I have been dealing w/ a pretty bad case of peyronies (not from any physical injury) for a year - which has been getting worse. I have lost a significant amount of size and do not have normal erections, even with viagra I am close to having surgery or treating it with some heavy pharmaceuticals - but I am starting to wonder if I shouldn’t be so focused on fixing the peyronies (with anti-fibrotics, and about a dozen RX meds and supplements) which is just a manifestation of a much more serious testosterone issue (potentially, as this board seems to indicate)
The thing is, I was only on propecia for a max of 3 months and I didn’t even take it regularly. I saw the youtube clip where a doctor said patiens were on it for 2 weeks & it ruined their lives. Are people really this sensitive? Does anyone know why someone would fall into this ultra-sensitive category?
As of last week, my T levels are in the 600s, and all other sex hormones & SHBG are normal. The only weird thing is that my free T is 1% and the doctor said it’s best if it is “at least 1.5%” - but I didn’t really know what to make of this. His next appts are in Feb - so I might have another doc take a look. My T3 and T4 were a problem long before propecia - and it’s been treated (not at “7x normal doses” which I read here…and I don’t reall understand that… just 50 mcg Levoxyl and 25 mcg cytomel).
Anyway, does it sound like propecia started this domino effect which led to Peyronies? After propecia, I didn’t really have much of a sex drive… my flacid penis was cold all the time, I didn’t have nighttime erections and didn’t wake up with erections. Also, I had a distinct increase in sebaceous glands on my penis which looks pretty disgusting (it’s not an STD…urologists just say “everyone has that” - but that’s BS bc they don’t) Anyway, this poor penile health can lead to Peyronies in some guys bc the tunica thins out (animal studies show low T = thin tunica), has less access to repair mechanisms, and poor circulation is just generally bad for any organ…hence, the scar tissue builds up.
It’s just crazy to me that I only took it for such a short time, so I don’t get how it rewired my endocrine system…I am about to start about 30 pills a day for Peyronies (all aimed at the collagen pathway, inflammation pathway, TGF1beta, PDE5, etc…) - but I’d rather not I’m only hitting a symptom and not the disease.
If you have not had comprehensive bloodwork yet, especially for your androgens (Total/Free Testosterone, DHT, Androstenedione, 3a-androstanediol glucuronide (3a-diol G), DHEA etc), then you really should.
This is actually quite crucial as Free T is what is biologically available to the body – thus, if Free T is below range/low, it could be potentially contributing to your issues. It is also a common problem for many men affected by persistent hormonal changes from Finasteride – decreased Total/Free T. Testosterone, particularly Free/Bioavailable Testosterone, is also correlated with erections/nocturnal/spontaneous erections.
Likely due to low Free T. Sounds like the issues most men are left with post-drug, especially considering the above and below. Unfortunately erections are necessary because they supply the penile tissues with fresh oxygenated blood, to prevent fibrosis and collagenous deposits.
Sounds like you’ve already done some research and understand the mechanisms behind what you are potentially dealing with.
If that’s the case, seek out treatment under one of the commonly listed Post-Finasteride Syndrome docs on this site.
Mew, thanks for going over all of that detail. That is really helpful. It certainly beats waiting until February to see this doc. I do have access to other doctors (family, friends, etc…) but they are hesitant about prescribing me testostorne or related drugs… and the wait to see docs that know what they are doing in this area is very long. I will have to take a look through the other pages of the site.
A lot of docs look at peyronies as a symptom of “some underlying thing” which as been a mystery since the 1700s. Some think it is auto-immune…specifically, an overreactive immune response to an injury - but then the question becomes - WHY is the body overreacting? And it would logically follow that I should have asthma or scleroderma or other fibrotic conditions if that were the case. And so it sounds like the answer is likely to be androgenic… the study you posted is very a disturbing confirmation-- about rats who received fin. I cannot even believe any man on this planet would take that drug if they saw that study. I certainly would have not done so. I’m sure this has been posted 100 times here but how is that drug still on the market w/ that experimental outcome?? Geez…
This would also explain my mood over the last 2 years - but endless “total t” levels were always normal and so I was never closely monitored for this. I just am amazed I never pushed for a full sex hormone panel since I thought I didn’t take enough fin to do any damage. Well, now I have to look into the various androgen replacement protocols discussed here. It’s incredibly complex to me at the moment… Thanks again.
