Editorial Note: This extraordinary post from Spiros might help explain the very similar problems that follow SSRIs, Finasteride, and Isotretinoin. There have been several other reports to RxISK of comparable problems on rivaroxaban – Xarelto. This drug causes many more problems than the sexual one described here. We would be interested to hear from anyone else suffering from this or other problems. The main source of information on the sexual problems is Spiros’s website listed below.
I was prescribed Xarelto (rivaroxaban) for deep vein thrombosis (DVT) following a treatment with heparin injections.
DVT was caused by immobility after a fibula fracture. The fracture was the injury.
At the time, the doctors did not warn me about the risk of DVT, not even following a visit to the emergency department 2 weeks after the fracture with an extremely swollen lower extremity. The result was that my residual oedema and discomfort was misdiagnosed later as lymphoedema by a physical therapist and I had physiotherapy, and only after 1 year following the fracture, when the oedema was still unresolved and I visited ortho Dr No 6, was I instructed to have a vein ultrasound which revealed extensive femoral and popliteal DVT. The failure to alert me about the risk of DVT, the ensuing non-diagnoses and the misdiagnosis, was the insult to injury No 1.
Three weeks following the heparin injections I switched to Xarelto, as the doctor upped the heparin dosage to a very high level for my weight (I was 65 kgs and I was prescribed a dosage for someone who is 100 kgs) which resulted in lightheadedness, listlessness and inability to concentrate.
About two weeks into Xarelto, and in a matter of 2-5 days, everything about my sexuality changed drastically. Spontaneous erections disappeared and nocturnal/morning erections became extremely feeble and shortlived (when, previously, morning erections were so strong so that often I would have to spend time waiting them out in order to urinate despite the strong need for urination). Reaching and holding a half-baked erection required great effort and it would go down immediately after discontinuing stimulation.
Takers of SSRIs describe genital numbness. In my case there is no genital numbness—If I pinch myself I do feel pain—but lack of sexual sensation and sensitivity. Another strange symptom I have been having, which is especially noticeable when sitting or lying down, is a “trembling” sensation, as if a low-intensity electric current is running through my penis. Moreover, sometimes, following an orgasm there is a lasting feeling of discomfort in the genital area, bordering on mild pain.
Interest in the opposite sex disappeared completely. Seeing a woman was like seeing a painting or a landscape; the aesthetic value was completely dissociated from triggering any sort of desire. Sexual stimulation resulted in very feeble erections with premature ejaculation and pleasureless orgasm. The hedonic aspect of the orgasm was not much different to urination—no pleasure at all. In short, serious erectile dysfunction of abrupt onset accompanied by a complete loss of libido and muted orgasms. For me, it could be summed up as chemical castration and it was experienced as some sort of weird altered state of consciousness, that of a totally desexualized being. This was the insult to injury No 2.
I did not like it one bit, but I was convinced that my deep vein thrombosis was a very serious issue and the only way to fight it was to continue taking the blood thinners (little did I know then that, most likely, the blood thinners I was prescribed to take could have little to no effect due to my extremely delayed diagnosis of a year after the acute DVT phase).
Initially I thought that, since there was no such side effect listed in the patient information leaflet, and I could not find any related information or similar experience by someone else on the Internet, then it must be a temporary issue, which would resolve after discontinuing the drug.
Unfortunately, as it transpired later, that was not the case. The symptoms persist until now 2 years after discontinuing Xarelto in very much the same way as they originally appeared. There were no periods or instances where the symptoms subsided (and this is one more counter-argument to the fatuous suggestions by some ignorant health professionals of a “psychological” problem).
I even tried abstaining from orgasm for two weeks as an experiment. Before Xarelto, when I had done something similar, it required a great deal of effort and self-discipline in order to maintain the abstention. Now, it was as if I was not abstaining from anything. In fact, it was the opposite, sexual stimulation was a like a chore, which I carried out in order to confirm that, at least on a “technical” level, an orgasm was feasible, no matter the quality and pleasure that may or may not be derived from it. And when I broke the two-week “fast”, the results were bathetic. It was equally difficult, if not even more so, to reach some sort of half-baked erection which resulted in a quick pleasureless orgasm. This, coming as a sharp contrast to what it would have been like before Xarelto.
