2020 has been a strange year for me. Obviously it's been rough for the world, but for me personally, it has been pretty alright. This is mainly because I can now say I am around 80% cured of PSSD. Some symptoms linger, like difficulty getting quality sleep and reduced genital sensitivity. But I feel I can now have a mostly normal sex life and stop worrying about PSSD.
Current status of PSSD symptoms:
- Genital numbness (70% of normal sensation)
- Anhedonia (90% of normal)
- Ejaculatory anhedonia (90% of normal)
- Erectile dysfunction (90% of normal)
- Low libido/desire (80% of normal)
- Poor sleep quality (70% of normal)
Given the COVID situation, I haven't had any opportunity to date or have sex this year. I imagine that when I am in a relationship, I would rate many of those symptoms even better. It's a tough time to really gauge how my PSSD is doing, but nonetheless I recognize serious improvement. I will of course provide a report of my situation once I am dating and evaluate my PSSD in that context.
This is how I have felt for the last 3 months. I'm not currently taking anything for PSSD. But I do take vitamin D and B vitamins most days for general health.
These days, about half the time I feel great sexual function, and half the time it is just ok. Given I'm nearly 10 years older from when I first got PSSD, it's hard to tell what is due to aging and what is a lingering PSSD symptom. But generally I feel that my sex drive could keep up with an above average female sex drive.
I had some windows in 2019, but I wasn't sure what caused them since I took too many things at once. In 2020, I decided to focus on diet and hormones.
HCG
The first thing I tried in 2020 was HCG. I speculated that my 2019 windows were in part due to altering hormone levels. So HCG seemed like a good thing to try.
I first took 125IU 3x per week (M/W/F) for a few weeks. I did not notice much of anything until I bumped up the dose to 250IU. Then, I noticed an improvement in libido and general sexual function. I briefly tried 500IU, but around this time my left testicle began hurting. I have a minor varicocele and it seems like HCG made it a bit worse. I stopped HCG and the testicular pain went away within a few weeks, but so did the benefits. In total I was on HCG for about 2.5 months. Next, I would try TRT, and later go back on HCG for a 6 week PCT.
TRT
A few weeks after getting off HCG, I decided to try TRT as another trial altering hormones. HCG would have elevated my androgens (among other hormones) so it seemed worth a shot to see how I felt with elevating my androgens directly. Little did I know, TRT is hard to dose properly.
I began with 50mg Test Cyp, twice a week, subq (Mon morning and Thurs night). Based on my research, this is a common protocol for long term TRT patients. The first few weeks I felt improvements similar to HCG. Ideally I would have gotten blood tests every 2 weeks, but due to COVID, this was not feasible. So I was flying blind, trying to adjust dose based on feeling. I suspected my E2 was too high due to tenderness in my nipples. I began taking varying doses of Arimidex to control this.
The nipple sensitivity went away, but my mood had dramatically worsened. I felt very anxious, irritable, sweaty, and got worse sleep. My throat felt swollen and caused increased snoring. I worried about getting sleep apnea, which happens to some TRT patients. My sexual benefits faded. My stomach was not handling the injections well, leaving sore welts. So I switched to IM deltoid injections. This must have spiked my T even higher, as IM is generally thought to absorb faster than subq.
By this time, there were some days where my libido was very high, comparable to my late teenage years. But most days I just felt like shit. When I finally was able to get a blood test, my T measured in the 900s (normally 500s), free T above range, and E2 very low. I adjusted my T dose down to 40mg and lowered the Arimidex. For the next month, I felt mostly as before and quickly lost faith in TRT, at least until COVID was over and blood tests became available again.
So I decided to taper off TRT, gradually lowering my dose over a few weeks, then hopping on 250IU HCG for 6 weeks and gradually tapering off. My balls, which had shrunk on TRT, returned to normal size within a few weeks on TRT. The TRT side effects went away as well, except for the increased snoring, which I still have. In total I was on TRT for just over 3 months.
Lifestyle changes - improving cellular energy metabolism
In the weeks after ending my PCT, my PSSD returned to baseline. All benefits I experienced while on HCG and TRT faded. I had been reading a lot of
Dr Peter Attia's stuff on diet, blood sugar, and energy metabolism which resonated with me. I've had pre-diabetic warning signs for years show up in blood tests, and have felt that since PSSD I've had worse tolerance for carbs. I have been eating a low-ish carb diet on and off for a few years, but I decided to take Attia's advice seriously and implement some lifestyle changes.