There is no guarantee changes to penis tissue can ever be reversed. Be it caused due to low available T or some androgen resistence (a side effect of the side effect if you like). We need to fight the fibrosis! In my opinion we should all be trying some of the drugs identified in this section to minimise damage.
orion, I would be very interested to learn what medication you had researched, prehaps you can share what you have found that might be helpful?
Yeah, i saw the Coq10 study…I bought ubiquinol and will see how it goes. CoQ10 itself is not well absorbed, but ubiquinol is the active form of it that is well absorbed.
The peyronie’s forum has a lot more discussion of oral therapy but the general consensus is:
Trental (Pentoxyfilline) - 400 2x - 3x per day to inhibit TGFbeta 1
L-Arganine from 500 mg - 6 grams per day - Promotes nitric oxide which dissolves scar
PDE5 inhibitor - oxygenates the penis, gets blood in there also delivers the other meds that dont get in if you aren’t getting erections
Nighttime erections are very important in general - so anything to achieve this is important.
Bromelain and quercetin are also out there as collagen regulators…uncertain though. Vitamin E doesnt do much…but is supposedly synergistic with the meds above. Pycnogenol is synergistic with l-arginine for ED. Fish oil cant hurt… there are a lot of supplements but few studies… one study has l-acetyl-carnitine showing promise, but there’s no clear solution.
btw - the reason I talk about treating the underlying disease is that even if the fibrosis can be fixed, it’ll just come back if there’s an underlying T disorder. So using penile extenders, etc… doesnt help if there’s no testosterone anyway. If the collagen could magically be disolved but there was still a T problem, I think the disorder would progress still. It’s possible TRT might restore penile health over time - but scar tissue does take up to 2 years to remodel completely.
It’s good to see this symptom getting more discussion on here as it’s bad enough in itself.
I googled this treatment from Dr Thierry Hertoghe which indicates use of andractim to the penis and high dose TRT.
Interestingly it suggests that a cortisol defeciency is also indicated in PD which is what I have. Although that wouldn’t explain why I got it almost instantaneously when I crashed.
'Treatment scheme of the famous endocrinologist Thierry Hertoghe for Peyronie’s disease:
Vit. E 1200 mg/day oral
Oral Hydrocortisone (30 mg/day) or glucocorticoid (prednisolone 5 mg or if AHT 4 mg of medrol)
Testo enanthate injections 250 mg per week (2 months) then every 10 days (2 months) then every 2 weeks (2 months)
GH: doses around 1 IU/day or 0.33 mg per day
Locale DHT gel 2.5%
There is often cortisol deficiency in Peyronie’s disease and a 5 mg
prednisolone could be necessary to combat the fibrosis in case of confirmed cortisol deficiency. Doses of vit. E are rather 2000 mg per day during 9-16 months. Fundamental is also the food : alchohol –sweets and starch (including bread and pastas) – milk intake seriously hinders the treatment, while a high protein (meat, fish, poultry 200-300 grams a day is essential, only fruits and vegetables as supplement to protein
No problem of topical DHT and prostate (in fact systemic DHT reduces the prostate volume by – 15 to *- 20 %.
First results to expect after 4-6 months, more if the food was not good’
My god… mew, do you have any idea that is this muscle tissue damage reversible? Is there any chance that my low semen volume issue is actually due to this muscle loss but not hormonal?
If we exercise and supply the muscles with DHT or something again, will they grow back and heal completely?
