd children have not been effected by this. I cannot see any pfs realted concerns between my girls and my son is too soon to evaluate. I guess puberty will be when we no for sure.

#33

@nyer - We are in the early days of research and it has not yet been scientifically proven that some sort of epigenetic mechanism is at play here. But, it is suspected and very high level research institutions will soon be embarking on an epigenetics study of PFS. I do not think a study from this institution would be taking place unless there were very good reason to suspect some epigenetic mechanism was at least in part at play. Secondly, we do know that epigenetic changes are inheritable. This has been proven time and time again and with a quick use of google scholar all these studies are easily accessable. If it were me I think I’d want to at least speak with a pediatrician who specializes in andrology or an andrologist. That will likely be a challenge to explain PFS to them and how it could possibly relate to your child’s development so come prepared. It’s great that things are going fine with your son and of course we all hope that continues. But, it would be good to know what your options are in case you notice development doesn’t seem to be going normally at some point. We have had at least one report from one other parent that her male child seems sexually underdeveloped. As annon has pointed out, penis size is related to the amount of available androgens and sensitivity to those androgens during puberty. So, it may be too early to determine if all is fine at this point.

It’s not a stretch that there should be fertility concerns among PFS sufferers at all. Dr. Irwig is engaged in a study on this subject. Also I believe the user BrokenPecker has been tested and has fertility issues.

I definately understand this is a very difficult subject on many levels to consider, it’s almost horrific. It’s been hard for me to come to terms with as well. But, maybe it’s better to be as pragmatic as possible instead of just hoping for the best.

#34

so when you talk of epigenetics what do you refer to. Will he inheit my side effects such as numb penis, lack of sex drive etc, or could he simply not develope during pubperty?

#35

Some educational videos that were posted a while back on epigenetics - viewtopic.php?f=27&t=6193

How it could possibly effect the development of your son is a question better left to an andrologist or a pediatrician who has some background in sexual development abnormalities.

#36

I’m happy to say maybe I was wrong or a bit too gloomy on this subject. Things may not be so bleak IF it turns out epigenetics is at the core of our problem.

This research seems to indicate it is possible for some “epigenetic reprogramming” during the normal reproduction cycle in mice. —

bio.utsa.edu/news/utsa-research-confirms-epigenetic-reprogramming-occurs-naturally-in-mice/

Maybe someone with a stronger bio/medical background can better interpret this study and what it means for PFS victims and their offspring. Before driving yourself crazy bear in mind too, although it seems very possible/likely and we will know for sure soon in detail hopefully, we have yet to confirm 100% epigenetic chromatin changes in PFS sufferers at least to my knowledge.

Seems to be good news for us that there is this subset of epigenetic research going on studing these epimutations of children concieved with ART. Let’s hope we can learn something from it.

#37

my single biggest fear in all of this is that if someday i am lucky enough to be able to have a child, that i will pass this syndrome on to them

#38

Me too Lennon.

If there are no defects detected at birth, then you would really need to monitor the child as he/she approaches puberty.

For boys, you would need to watch out for things like Kallmann syndrome - a genetic condition which results in the failure or non-completion of puberty.
It is characterised by hypogonadism.
en.wikipedia.org/wiki/Kallmann_syndrome

#39

We are yet to establish if PFS is a permanant problem or if it triggers any genetic problems. I’d stay positive and worry about your own health for now. I do hope that this isn’t the case.

#40

Yes, we have established that. The studies published by Dr. Irwig establishes this is permanent. Scientific confirmation of that is a milestone for this community. We don’t know if its uncurable as research has just begun, but for now it’s permanent. I think you’re confusing permenant and uncurable. This might sound petty but there is a distinction that should be made between the two and we don’t want to confuse media, researchers, etc. as we move forward.