[Size=4]Update of Treatments/Results[/size]
An update of my story has been long overdue. I’ve received PMs from time to time asking about Testosterone therapy, my surgery and general progress. People incorrectly assume that I am on TRT now, or have libido or a certain level of erectile ability. To be clear, my sexual function has bottomed out: I have nearly zero libido/drive/mojo, severe E.D. persists, back when I was still trying to date and have sex it would take obscenely high doses of Cialis or Viagra to get erect and sensitivity and pleasure were dulled. I also suffer from ongoing fatigue and depression. My ejaculation strength and volume are still subpar. It has been 4 1/2 years and counting now, of acute downward spiral illness. There have been moments where I’ve felt more energized, brief moments of positive signs, but overall, regretfully, I do not have anything to show for all the time, effort, money and pain I’ve invested in treating my PFS symptoms.
Here is a summary of the major stuff I’ve done along with the results and my assessment:
Hormonal Manipulation
Started with Clomiphene Citrate, added some Testim cream, followed by Arimidex. Played the dosage balancing / routine lab draw game for about a year. Seemed to give an initial boost in overall health (concurrent with better diet), may have helped “prop” me for a while, but ultimately worthless in my opinion. The prescribed nightly Cialis was most likely the cause of morning erections.
Penile Revascularization Surgery
Unnecessary, did not ultimately alleviate my severe E.D. I’ve since performed a multitude of doppler ultrasounds confirming that there is an ABUNDANCE of arterial blood flow to the penis. Furthermore, multiple urologists have told me from examining pre-op ultrasounds, tests and angiogram x-rays that the surgery was completely unnecessary. Most candidates for the surgery had clear cases of bike-related blunt perineal trauma; I had no such history, but took a chance because at the time, I thought I had done all I could do on the hormonal side. It was a mistake to not get second opinions before surgery. But I had a limited window with insurance coverage, and placed too much trust in the diagnosis. Tough lesson to learn. All other PFS cases who did the operation and some anecdotes of SSRI patients had the same (non) results as I did.
I had previously reported that I did have libido at the time of operation (hence why I entertained the possibility of mechanical malfunction). In retrospect, this was probably due to my nightly Cialis usage and hormonal manipulation. The inevitable downward descent was likely temporarily masked.
Now, regarding the previously-reported brief one week recovery at 4 weeks post-op: T to E ratio appeared good at this time, libido and brain-penis connection (fantasy/arousal) seemed to be there. Thought that T:E ratio was responsible, but it’s anyone’s guess what exactly was happening at this time.
Recovery didn’t last. Impossible to balance estrogen. High dosages of Cialis and/or Viagra were still necessary to have sex. Which wasn’t that pleasurable. Confounding variables to brief “recovery”: daily walking of 20+ miles & resultant high sun (vitamin D) intake, high zinc supplementation, multiple doctor injections of TriMix vasoactive agent to test penile artery connection via Doppler ultrasound, nightly 5mg of Cialis, 4 weeks of abstinence, exogenous hormone supplementation (Testim, Clomiphene Citrate, Arimidex) & again, apparent great T to E ratio (temporary).
Nutrition / Supplements / Medicines
Weaned off hormones and tried a new program of high dose vitamin supplementation (we’re talking the whole alphabet). Tried Dopamine Agonists like cabergoline, bromocriptine, L-dopa, etc. Tried bupropion. Tongkat Ali herb. Armour Thyroid. Brief flirtation with Testim alone and Clomid alone. Nothing worked. Libido fell to at an all time low. Didn’t even feel like masturbating any more. Realized I was doing it to try to feel normal, and out of habit, not pleasure. Loss of nocturnal and morning erections w/o hormone or Cialis use. Only positive was introduction to Weston Price/Primal Blueprint diet principles which provided some general health improvements.
Nystatin
Brief window of success taking Nysatin (intestinal antifungal) at high dose (return of rock hard morning erections). Was derailed from continuing this program due to difficulty in procuring the drug and other circumstances. Eventually headed in a totally opposite direction of theory/treatment. Theories for treating with Nystatin have been addressed elsewhere, use the search function and read posts by member Ihatepropecia702 if this angle interests you.
