My story: PFS - ED/Low Libido - TRT: no success so far

[daddel]

Dear PeakT members,

I have been reading here for a long time, but now I would like to contribute here, tell my story and ask for help/opinion.

I don't want to make it long, so I try to abbreviate where I can.

I am 38 y/o, 1,9m tall, slim, sporty, and have been dealing with low libido and especially ED for about almost 15 years. It started in 2005, when I was in my early 20s: I took Finasteride for several months, stopped and developed "PFS". Symptoms: Low libido, ED and sleep and concentration were also getting worse. However, my main focus is on low libido and ED. Sex since then was only possible with PDE5 inhibitors. In between, around 2009, it got better for a few months and I could have sex without ED drugs, but that was short lived. It never got back to the way it was before. Over the years it got worse. The ED drugs have, sometimes extremely high doses, worked worse and worse, until it is currently almost impossible. I can currently take 400mg + Sildenafil - it has no effect at all, except for the known side effects (vision, red head etc.).

I have tried many things, various medications and supplements, it would be a very long list to present here. But the well-known things like Clomid, Progesterone, L-Arginine and Tribulus were there, just to name a fraction.

I repeatedly had my blood work done. Over and over again, conspicuous:
1. Very low testosterone levels: Always around the 2.65-3.30 ng/ml range, sometimes even lower (reference 2.49-8.36). DHT often at the upper end of the range and currently also SHGB elevated with 62.7 nmol/l (reference 16.5-55.9).
2. Blood lipids constantly elevated, which I cannot or only with great difficulty get under control through sport and diet, it seems to be genetic: Current cholesterols 237 mg/dl (reference <200), HDL 37 (reference >40), LDL 178 (reference <160) and triglycerides 277 (reference <150).

Based on my symptoms and also Doppler ultrasound, it looks like I have developed some kind of venous leakage due to that hypogonadism. You can tell just by the fact that the ED drugs are no longer working, it's like I'm eating candy.

I have tried twice in these last 16 years to get my levels under control with TRT (Testogel, no injections). I remember always stopping after a few weeks because I didn't feel any improvement in symptoms - possibly I always stopped too soon. I now know that venous leakage in particular can take a long time to improve. Therefore, since October 2020, I am back on TRT with Testogel under the view of my andrologist, but so far, 4 months later, cannot see any improvement in ED or libido. I started taking two pumps of Testogel from the dispenser every morning. With this, I had a relatively high testo value shortly after starting therapy (about 10 ng/ml, measured about 2 months after starting). Then my doctor told me to take only one pump from the dispenser. Unfortunately, I now only achieve a very low Testo value around 3.03 ng/ml, which is actually no higher than if I did not take Testogel. Possibly it is due to the fact that now my body has simply stopped the complete self-production of Testo and my value is therefore - despite substitution - in the basement.

Finally, I would like to mention that I have a congenital upward curvature of the penis. My attending physician is an andrologist and also a specialist in penile straightening surgery. He therefore performed a penile straightening operation (NESBIT) and at the same time a venous ligation on me in June 2020 in the university hospital where he works, which was supposed to address the issue of venous leakage. We were both aware that this ligation often does not lead to success, but it was worth a try. Both could have helped improve erectile function and rigidity/stability according to the doctor. The surgery went ok so far, but unfortunately my symptoms did not improve - it actually got worse over time. Of course, I don't know if this is a result of the surgery or the further progression of my underlying condition. Since even shortly before the surgery I was virtually unable to achieve more than 50-60% erection with manual stimulation, which also collapses again after 5 seconds, it may well be that the surgery is not to blame here. I have now not had sex since June, which of course is also stressful for my marriage - but I have a very understanding wife.

I would be interested to know how you see my case? I'm still leaning towards doing something about the blood lipids, because that can also be a possible cause of my problems. Should I stay on TRT? If so, what can I do to keep my levels stable in the mid range? Should I take an injection? Or even HCG? Because we would also like to have children, which of course is currently a long way off.

Thanks for reading through and any advise!

daddel

[Cataceous]

Your case is complicated, to the extent that basic recommendations may be inadequate. I suggest filling in any of these lab tests that you haven't had:
https://www.peaktestosterone.com/Testosterone_Tests/
Skip LH and FSH while on TRT; they are expected to be low.

You could switch to testosterone injections to gain better control over your levels. An SHBG value could help in setting a target for total serum testosterone. Although many, and perhaps most guys who have been on TRT can regain fertility after stopping, there are no guarantees. If having children in the future is important then you may want to bank some sperm as insurance. This would require temporarily stopping TRT and perhaps taking Clomid until you are fertile enough. Another form of insurance is to take hCG when you are on TRT. This preserves fertility for many while preventing testicular atrophy. In some cases hCG use also results in a better subjective experience with TRT.

Have you tried a fish oil supplement to help with the lipids? It's worth a go before resorting to stronger methods. Do you have any measurements for estradiol? It's possible that low values along with your elevated SHBG are pushing lipids in the wrong direction.

Am I correct in assuming you're not in the U.S.? This precludes your being a standard client of Defy Medical, which I would otherwise very much recommend. However, this clinic offers a consult-only option, in which they review your case and make treatment suggestions to your local doctor. It's something to consider if you lack confidence in the expertise found locally.

[daddel]

Hi Cataceous,

thank you very much for your helpful answer. We would like to plan for children, but I am far from that for now with my problems. It is first important that I am able to get erections again. Everything else comes after that. SHBG is actually quite high in my case (see above), so maybe that is already the problem. I will also ask my doctor if it makes more sense to go for T-injections instead of T-gel. I really don't feel any androgenic effect at all. Neither libido nor erections. HCG I will also bring up, I am still waiting for a call back from my doctor.

Fishoil I bought currently and I have been taking it for a few days. Hopefully that and my almost daily jogging laps will help get the lipids back under control. They have been this high for me for years, even though I am really slim and have no other risk factors.

I do not live in the USA (Germany). Finding good endocrinologists here is very difficult.

Unfortunately, I have not currently had an estradiol value determined, but I will do so later. Could it help if I try to take Proviron? I have heard a lot of good things about this for men who feel no effect from TRT alone.

Thanks!

[Cataceous]

I have my doubts about Proviron/mesterolone in your case. It's a DHT-based steroid and you say your DHT levels are on the high side already. I would try to normalize testosterone levels via injections and then give things some time.

Do test estradiol when you can. If it's on the low side then that would be another reason for adding hCG to your protocol.