boston332's story

Member Stories
#41

golf - Thanks for taking the time to break that down for me. Seems to make sense.

cantsleep - Right now for me yes, basically the shrunken penis is the worst of it. Maybe that is causing the depression and lack of emotions. Penis also burns a bit and testicals seem to ache most all the time. Wondering if at least this subsides?
Yes, I know others are dealing with worse. Everything basically started going back to normal for a few weeks until I shrunk back down about 12 days ago. I think you went through a similarly cruel false recovery.

#42

False recovery sucks. I just went through one. I got to 80 percent plus and then had a setback. Which was fine, but then I completly crashed. I’m as bad as I was after my first crash pretty much. Pretty devastating. Make sure you are extremely careful with what you put in your body. I was recovering and really thought everything was going to be OK. I didn’t realize the body could shift back so much. I wasn’t watching my diet as much and having wine with dinner etc. The body just senses it and shifts. I think the liver is very damaged mechanically.

After my latest crash I lost all sensitivity down there and everything is shrunk like never before. Be carefull right now. Keep your diet as clean as possible.

#43

My penis and testes don’t ache as much as they did. The first few days after my original crash, there was frequent pain, particularly after I masturbated, but not so much anymore. In fact I masturbated last night and there was no pain at all. I think others have shown improvement in this area too, even if their penises haven’t returned to normal.

That brings up another point though. I assume that like most of us you are no longer getting nocturnal erections. Make sure you masturbate as frequently as is comfortable so that you keep blood flowing down there. I also take frequent hot sitz baths to soothe the area and allow blood to flow in my penis and prostate. Inadequate blood flow might lead to fibrosis/Peyronie’s disease, so make sure you keep things moving down there.

#44

Agree with you, Cantsleep. I think the cialis gets some blood going down there more so than without it. I try to look at porn as much as I can to force partial erections when possible.

Yup, that is basically my plan too, Proscarred. I dont touch anything but the usual supplements and I eat really healthy and get as much sleep as I can. It’s all we can do at the moment. Hopefully the depression will subside enough that I can get back to the gym too. Sometimes its a struggle to get out of bed.

#45

Hey yeah, I’m going through the same thing. I basically stopped going to the gym altogether. I had been going nearly every day and was working out like crazy before I started taking fin, but gradually slowed after all this started. Now I haven’t been for 2 1/2 weeks and I’m so depressed I can’t even get myself to go for a walk.

#46

So, got part of my bloodwork back today. Still other test results coming.

FSH - 11.4, range 1.4-18.1
LH - 9.4, range 1.3-8.0
Prolactin - 5.9, range 2.1-17.7
Testosterone- 565, range 241-827
Cortisol AM- 15.9, range 4.3-22.4

Vit D 25 Hydroxyvitamin D- 19, range 30-100 ng/mL
Vit D 25-0H D3- 19 ng/mL
vit D 25-oH D2- <4 ng/mL
Estradiol E2, Serum- 33 PG/ML
Dihydrotestosterone- 39, range 25-75 ng/dL
Prolactin- 5.9, range 2.1-17.7 ng/ml
IGF Binding Protein-1- 7(L), range 13-73 NG/ML
DHEA Sulfate 404 (H), 45-345 UG/DL
Sex Hormone Binding Globulin 24, range 9-45 NMOL/L

#47

LH and FSH are high. but need to post ranges each time you post.

#48

Received completed labs -

FSH - 11.4, range 1.4-18.1
LH - 9.4, range 1.3-8.0
Prolactin - 5.9, range 2.1-17.7
Testosterone- 565, range 241-827
Cortisol AM- 15.9, range 4.3-22.4

Vit D 25 Hydroxyvitamin D- 19, range 30-100 ng/mL
Vit D 25-0H D3- 19 ng/mL
vit D 25-oH D2- <4 ng/mL
Estradiol E2, Serum- 33 PG/ML
Dihydrotestosterone- 39, range 25-75 ng/dL
Prolactin- 5.9, range 2.1-17.7 ng/ml
IGF Binding Protein-1- 7(L), range 13-73 NG/ML
DHEA Sulfate 404 (H), 45-345 UG/DL
Sex Hormone Binding Globulin 24, range 9-45 NMOL/L

#49

nice to see DHT and T in range…

whats your next step

#50

I dunno. My other results look ok? Vit D is low too, no? Odd, im taking Vit D3 supps and milk with vit D added. Im going to see Shippen/Jacobs and see what they say. So weird two days ago I was starting to feel a little better and today Im back to baseline crash with shrinkage, ED, zero libido and very severe depression.

Im kind of concerned with my IGF Binding Protein 1. I think 7 is way too low.

#51

so your still seeing shippen over mariano? any reason in particular?

