Accutane Sufferer Got Libido Back

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.

8 Likes

Thanks for posting old buddy. It’s good to hear of someone who was active in the post-Accutane club many years ago is doing so much better. I have heard of a small handful of other PAS patients having luck with TRT as well.

I’ve thought about trying high-dose TRT since I at least don’t seem to have a bad reaction to raising T (usually no effect whatsoever). I’m hesitant because my Free-T has been over the range high with total T in the 700s and ideal E2 and DHT and still felt as bad as usual.

Forgot to ask: Did you have genital numbness as a symptom and did it improve on your refined TRT regimen?

2 Likes

I really never felt like I had genital numbness…at least not to a degree that it became a focal point. I do think the new found strong libido made my genitals feel more “alive” if you know what I mean.

I should add that enjoying porn was a big part of enjoying my new found libido. Having a strong libido made me “want” to get off. I’ve read threads over the years warning about porn desensitizing the brain (or something)…that seemed to never be an issue with me.

1 Like

My libido has been absolutely fucked as of late and idk what to do

Did you stay recovered after reintroducing the high T protocol

I never used the word “recovered”. I was describing a treatment option of mine which may or may not be suited for others. For me the high T levels helped significantly improved libido & brought ED from bad to mild.

The bad side of this treatment option is the higher red blood cell count (thick blood) from higher levels of hemoglobin & hematocrit. Also, then the need to regularly donate blood and/or phlebotomy while watching ferritin levels to control the red blood cell counts. Plus the life long commitment of TRT in itself.

PS I am currently off TRT & my libido back to near zero. I use Trimix for sex but it has no effect on libido. If I was single, I would def have stayed on TRT & enjoyed the great libido. Just pros & cons with this protocol.I’m not ruling out TRT again in the future but that is where I’m at right now.

1 Like

What were your total and free T levels before and during treatment?

1 Like

Sorry I should of just asked are your sexual sides still mostly recovered from the high T protocol…

Ok so after you reintroduced the high T protocol it worked again as far as mostly recovering your sexual sides again ? And then you stopped again and your improvements went away again?

How long did you stay on the high dose TRT protocol after reintroducing it last and did you see the improvements the whole time you were on it ?

It’s a shame that feeling mostly normal while on the high dose T protocol especially for an extended period of time can’t stick when you come off. I know you are PAS but I think the reason why a lot of the PFS guys who were not hit that hard recover is because constantly increasing T with the herbs and DHT with the androsterone nudged their bodies to respond to androgens properly again .

But as a PAS guy if you can stay on that high T dose protocol for an extended period of time AND still experience a major improvement in the sexual sides I still think this is good news. Most PFS people especially the ones hit hard will get either no improvements in sexual sides on a high dose T protocol and if they do most will lose the benefits fast. And now they are stuck with the negatives that you are well aware of that come with being on TRT with no improvement in the PFS sexual sides

So that’s why I’m asking. Can you stay on this high T dose protocol for let’s say a year and get the benefits consistently the entire time ?

I want to know this as well . His numbers .

Maybe he can replicate at least some of the improvements in sexual sides with herb cycling which in theory could keep his T high enough naturally to get those improvements or at least a certain degree of the improvements with out needing to worry about blood clots and all that bull shit. Especially at 50

@DaveK22

Do you already know that let’s say 700 ng/dL total T does nothing for you but let’s say 1050 ng/dL does get you the improvements?

The point is that you respond to androgens to a decent degree . So I feel like you have options. And if you respond to high range T you may also respond to a simple increase in DHT like most of the guys who recover from the CDnuts protocol

Hey what generic brand of levitra did you use ?

Whatever Reliablerx had available. Typically it was Lofatra (Vardenafil) 20mg

@DaveK22 Updates? How are you feeling?

Ok considering. Zero libido after stopping the TRT. I’m 55 yr old & married so heart health is taking precedence over having a high libido. If I was single I’d probably would have stayed on the higher level of TRT and manage it the best I could with blood donations.

Update- I recently decided to go back on TRT…mostly due to brain fog. I’m changing my TRT protocol slightly but it’ll still be higher range T levels. I will update on libido once things progress & I get labs done.

1 Like

Hi, if you reading this can you say how you are doing now?
Prior you had stopped b.c. of hart healt, but low T levels are much worse for hart health than TRT (at least if you donate).
Any other benefits besides the sexual? Like the brain fog you mentioned, sleep, lean muscle mass, mood etc.

Good luck