In a nutshell, I began testing my blood glucose after meals to ensure I avoided going over 120mg/dl. This necessitated a strict low carb diet (not quite Keto but almost). I put emphasis on two types of exercise: weight lifting to failure to drive muscle glycogen depletion, and "zone 2" cardio which drives fat oxidation. I began a 16-8 time-restricted feeding regimen (only eating between 11am-7pm). I did a few 24hr fasts. All of this would have in theory lowered and stabilized my blood sugar levels, as well as alter my cellular energy metabolism to be more efficient utilizing fat, thus providing overall more energy sources for cells. I suspected I could improve fatigue by improving my cellular energy metabolism. I also thought that this lifestyle would provide healthy changes to my gut microbiome.
I did not implement all the lifestyle changes at once, but gradually over 2 months. I started with focusing on diet in the first few weeks, which began about 2 weeks after finishing my PCT. About one month later, I noticed improvements in my PSSD. These improvements increased for another month, and have remained steady for the last month.
It's hard to tell if the improvements were due to my time with elevated hormones, the lifestyle changes, or both. If I had to guess, I'd say both.
Speculation
Various people have theorized that upregulating central nervous system androgen receptors would cure some of the sexual issues in PSSD. Studies have shown that AR can be upregulated with supraphysiological androgen levels. While bad for prostate cancer risk, this may increase brain activity regarding sexuality under normal hormone levels. There are some studies suggesting SSRIs can alter AR function, however the evidence is still scant. Given that my androgens were elevated for around 7 months, and supraphysiological for at least 3 of those months, this theory could explain my current improvement in symptoms. It is strange that for the first few weeks after the PCT, my improvements were lost, only to gradually return in the following months as I implemented lifestyle changes.
On the lifestyle changes, one must dig into cellular metabolism, diabetes, Alzheimers, and Chronic Fatigue Syndrome to see connections to PSSD. Dr Petter Attia's blog and podcast contain a wealth of information on these subjects, which I highly recommend. To summarize as best I can, I have seen similarities to PSSD and CFS, as well as indicators of poor blood glucose control in myself and other PSSD patients. These various lines of evidence hint at deficits in cellular energy metabolism, which is linked diabetes, Alzheimers, and CFS. There also may be a gut microbiome element to these diseases, that responds positively to these same lifestyle changes. There may be improvements in physical and mental energy/fatigue, as well as hormone health associated with these lifestyle changes. I believe most PSSD patients could benefit in some areas by emulating Peter Attia's lifestyle. Like PSSD science, the science of cellular metabolism and how it connects to other systems of the body is in its infancy, but there are enough links to PSSD theories that I think it is very important to study.
So, could my improvements have been solely due to elevating hormones, and it was a coincidence that my improvements happened as I made lifestyle changes? Yes.
Is it possible the elevated hormones caused no permanent changes, and lifestyle changes caused my improvements? Yes.
Is is possible both of them contributed to my improvements? Yes, and this is what I believe is most likely.
With all this in mind, this is now my PSSD timeline. You can read the rest of this thread for more details. It's tough to say what was due to lifestyle changes, meds/supps, or natural recovery. But I believe every part mattered.
PSSD timeline
- 2012: got it.
- 2013-2015: miserable and hopeless.
- 2016: certain events changed my attitude to do hard work and fix myself.
- 2017: first significant improvements.
- 2018-2019: gradual significant improvements.
- 2020: dramatic improvements, 80% back to normal
My plan going forward is to continue these lifestyle changes for the foreseeable future, perhaps the rest of my life. I have no plans to take any more medications/supplements/hormones for PSSD. I am hoping my improvements will remain into next year, where I plan to get vaccinated and start dating. I will provide another update sometime next year on how it goes.
My advice to anyone reading this wanting to emulate my trials is to start with lifestyle changes first, as it's practically free and low risk. It will take a lot of effort and discipline but it's worth a shot. Regarding HCG and/or TRT, only try that after you have given all your effort towards lifestyle changes, and also wait until COVID settles down so you can actually get blood tests frequently to avoid the hormonal rollercoaster I went through.
I am happy to answer any questions here or on the PSSD Support Discord.