That’s the Harvard study that the PFS Foundation commissioned.
Also so far Goldstein has not been worth it. Gonna give him another shot with another protocol but if that doesn’t work I’m through. And not just with him but with life.
May be that’s why methylphenidate helped me that much…
I am not science clever enough to understand most of the protocols here…
I know you have been experiencing a lot lately and I am either too scared ( very likely) or too early in the process to try anything…
Just hope science will help us…
When I see the number of people who completed the survey no wonder we will
Wait another 15 years to make any
Improvement…
I am not judging anyone who is experimenting because I am not in their shoes. I just hope no harm is done to these people…
I have experimented with Arimidex and had the opposite effect, restored morning and spontaneous erections but little(maybe) to no change in libido or visual responsiveness. How much did you take? Did you take Blood tests?
@Leider yes brother you can check my progress from here next week i will have a sperm count test.
Final protocol 100% pfs reversal with dht therapy - lastpost
I had a numb dick and extreme late ejaculation besides ed. With arimidex i got restoration on libido genital sensitivity and lust. Ed side it fluctuated a lot first week i was cured other weeks it went down very deep and went up a lot. First week i took like 0.5 mg every third day some times i took 0.1 mg everyday then i made a break i went bad i restarted i took 1 mg everyday and last week i increased to 2 mg per day then i switch to 25 mg aromasin everyday.
At the moment, i got funny feeling in base of my penis which always reminds me to, i have to have sex. also my way of thinking changed. i am more aggressive i even yell at boss if he makes any injustice. I have no anxiety at all, i even went in to jaw surgery with local anesthesia which I consider madness and i have mild short term memory impairment probably from reduced estrogen.
Worst side effect is joint pains and bloodshot eyes.
I visited dr Goldstein in july and will be back next week.
My case
- Used finasteride 12 years (2005-2017).
- Severe erectile dysfunction (quality/duration/semen volume), frequent peeing and after 2015 I became infertile. Sildenafil/Tadalafil dont work sufficiently anymore but injections (papaverine/fentolamine) do work.
- Things gradually worsened; no sudden shock after tapering off end 2017.
- No serious mental effects. (Slight low confidence / sluttering of speech / fatigue but I probably would not have noticed if I had not looked into PFS.) Libido is ok.
- Testosteron/dht is mostly just above bottom of normal range.
Examination results
- Dead cells in penis likely caused by low dht during 12 years.
- Penis glans has substantially reduced sensitivity (to temperature).
- I think he will tell me next week my 5-alpha-reductase conversion is broke. In july he raised my testosterone/LH/FSH with 50% using clomid but my dht did not increase.
Treatments
- Shockwave (Recommended: 18x)
- Platelet Rich Plasma injections (PRP) (Recommended: 3x)
- Trying to raise dht. (However, clomid (150mg pw) / anastrazole (1mg pw) didnt work.)
- Amfetamine (2.5-10mg incidentally).
First three treatments are supposed to create more healthy cells to compensate the dead cells in my penis. Also he proposed trying shockwave to lumbosacral spinal abnormalities to improve glans sensitivity. Amfetamine is against any mental side effects.
Did the treatments work? - CAN’T SAY YET
- I only had 2 shockwaves and 1 prp yet in july which is just a small part of the recommendation. I intend to do 1 more prp and 15 more shockwaves before february (starting next week) and then wait to assess results (and let you know).
- I am quite sure there was a small but clear positive effect one month after the treatments in july but I think it has faded again. (This is consistent with a lot of recent research showing shockwaves are effective in short run but the effect seems to diminish in long run (link).)
- Clomid/anastrazole increased testicle size a bit
and maybe a small effect on libido. No improvement in semen volume. No/hardly side effects.
Cost
- Examinations (6 in total): about $2500
- PRP (each): $935
- Shockwave (each): $450
- Funny thing is that during the courtesy call in february, dr Goldstein did not have a shockwave device yet (because of regulations that were changed in april) and he referred me to http://shockwavesclinic.com in Greece (dr Hatzichristou) where shockwaves and ultrasounds are a lot cheaper (respectively $160 an $150). I would very likely not have considered this clinic without dr Goldsteins referral.
What do I think of dr Goldstein
- I think he surely is competent. His cv is incredibly impressive, he has worked on pfs for over 10 years and two urologists in the Netherlands confirmed he is a good doctor.
- That does not mean his treatments work. He admits his treatments are “experimental”: there is some but no conclusive evidence about the effectiveness. As far as I can see now, the main uncertainty is if the benefits will last.
