Advice needed for newbie PFS, Letrozol destroyed me. now in serious trouble, Pls help

#41

Had my first surge of libido yesterday since about a year. It lasted the afternoon. I was driving some longer route with my car and had spontaneous erections for quite long time when having erotic thoughts. I had totally forgotten how good it felt to have even some kind of libido!!
Althought the penis sensitivity is not there, it felt really nice. It would be so awesome to be better one day!But time will tell how this all is going to end up.

When i had the surge of libido, my overall condition was really good also. Felt energetic and mood was really great. I was interested about life and having that kinf of burn for life. That was freaking awesome to felt that even for a little while.

Some improvements in the start of the year. Sleep has gotten better, same as anxiety and suicidal which i dont really have anymore or they are now quite low. I have concentrated just for the gut and keeping my stress level as low as possible. Penis skin sensitivity is ruined still from the letrozol. I dont know if there is never going to be improvements because i think the nerves of the skin were damaged with the letrozol. Hard to say, time will tell more about.
Also body skin sensitivity has been quite ok now, its not sensitive but i dont notice that so much anymore. This all might be just temporary before back to previous baseline. But still hoping that someday, there might be some improvement that i could keep living my life.

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#42

That’s great you had an (albeit short lived) improvement @Finfina. I would suggest that you think about that improvement as a sign that you aren’t broken and that the mechanisms and systems can get back in line. Keep on going, things can get better.

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#43

Today exactly 1 year with PFS anniversary and also my 38 birthday cos I got PFS as a birthday present. So happy birthday to me! :birthday:

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#44

Sorry to hear it, but I hope you enjoy your day.

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#45

Happy birthday, hope you’re enjoying your day as best you can. It’s great to hear of the recent improvements you’ve had, they are something to be celebrated and encouraged by.

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#46

Update with new lab results:

Estradiol E2: 0.13 nmol/l (range 0.03-0.15)
E2 (sensitive): 0.11 nmol/l (range 0.03-015)
Testosterone free: 218 pmol/l (range 230-575)
Testosterone total: 16.0 nmol/l (range 10-38)
SHBG: 46 (range 14-71)
DHEA-S: 12.0 umol/l (range 2.5-16.0)
Progesterone: 1.8 nmol/l (range 0-3)
FSH: 9.1 U/l (range 2-10)

So the first thing that I really dont understand. Why my E2 never dropped when on Letrozol or afterwards? Letrozol should kill E2 with that dosing? Mine has just done the opposite whole the time. Before Letro 0.07. On Letro 0.08. After Letro 0.11. Now 0.13. So what the hell is that??

Something has happened to my testosterone levels cos they seem to be rising after a year. Total has been 11-13 for nearly a year and now its 16.0. Also free testo has rised over to 218. This has been 170-190 on all previous measures. But also SHBG seems to rise on a same ratio as total testo rises, so it eats up my free testo.

DHEA-S is on the upper range, anything to think about that?

Progesterone has dropped to the middle range! It was 3.7 on previous measure at 10/2018. I had a theory that progesterone is the key factor on my situation. That im in on some kind of progesterone dominance loop, 5AR not working and neurosteroids are not developed properly from progesterone. And so on… But now progesterone have dropped to the optimal range, so whats going on there?

FSH is on the high side. Can we figure something out of that?

Overall I have been better. Apparently the rised testosterone levels are affecting to my condition?Or the lowered progesterone? The nausea feeling that I had almost every day, I dont have that anymore. I have more energy and better mood and also interests to do things and more interest in life. I have also returned to my hobby, dealing with cars and repairing them. Sleep is also better, no drugs for sleep atm and i get maybe 7-8hrs sleep with 1-2 wakings for visiting the toilet. Skin on the whole body has been better also, I dont notice
the insensitivity anomore. Its not ”normal” but its ok.

Sexual sides havent got better. New symptom -> penile has shrinken which sucks so much but I dont care about the penis so much anymore, I feel that penis and the sex drive have been lost.
Most scaring symptom atm is the clicking joints.
Not much pain on them but clearly the clicking has increased and they have loosen. So that really really sucks. And also gut / digestion havent got better. Thats scary shit too. But still hanging in here!

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#47

Any comments/ideas, anyone?

I started L-Glutamine again after few week off and I think it lowers the penis sensitivity. Can it be?

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#48

do you think you are going through estrogen rebound? on letro it was 0.08 now 0.13 it’s like your body now requires more e2 or something… looks like it are you on letrozol at the moment?
I have condition developed from misuse of AI and whats interesting my FSH is on higher side of range just like yours (even though my hpta was working only for ~6 months at times of labs)

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#49

Yes i think its the E2 rebound. No im not on letro, stopped 5 months ago…

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#50

I think you should just let your body stabilize… worst thing some do is to go back on AI when they see their e2 is a bit higher than it used to be doing so can cause a syndrome me and gents93 as well as Konflict, Senberg and few others have
my e2 went high after ceasing AI and eventually dropped too low after rebound…

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#51

Yes I know, I will never ever touch an AI again, thats for sure. But still I dont really understand why it never dropped my E2 at all? Just the opposite. But my testo levels responded really effective on that ”poison”.

And also what came to my mind are few labs from 11/2018. My IGF-1 was of the scale at 54,3 nmol/l (range 11-35)! And GrowthHormone was at the low end 0,28 ug/l (range 0-3).
That just doesnt make any sense???

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#52

Having difficult times after longer good section.
This time anhedonia and penis sensitivity are the worst issues. So penis sensitivity has been really low. 3 week ago i had marked to my calender there were two masturbate sessions with sensitivity 7/10, at two days a row. But now that proggess is all gone. I thought allready that maybe I have got some progress here. But fuck that, its PFS. You never know when is the last time that you will ever ejaculate. Is it now or will this fluctuate to the better direction again as it has done before. This disease really sucks.

Also fighting for my job because have been on a longer sickleave and now when I would like to go back to work, my doctor sais im not ok yet to come to work. And my boss also sais the same. I think they are just going to try to get rid of me. So fuck them. I’ll find another job if I can. It would not be easy in this condition but have to try because of my family. And also fighting to keep my family together. The wreck is not so far away either.

Better have been fatigue, sleep is ok without drugs about 6hrs a row and then maybe 1hrs of dogs sleep. Before this I was always good sleeper, I could sleep almoust as long as i wanted. But thats gone. Body skin relatively ok, not normal not so sensitive as it was when I was healthy. Digestion better at this moment but that also fluctuates.

All in all, tought times and really hard to handle this moment.

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