Prostatitis Pressure Massage / Antibiotics Treatment
Inconclusive. Nearly 2 months overseas treatment from prostatitis specialist doctor. No confirmed cultured pathogenic bacteria before or after. Allegedly observed inflammation via TRUS (Trans Rectal Ultrasound). Took long list of heavy fluoroquinolone antibiotics which wiped me out, exhausted me, including: ciprofloxacin, prulifloxacin, netromycin, moxifloxacin, nitrofurantoin, and others. DHT temporarily spiked in the middle of this treatment. Never before did this w/o hormones. (It’s now back to bottom of range, again). Urinary Strength appeared to improve. Weak morning erections started coming back during treatment. Lots of fluctuation in symptoms. Testicle pain seemed to go away. Then resurfaced. Did penile rehabilitation therapy (yohimbine, penile self-injections, weekly cialis use) for several months which improved general blood flow but did not solve arousal/erection issues. Results vanished upon discontinuation. The goal was to reverse mild fibrosis observed via ultrasound which affects veno-occlusive function (a direct, research-documented effect of finasteride intake/androgen deprivation). As of now, a couple uro-genital symptoms appear to have improved: urinary frequency/urgency + testicle pain. But symptoms have roller-coastered before, so I don’t know what to expect. The procedure appeared to do wonders for some classic, previously diagnosed chronic prostatitis cases. But it was clear that the PFS patients had something deeper, more symptoms, like fatigue, brain fog, worse libido/erectile issues. There was overlap in symptoms, some temporary improvement in some of the other PFS guys, but no substantive, conclusive, permanent improvements. Some were worse after the treatment. It took me a long time to recover from just the exhaustion of the antibiotics. I’m still not back to exercising as a precaution to not risk tendonitis from the FQ abx.
Current Thinking / Future Treatment / Lots of Speculation / Don’t make my mistakes
So I’m still suffering……I’ve been on the verge of breakdown, throwing my hands up, quitting, checking out. Somehow, I find some strength to keep on fighting, and that’s what I’m gonna attempt to do…
I feel that the solution to PFS is to fix what is wrong with the individual. All healthy folks are healthy in the same way, all sick folks are sick in different ways. Remove whatever obstacle there is in any individual PFS case, the body heals and returns to homeostasis. Simple, right? Lol. Alas, this has been an elusive task. My theory of PFS is what I’ve termed iPFS in honor of the late, great Steve Jobs: immune Post Finasteride System. In us unlucky young guys, finasteride was a switch that overwhelmed the system. Be it genetic proclivities, undiagnosed red flags that we should have been screened for/warned about before being indiscriminately prescribed a hormone-altering drug for cosmetic purposes, nutritional deficiencies (that every other guy who doesn’t take finasteride can get away with), etc., something overwhelmed the body’s systems, and I feel we’re in an overloaded, impaired, stressed immune response. The trick is to discover which systems have been compromised, and hopefully undertake a correct, methodical treatment to reverse. <----You don’t have to agree, it’s just my hunch, and I am not gonna bother attempting to substantiate this claim. And as I’ll keep emphasizing: I was wrong in everything I’ve tried, so what do I know?
I have my theories on this line of thinking, I’ve discussed some aspects of them on other threads, but I don’t care to get into specifics or turn this into a debate thread. Too often, I’ve become a cheerleader for the treatment I was pursuing because of all the negativity and critical response. Some of the critiques were warranted, boy I wish I hadn’t been so trusting, foolish, and impetuous! But here I am. For what it’s worth, I don’t believe that MDs, urologists, endocrinologists or pharmaceuticals, hormones or conventional approaches are the answer. I’ve become increasingly cynical, untrusting, jaded and conservative in treatment or supplementation of anything exogenous. I think that the de facto health care symptom treats symptoms and not underlying causes–it’s one big bandaid, and it doesn’t work. My current stance contradicts many of the things I’ve believed or preached or argued for in the past. So I’m gonna just shut up and and continue to research and learn more about diet, nutrition, chronic illness and alternative treatment ideas all by my lonesome.
Since I’ve been wrong on virtually everything I’ve tried to correct the problem, whatever I’m currently thinking/trying doesn’t matter. Don’t do as I’ve done! Lol. I cringe at a lot of my past impassioned writings and opinions–I think I was venting my PFS frustration by arguing for the sake of arguing a lot of times. I wanted to argue with the naysayers, I wanted this problem to be outside, finasteride, quite frankly–the stark reality of finasteride permanently altering us is too much to bear.
Regardless, I’ve realized that we’re going around in circles on this forum, and that my obsession with keeping up on the latest news and comments from the forum has not helped me become any healthier. I’ve really had some dark moments of depression, and I have to unplug and decompress for a while, attempt to not let compulsive PFS research and desperate, emotional internet forum in-fighting take a hold of me. So, since the areas I’m looking into now are controversial and usually spark up heated debates, I’d rather just do my thing offline and report back if a sustained, legitimate improvement has been achieved. It’s another fucking year closing in on me with this illness, and my goal is to try to avoid the forum, focus on new paths as positively as possible. I just wanted to clear up some misconceptions about my PFS treatment and provide a much overdue update (read: warning to not repeat my mistakes!). I hope 2012 brings us some new breakthroughs, hang in there guys. Man, I am freakin’ verbose–sorry for the length of this post, I didn’t have time to write less.