- He has a thorough/extensive (“holistic”) approach and took time for me. I had six(!) examinations: ultrasound, sensory testing, bulbocavernosus reflex latency testing, sex therapist, physical therapist and MRI. This way costs are running up quickly.
- He is not pushing to sell treatments. I asked several times if I should stay longer for more shockwaves or should come back sooner and he declined. Also during the courtesy call I proposed visiting him but to my surprise he instead suggested going to http://shockwavesclinic.com in Greece because he could not offer shockwave back in february.
- Customer friendliness at the clinic is (mostly) good.
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Good post, i do think shockwave therapy may be very beneficial for most of us.
For those interested, here is the information dr Goldstein provides about shockwaves and prp:
Concerning low intensity shock wave treatment we have in past recommended a month of treatment in Greece - the physician Dr Hatzichristou is an international expert. We now have our own low intensity shockwave therapy device at SDSM. In 2010, now 9 years ago, low-intensity shockwave therapy(Li-SWT) was first used in Europe as a novel and minimally invasive treatment approach for ED. Shockwave therapy has been used therapeutically in other fields of medicine, including in the treatment of cardiac or limb ischemia, diabetic foot ulcers, and wound healing. It has been proposed that Li-SWT restores erectile function by penile stem cell proliferation and by releasing vascular growth factors including VEGF and by directly increasing nitric oxide (NO) synthesis in penile tissues. Over the years, multiple other studies and clinical trials in Europe and other regions have endorsed the therapeutic potential of Li-SWT for thetreatment of ED. The European Urological Association has listed Li-SWT as a treatment for ED. The low-intensity shockwaves used in most Li-SWT treatment protocols published to date emit an energy density of approximately 0.09 mJ/mm2. In contrast, kidney stone lithotripsy energy densities are approximately 0.9 mJ/mm2 - this is 10 times higher that used for ED. In general, Li-SWT treatment protocols provide 1-2 sessions per week over the course of 5-10 weeks. In general, several thousand shockwaves are delivered to multiple areas of the penis, especially the 2 corpora cavernosa and the 2 crura, with each treatment session lasting approximately 15 - 30 minutes. In general, shockwaves are delivered by a hand-held probe. In general, treatment is offered in an outpatient setting with no analgesia needed. For more information, please communicate with Dr. Goldstein.
*> *
> Concerning platelet-rich plasma (PRP), platelets have a crucial role in coagulation and promoting wound healing following injury and contain various growth factors (eg, fibroblast growth factor [FGF], platelet-derived growth factor [PDGF], vascular endothelial growth factor [VEGF]) responsible for regenerative functions, including the recruitment of stem cells, modulation of inflammatory responses, and stimulation of angiogenesis. The use of PRP in medical therapy has grown steadily since its introduction in 1987, with reports of use in orthopedics, otolaryngology, neurosurgery, dermatology, cardiothoracic surgery, dentistry, and now sexual medicine. PRP is prepared by centrifugation of the patients’ own blood to remove RBCs. This process separates the blood into 3 components: platelet-poor plasma, PRP, and RBCs. The initial or first spin (known as the hard spin) separates the platelet-poor plasma from the PRP and RBCs, and the second spin (soft spin) separates the RBC fraction from the PRP. The material with the highest specific gravity (ie, PRP) is deposited at the bottom of the tube. PRP contains various growth factors, including PDGF, transforming growth factor (TGF)-b1, and VEGF. When platelets are activated, they release these growth factors to promote angiogenesis and tissue healing. The use of PRP in orthopedic medicine is relatively well established; however, little robust evidence evaluating the efficacy of PRP in sexual medicine published to date. Furthermore, to our knowledge, no randomized, double-blinded, multicenter clinical trials of sufficient statistical power have been published that provide generalizable clinical data demonstrating the efficacy of PRP therapies in sexual medicine. There is emerging evidence suggesting that neurophilin ligands and growth factors, such as insulin growth factor-1 (IGF- 1), PDGF, and VEGF, play significant roles in neural regeneration and up-regulation of neuronal nitric oxide synthase, as well as in the recovery of erectile function after cavernous nerve (CN) injury. Two groups have published animal model studies regarding the effects of PRP on the recovery of erectile function in rats based on a cavernous nerve injury model. Ding et al found that immediate application of PRP resulted in a significantly higher mean maximal intracavernosal pressure (ICP) and maximal ICP/MAP (mean arterial pressure) ratio compared with those in the injured control group at 3 months of follow-up. Although animal studies have shown potential for PRP to facilitate the recovery of erectile function, they have included only limited sample sizes and have acknowledged that clinical effects may vary depending on dose, preparation method, and administration. Importantly, investigators agree regarding the need for further research on PRP before this therapy has widespread adoption. The basic idea behind PRP injection is to deliver high concentrations of growth factors to an area that has pathology. For more information, please communicate with Dr. Goldstein.