I mentioned the sexual side-effects to 5 different vascular surgeons (including the well-known British physician Stephen Black); they did not have a clue. One told me that I could switch to a different drug and others said I should see a urologist/andrologist.
I visited 5 urologists and 1 endocrinologist. The urologists saw my hormone and blood works and they concluded that there was nothing wrong there; hence, for them, the issue is “psychological”. The endocrinologist concurred and declined to see the data I had from pharmacovigilance databases where similar issues were reported. He persisted that since the hormone tests did not show anything, then it must be psychological. As if hormone tests and the current state of medical science can detect everything that could go wrong in one’s body. Another urologist I visited said that science does not know all the chemical paths relating to sexuality, so it is possible that the medication affected one of those. Good luck to me with discovering it. At that point, it dawned on me that no doctor would bother with something that was not or could not be documented with current diagnostic tools, let alone research it.
To quote from another post regarding encountering doctors, “the drug has damaged you in a way that is evident only to you who live it on your skin, and not because you are an imaginary madman, but because there are not, to date, diagnostic tools capable of highlighting the damage that you are suffering.”
The above fact, and the attitude of doctors to dismiss the issues as purely psychological, was the insult to injury No 3.
As a result, I had to do the research myself. To start with, I wrote an article on my thrombosis site about the sexuality-related issues with Xarelto which I kept updating as new findings presented themselves.
Some of my first findings were similar issues reported in pharmacovigilance databases as well as the fact that Xarelto is facing numerous law suits for “failing to provide adequate warnings about its serious side effects to patients and doctors”. On March 25th, 2019, they settled for $775 million to get paid out to victims.
It came as a surprise to discover that similar issues (especially muted orgasms) were reported by sufferers of post-finasteride syndrome (PFS), post-retinoid sexual dysfunction (PRSD) and post-SSRI sexual dysfunction (PSSD). And there are some papers on Endocrine Journal and the International Journal of Risk & Safety in Medicine making the connection:
Healy make the suggestion on RxISK of nerve damage, and specifically of c-fibers and repeats this in a presentation regarding sexual problems caused by post-SSRI sexual dysfunction. I was particularly touched by a comment to that video which pretty much echoed my own feelings:
…not only do they destroy ability to experience physical affection. They also stop ability to feel love, empathy, compassion, regret, human connection. They make you a shell of a human being. In fact they take away the essential essence of being human. Beyond unconscionable.
To put all this into context, such sexuality-related issues affect the individual on a scale that goes far beyond the sexual plane:
Brain mechanisms involved in fundamental pleasures (food and sexual pleasures) overlap with those for higher-order pleasures (for example, monetary, artistic, musical, altruistic, and transcendent pleasures).
And this is what I can confirm from my experience. For example, I have lost any inspiration in meditating, playing the piano and composing as I used to do, as well as meeting new people and socializing. It is as if the annihilation of the sex-drive—on the level of desire and the physical level—resulted in depriving life of all its sparkle, enthusiasm and motivation, as if I had been transformed into an empty “shell of a human being”—a flat tire if you will. Existence had become a blunt, tasteless, odourless and colourless experience. A highly-pixellated, low-resolution, black-and-white jpeg in a world of 3-D, augmented reality, high-resolution, fast-streaming phantasmagoria.
Perhaps the grand irony of my case is that a legal drug was the cause of major sexual dysfunction without as much as a warning to this effect in the patient information leaflet, despite leading a healthy lifestyle, eating organic, being a non-smoker and non-drinker; whereas, on the other hand, other individuals, who may have been eating junk, smoking, drinking and abusing illegal drugs throughout their lives, had none such issues. The conclusion: legal drugs, although presented as “cures” are potentially much more dangerous than illegal ones and often, much more expensive. In the words of Karl Kraus: “medicine: your money and your life”.
If you too are facing issues with Xarelto, there is a Xarelto Side Effect Support Group on Facebook but there is no group or forum worth mentioning that deals specifically with sexually-related Xarelto side-effects.
So far, 5 people have contacted me through the article on my site who had sexuality-related issues (erectile dysfunction, loss of libido). So, for all intents and purposes, that is the main point of reference and up-to-date information for anyone suffering from similar issues. And now, it is this post too.