#52

Well, y’know, he does have about twenty times more experience of dealing with fin cases and is located on the same side of the country. :unamused:

#53

Proximity is a big deal. I already scheduled appointments with Shippen and Jacobs before I talked with Mariano’s office. I am about a 4 hr drive from Shippen so I think it would be definately worth the 1k it will cost me to make a day trip there and get his take on the situation. I will see Jacobs too before Shippen in a couple weeks. Gonna get everyone’s take on things and go from there. I’m still gonna try for Mariano in early November (that might be too ambitious considering all the logistics) then consider all three and decide on a treatment plan and who to do with. I do like Mariano and having to make a trip to Cali once a year isnt the worst thing in the world.

Wonder if I could talk all 3 of them into consulting between eachother and coming up with a treatment plan? Seems highly doubtful and kinda afraid to run that up the flagpole.

#54

I JUST got off the phone with Dr. Goldstein. What a depressing conversation. He said that anyone who says they are having alot of success treating PFS is not telling the truth. I asked him, “will I ever go back anatomically to the way I was before?” He asked me if I wanted the truth. That took the wind out of me a bit. Then he basically said no. That we are permenantly changed for some reason no one knows. He said he would love the chance to get together with the other 3 PFS Doctors and conference sometime. He also said that he does check this forum from time to time.

He says right now his guess is its something to do with androgen insensitivity. I guess we all knew that.

Again, nice and smart guy. But that was a depressing conversation…

Anyway, Im going to talk to Jacobs on Friday. Probably more bad news there.

#55

Atleast he told the truth, not like these other guys that are saying they have a “success rate”.

#56

It would be excellent for them to speak to one another, but breaking down what he said: he states “his guess” is and “probably” has something to do with androgen insensitivity - he didn’t tell you are androgen insensitive, nor does he have proof of the fact.

In addition he doesn’t (from my understanding) do complete blood work (one example is that he hasn’t tested adiol-g in patients, should this be totally disregarded?), does he even consider other factors which can effect androgen production like thyroid? and is he not primarily a urologist, not an endocrinologist? If we were androgen insensitive, why do some long term sufferers like Mitch manage to heal? Why do i still get a lot of acne? I could go on…

Also - The surgeries in which he performs, from which i understand are quite costly, are likely a major part of his practice - so recommending them because you are “androgen insensitive” is, as a businessman, intelligent as can be. I am sure he is an intelligent doctor, but consider the fact that he is a businessman as well.

I do agree, however, that it is unwise to listen to any doctor who promises you success - and that you must simply consider the options when attempting to seek out treatments. This is also not an attack on Goldstein, who appears to care about our issue and is providing the best care he can - Just be sure to view what he said from all angles.

#57

I really don’t buy this indefinite androgen insensitive whirlwind that we are apparently in; I know from experience that some days my face is bone dry and my lips are cracked (and eyes really bloodshot/dry); and, on others my face is oily and I begin to break out. I see this shift play out from one week to the next. Recovery is possible, it just takes an eternity. From the recoveries I’ve read many seem to argue that time is the greatest resolver in this mess; and, not so much their interventions (medicinal). Of course, I’m not saying people shouldn’t try various treatments: just noting a trend.

#58

This isn’t about androgen insensitivity
This is about thyroid and adrenal issues.

JN

#59

Yes, Goldstein was very sympathic to our situation. Said we live “miserable lives”. He did actually call me himself. I forgot to call him earlier. Damn brainfog. And, he offered to look over my bloodtests and anything else I wanted to send him to by email. Hopefully he replys. He wasnt pushy really and said I could seek out as many opinions as I wanted and if I wasnt happy that he would look at my case. I got the feeling he would also be willing to work with other doctors in coming up with specific treatment plans.

I think its great if he and a few other of the doctors would get together on this for an hour long conference call on PFS. It would do wonders to their careers if they were able to get together and solve this, or even make our lives somewhat “normal” again. I want to ask Jacobs about this when I see him tomorrow.

I guess my approach to this is getting as many opinions as I can. Im seeing 3 of the 4 docs. I think Jacobs is an excellent option if your problem is above the neck. Goldstein might be good to see to rule out any physical problems. Shippen seems to be very wise and has been at this a long time. But, Im most excited to see Mariano in November to be honest. I may even fly out to Michigan and see Cristler next year.

ps- Thanks for that reply, Golf. Excellent points. Even if you didnt intend that to make me feel better, it did. :slight_smile:

Godspeed to everyone in our recoveries from this nightmare.

#60

Oh, how sweet of him. What would have been really nice if he would have PUBLISHED something since he has been aware of this issue for years. Even an internet or blog entry would have been amazingly impactful since so many people in the affected age group use the web. He, potentially, could have prevented many of us from undergoing these long term, life altering side effects as a rather powerful doctor instead of just sitting there and waiting for “victims” to roll in to his door. He has known of the issue for at least 6 years years if not more, and the only thing he has done to make it more public is make a tiny statement in men’s health magazine about it. Truly sad.