Thanks!
Initially I thought shockwaves only improve blood vessels in the penis and PFS patients generally still have good blood vessels. But according to Goldstein shockwaves also stimulate creation of new smooth muscle cells to compensate the ones that died from lack of dht. Sure hope results can be made permanent…
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So is the loss of smooth muscle the reason why sex is generally dull and pleasureless for a lot of us? I feel like the muscles used in ejaculation work fine for me there’s just no feeling when it happens. Not sure what the role of smooth muscle is
I think the term “smooth muscle cells” is a bit misleading. It simply refers to the tissue in the penis and as far as I know that does not really have a lot to do with (normal) muscles.
There are multiple possible reasons / theories why pfs might affect sex, like:
- Smooth muscle cells have died from lack of finasteride.
- 5-alpha-reductase enzym is damaged so the body cant make enough dht anymore.
- Androgen receptors are damaged.
But if you’re like me (used finasteride many years (12), severe ed, constant “weak and wobbly” feeling in penis (while it was “strong and stable” prefinasteride) but no mental/libido issues), theory 1 seems pretty likely.
About the 3 theories:
Theory 1 has been extensively been proven in research. Irwig - Persistent Sexual and Nonsexual Adverse Effects of Finasteride in Younger Men gives a very good overview on p5-7.
Theory 2 was I believe confirmed by dr Goldstein in a video interview (which I cant find back right now).
Theory 3: I asked dr Goldstein about this and he told me he does not know any evidence.
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Any updates?
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Yes.
New treatments:
- In november I had prp + 6 shockwaves with http://sandiegosexualmedicine.com/ (dr Goldstein, San Diego, USA).
- In january I had 9 shockwaves without prp with http://shockwavesclinic.com/ (dr Hatzichristou, Thessaloniki, Greece). (This was a lot cheaper.)
Results (provisional):
- After the november treatments I had clear improvement (after few weeks waiting). Before I never had daily erections, now they occasionaly happen from visual stimulation (in both cases with 5mg daily cialis). But the improvement is still far from full recovery, maybe its 20% recovery.
- I dont notice any further improvement after the january treatments (first treatment 24 days ago, last treatment 6 days ago) (yet?).
- This seems to suggest that the prp works and the shockwaves not. But according to dr Goldstein 70% respond to shockwaves (18x) and only 30% to prp (3x) but if there is a response the response tend to be bigger with prp than with shockwave. Also dr Hatzichristou said there is new evidence that shockwaves and prp reinforce eachother. But actually, its just to early to draw conclusions what might work for me.
- I am concerned if the improvement is fading away. (I do seem to feel that way a bit; or maybe I am just quickly getting used to the improvement.) However both doctors said that if finasteride patients have improvement, the improvement is usually lasting. Fading mainly happens with diabetes patients.
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And here the disappointing conclusions 
:
- There was only temporary improvement after the prp/shockwave in both july and november.
- Both times the improvement started around one month after treatment and ended around two months after treatment. It was quite noticeable and therefore I don’t think it was placebo.
- I did use tadalafil/clomid/anastrozole as prescribed by dr Goldstein (up to today).
- Remarkably, there was no improvement (also not temporary) after 9 shockwaves I did in january with dr Hatzichristou (Thessaloniki). (Maybe because he didnt do prp or because he didnt use a urogold100 device.)
- Unfortunately, the situation is now just as bad as before treatment.
Only bright spot is that there does seem to be a treatment that works temporary. Maybe, if after a few years shockwaves and prp 's become more affordable, I can do it on a regular basis and that way improve a bit persistently…
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Did the prp shots increased your erect penis size? What can you say?
Hi Cooper, I had no effect on penis size.
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Does anyone know of any similar, open minded doctors based in the UK?
3 from England. (also 4 in Ireland and quite a few in France. I dunno how easy it would be for you to see a doctor in another country.)
If you can’t see anyone on the list, you can always give your local practitioner a try. In my experience (w/ a couple general practitioners) they seem to be open-minded. I’m sure that even a skeptical doc would still be willing to point you towards a specialist.
Thanks bibfortuna … i’ll have a look mate.
I’ve got a phone appointment with my doctor again tomorrow (its the 3rd time). First one was ‘just give it a few weeks’. The second one was ‘ ive prescribed you some viagra, its probably all in your head’…Not what you want to hear really.
It always sucks to be told that it’s all in your head, but at least there were willing to prescribe you some meds.