When reading about the experiences of people with Post-SSRI Sexual Dysfunction (PSSD), one of the common themes is the difficulty that some sufferers have faced in trying to obtain a formal diagnosis. However, this isn’t always the case. There seems to be a disparity between the experiences of different PSSD sufferers when engaging with the healthcare profession. The same holds true for Persistent Genital Arousal Disorder (PGAD), Post-Retinoid Sexual Dysfunction (PRSD), and Post-Finasteride Syndrome (PFS). The question is – why?
Some people describe seeing numerous doctors, all of whom denied any knowledge of the condition and refused to believe that ongoing sexual dysfunction could be caused by an antidepressant, by isotretinoin, or by finasteride.
But others have found it relatively straightforward to have their dysfunction attributed to the previous use of a medication. Obtaining a diagnosis involved little more than seeing doctors in their local area through normal channels. In fact, some patients have been surprised at how many doctors do know about it.
This disparity is reflected in official sources.
PSSD has been documented in the medical literature for over 11 years. But the papers have largely been in highly specialized journals such as the Journal of Sexual Medicine or in less well known journals rather than in BMJ. Mind, one of the UK’s biggest mental health charities has warned about the problem in their literature since 2008. The US Prozac leaflet has contained information about persisting sexual side effects since 2011 – although surprisingly not about duloxetine. Two review articles were published in 2017 – the first by Reisman and the second by Bala et al.
Alongside all of this, there is an increasingly impressive body of literature on Post-Finasteride Syndrome as well as FDA warnings about finasteride products which have added to the evidence that medications can cause persistent sexual dysfunctions. PRSD has been less well served.
The Diagnostic and Statistical Manual of Mental Disorders is published by the American Psychiatric Association. It gives a compendium of current psychiatric diagnoses and treatment in the United States.
The latest edition (DSM-5) published in 2013 contains a section on substance/medication-induced sexual dysfunction. Page 449 states –
“In some cases, serotonin reuptake inhibitor-induced sexual dysfunction may persist after the agent is discontinued.”
You can see a copy here. Try printing it out and taking it to your doctor. We’d be interested to hear how they responded.
Who is listening?
When it comes to finding a health professional who is willing to listen, it’s fair to say there’s probably an element of luck involved. It may also depend on the specifics of your case such as your medical history, the onset of your condition, and any other symptoms that you might have. For example, a PSSD sufferer with ongoing depressive or anxiety issues is perhaps more likely to have their sexual dysfunction attributed to a nervous disorder, compared to a patient who has no mental health issues.
It may also depend on the type of doctor you see. Some people seek out psychiatrists in the hope that they will have the best understanding of what has gone wrong. But psychiatrists are no better when it comes to antidepressants than dermatologists are when it comes to isotretinoin. Primary care doctors are often better. However, it has been the experience of some sufferers that urologists have often been more familiar with the condition. They haven’t always heard the term “PSSD”, but they’ve sometimes seen and diagnosed patients in their clinics who have been left with persistent sexual dysfunction after using antidepressants. But urologists sometimes have problems believing finasteride could cause this problem.
In some ways, it may be easier for a patient to get recognition of PSSD rather than withdrawal, and this has certainly been the experience of some sufferers. It may be partly due to the medical literature, but also because PSSD can be more easily disentangled from any problems that may have led to treatment in the first place. Sufferers typically have completely normal sexual functioning prior to taking the medication, whereas severe withdrawal can contain strong depressive and anxiety symptoms which are more easily mistaken for an underlying illness.
There are a few practical steps that may improve your chances of being listened to.
If you are being referred to a specialist, you could try sending a letter first. Ask if they are familiar with the condition and whether they have come across it in their clinic. If they answer unfavorably, this might save you a wasted trip and avoid having something negative added to your medical records. It could also save you money if you are paying for the consultation.
Another option is to write to urologists in your area to ask if they have any knowledge or experience of the problem before arranging any appointments. Hospitals often have websites with information about their medical staff, which may include special interests. Look for those who deal with sexual matters. Men might want to look for the term “andrology” which refers to men’s health and would generally include sexual problems.
For women it may still be worth writing to those who have an interest in andrology. At the moment, we don’t know how receptive gynecologists are to the issue. While PSSD affects both sexes, men seem to more commonly report the problem and may be more likely to seek medical assistance. It’s therefore possible that those who deal with male dysfunction may be more likely to have seen the condition than those who deal exclusively with women’s health, though it’s difficult to know for certain. Women, in contrast, seem more likely than men to present with PGAD.
Psychosexual therapists may be worth contacting. Some of them have seen people with these conditions and may acknowledge your problem is pharmacological and not psychological. The first recognition of these issues came with the description of PGAD by a therapist.
During any consultations, it’s important to be concise. Appointments are often very short and if not to the point, you may lose out. Prepare what you want to say beforehand to make sure you cover all of the important points.
If you are experiencing genital anesthesia and pleasureless/muted orgasms, these are important features to mention as they don’t occur as part of depression or anxiety. If you’re a man and have a loss of nocturnal erections, this is also useful to mention as it indicates the likelihood of a physical problem rather than a psychological one.
Trying to make your case by talking about big pharma, internet forums, Facebook groups or people that you’ve met online, is unlikely to be helpful. Doctors are more likely to be receptive to hearing about the medical literature. Rather than just telling them about it, you could try printing it out. They won’t have time to look at it all during your consultation, but you could leave it with them to look at later if they seem interested.
If everything fails, don’t forget that it isn’t just your doctor who can decide if you are experiencing an adverse drug effect. You can make this decision for yourself by reporting it to your country’s drug regulator. In some cases, the drug regulator can send a copy directly to your doctor if you provide their details when reporting. If this isn’t possible, you could print out a copy and either hand it to your doctor, or mail it and ask for it to be placed on your medical file.
We would be interested to hear if you find any of these points useful or if you have any others. If we can understand why people are having such different experiences when dealing with health professionals and why some are more successful in obtaining a diagnosis, we may be able to figure out the best way to engage and interact with the system when reporting not only PSSD, but other problems as well.