I am posting my story here to possibly help others, but I know fully well, we all respond differently to treatments so my results may not be the same for others. Also, I am a post Accutane sufferer and as some already know, we share a similar syndrome to “PFS” yet it may be slightly different. Rxisk.org refers to the condition as “ Post-Retinoid Sexual Dysfunction ” (PRSD).
So here is a brief history of my journey with PRSD. I had suffered from cystic acne as an adult. Went on generic isotretinoin in January 2010 at the age of 43. I will skip details of dosing and time period as it isn’t really important for this thread. After developing PRSD, I spent 7 years trying to fix my libido loss, hypogonadism, and moderate ED. So now the good news and bad news…
First he bad news… I tried almost every treatment and protocol that I read about on acne.org and propeciahelp forums. I tried “test boosting” herbs, HCG mono, clomid, TRT (3x for short durations, never more than 6 months), water fasting, HIIT training, etc etc etc. Nothing ever gave me my libido back though. I did successfully counteract the ED by using generic Levitra and Trimix. For the few years prior, I was doing low dose clomid which kept my TT in the 500 range. In the Fall of 2016, I experimented with Enclomiphene in the form of a research chemical. My blood test results were shocking…very high LH & Low TT…a sign of primary hypogonadism. Although I didn’t feel like I had “Low T” and questioned the “research chemical” efficacy, I decided to go on TRT even though I often struggled with the life time commitment aspect of it. I was also fully aware of the many claims on the various forum how TRT did not help much with PFS & PRSD sufferers…and the “androgen resistance” theory.
So all of 2017, I just went on with my life…using Test Cyp & HCG which had me feeling good. I decided to run my TT levels in the upper ref range initially since my past tries with TRT I was in the 700’s range and then maybe titrate down if E2 became an issue. So I titrated my TT up into in the 900’s and E2 luckily stayed in check. About midway through 2017, my baseline protocol became 152mg Test per week (76mg E3.5D) + 1,000iu HCG per week (500iu E3.5D). I also added Cialis Daily 6.33mg (20mg tab cut in thirds) after reading about benefits for high blood pressure….which I always seemed to be a tad high on. I had zero expectations for changing anything with my PRSD, but just hoped to feel even better. I really wasn’t focused on libido changes at all…mostly because I didn’t expect any. I also was feeling very good overall and going to the Doctor and doing blood work was not really on my mind that much.
Now for the good news, and I wish I had paid more attention to timing of all this…in early 2018, and at the age of 51, my libido came roaring back. I believe it happened slowly but before I knew it…I was as horny as a teenager. My libido was probably a 9 on the “1-10” scale. I was either masturbating or having sex at least 1x a day…sometimes I would even do 2x a day. Morning wood became a regular occurrence. My ED became “mild” or maybe it was even normal for my age. I would occasionally get random erections and fairly easily get hard from some manual stimulation. However, I still used my generic Levitra or Trimix out of habit and maybe for even ego reasons. I honestly didn’t really correlate any of this to my TRT protocol…I really thought that it maybe was from the Cialis daily, if anything. But at one point, I ran out of Cialis & had to wait a few weeks for my shipment to arrive from Indian pharmacy…I do not recall any libido changes during those few weeks. I also started thinking that maybe my PRSD was possibly now gone.
In December 2018, I started thinking about going off TRT and doing a restart, then maybe going back to a low dose clomid mono protocol. Much of this thought was being driven by the “life long” commitment concern I was having and maybe I was done with PRSD. My main concern was with how I would feel with a possible lower TT levels again. It really never occurred to me that libido could go down too. So in mid January, I went off TRT and did a restart. I kept taking Cialis daily though.
After the first week, my libido went from about a 9 to about a 3. After 10 days, it was basically zero. This obviously was very depressing after the past year of a very strong libido. Over the next 5-6 weeks I waited to see if libido would return while transitioning from TRT to low dose clomid mono. I knew that for 7 years prior my libido was basically a 0 or 1, that the odds were against me. My energy level seemed to not drop too much and my strength in the gym dropped a bit…but the libido loss was the biggest change. I decided to go back on my TRT after 6 weeks.
As of the date of this post, I’ve been back on TRT for about 2 weeks now…resuming the same protocol where I left off. My libido seems to be slowly creeping back up…to about a “3” as of now and I’m getting good morning wood again. I’m hoping it doesn’t take a year to get back to the 9 though…hoping much quicker since my TRT break was only for 6 weeks. After 6-8 weeks on TRT, I plan to do blood work to get back into that routine of monitoring my hormones effected by TRT, ie E2, SBHG, hematocrit, hemoglobin, etc.
In summary, I truly believe the high Test levels was the key ingredient for my libido returning. If it was solely from the Cialis daily, then one might conclude my libido would have remained even when going off the TRT and doing the re-start. I’m accepting now (at least for me) that being on TRT for life is better than life with no libido. I am resuming my TRT protocol and hope that my strong libido returns (I suspect it will) to the “9“ level. Once I achieve this, I may stop the Cialis daily to see if or what effect on libido it may have had.
Hope some or all of this post can help others in some way.