This anonymous post stemmed from a RxISK report, which came in following A Time for PSSD last week. If anyone else, female or male, has started an antidepressant before or early in puberty with things not working quite as a result – anything from being asexual through to intrusive uncontrollable orgasms – you can file a RxISK Report . This will keep everything you mention confidential. If appropriate we may be able to connect you to the author of this post and perhaps create a forum for others in this position.
Anyone with ideas about what might help can comment as usual at the end of the post.
Too Young to Know
I started taking SSRIs when I was about 12. I was very depressed and anxious, and a plethora of drugs was tried before settling on sertraline.
When I started to become sexually active as an adult, I wondered why I could never have an orgasm. I also wondered why my sex drive was lower than other people I knew, despite being interested in sex. I faked it with an ex, and eventually decided maybe I should start trying to figure this out. I tried masturbating, which did literally nothing. I spent months trying different vibrators and eventually achieved it! But unfortunately, it takes me a while even with a vibrator and I have never come close to orgasm with a partner. It’s hard for a partner to even use a vibrator with me because of how long it takes and how specific the movements need to be – it feels like something I can only do on my own.
I never had a sexual awakening. I’ve been on this drug since I went through puberty so it’s hard to know how much is me, and how much is the medication. However after reading countless peer reviewed papers on the effects of SSRIs on sexual function I’m convinced the drug is to blame. The worst part is these changes can be permanent and I fear that they will be for me. I’m almost all the way off sertraline and I’m seeing no change. I have no frame of reference, so I can’t compare my progress to a sexuality that was once there. I have nothing to miss! But I still feel I’m lacking a key aspect of intimacy that other adults can take for granted. I enjoy sex, but sometimes I wonder if it’s worth it since it feels uneven, and because there is always a risk of pregnancy. I want love and a relationship but it’s very hard to have that without sex – furthermore I do want sex, I’m not completely asexual. I just want to enjoy sex to the fullest, and to experience the intimacy of sharing an orgasm with a partner.
A lot of people with PSSD describe genital numbness, and I wonder if I experience this too – but I can’t even say, because I don’t know if I ever was able to feel more! Maybe I would naturally have far more sensation, but I literally have no idea. I’m lucky I can orgasm at all, but I still get sad when I think of what I’m missing, and it makes me question if I should be taking the risk of a relationship, even though I do really want one, sex and all.
I’ve talked to a lot of doctors about this. Often they just say “you’re going down on the medication? Well, depression and anxiety can also cause sexual dysfunction” even though I’m going down on it by half doses over the course of over a year now, under the supervision of my psychiatrist. My psychiatrist likes to remind me that sex is also very psychological. A lot of doctors/therapists think I’m repressed or ashamed, which, if true, is a result of my difficulties, not the other way around.
When doctors do believe that the SSRI is causing my difficulties, they just tell me that coming off it should help – but it isn’t! Knowing that PSSD is a real thing, and that it’s actually not too uncommon among long-term SSRI users is helpful, because it’s something I can tell my partner to explain my issues – plus, if it’s a real disorder it’s not just “how I am” but something we can work together to overcome, like any other illness or injury that would affect my sexuality.
The fact that I have these enduring sexual side effects, that I developed without even noticing due to my young age on starting the drug makes me very frightened as to what else could be affected. I’ve read that these drugs can cause long-term changes to synaptic activity. When rodents are administered SSRIs at a young age, behavior in adulthood is affected! What if it’s not just my sexuality that’s been impacted?
I’ve always been a “depressed and anxious person” – it feels like a part of my personality that even SSRIs have not fully solved. I think to a large extent this really is true – the way my thinking works is unusual and distressing probably naturally. Still, I wonder if the changes to my brain caused by SSRIs have some role in how hard it’s been for me to come off of them.
What gives me hope is that I know as a student of neuroscience how plastic neural networks are – drugs aren’t the only things that can change them. With healthy coping mechanisms, therapy, journaling, positivity, and self-love I’m hoping to also cause long-lasting neurological changes – for the better. I am not a rodent, so I think I have a better shot for improvement than the animals in the studies. I don’t know if my sexual issues can ever be fixed, some people never improve… but hopefully I can at least improve my anxiety and depression naturally, without the external chemicals I’ve been dependent on since I was young.
I’m lucky that I can orgasm at all, because with the right partner and a positive attitude I can accept my unique sexual needs and still enjoy sex and even experience orgasms with someone else, if they are comfortable with using a vibrator. Lots of women don’t even have that, unfortunately. It’s scary knowing that my brain has been altered, possibly permanently, but the fact is that this happens to us all the time, drugs or no, and I can work with what I have and love my body for what it is. I don’t blame anyone for putting me on the drugs – I was borderline suicidal, mental illness is in my family, etc.
But I do blame pharmaceutical companies for being uncaring about the risks and under reporting them. The psychiatrist didn’t know, my parents didn’t know, but reports of these issues have been around since the 90s, so I feel that the drug companies should’ve known. Maybe there was no choice but to put me on the drug to keep me alive, but I don’t think I should’ve been on it as long as I was. Once my depression improved and I began therapy and worked on myself and my coping mechanisms I think I should’ve started going down on it. This would’ve been as soon as 1-2 years after starting it. Maybe if I had gone off it sooner, this wouldn’t have happened, or it would be less severe.
Even going off it almost a decade later, when I am in no way suicidal (and in fact have a near-debilitating fear of death!) has been met with a lot of pushback from family and doctors. I’ve fought what sometimes feels like my better judgement to go off this drug, but I’m almost off it now and I’m doing no worse than I was while I was on it, despite the global pandemic! It’s been a slow process and I’ve gone back up on the dose a few times, but now that I’m almost off it I don’t feel much different than I did before. Depression and anxiety has always been a part of my life and my psyche, it’s no worse now. I’m still holding out hope that once the drug has been completely out of my system for a while I will finally gain my full sexual function.
Who knows what the future holds, but writing this has made me feel a lot more positive and made me realize that this problem is not insurmountable, and is in fact much less than the problems that others on SSRIs have experienced, such as complete anorgasmia.
I would tell anyone else planning to go on SSRIs to try therapy first, and a change to life situations.
I also think SSRIs should be avoided in children where possible. I would also highly recommend they take another type of antidepressant such as bupropion, which does not have sexual side effects (although as all drugs, likely has some unsavory side effect that I don’t know about).
Not everyone’s depression can be improved with “positive thinking” but I think the fact that depression rates are rising exponentially shows that this is, to some extent, a situational or social phenomena, which I personally believe to be impacted by the isolation our society causes through capitalism, individualism, and social media, as well as a possible social contagion. This means a lot of people are going on this drug unnecessarily, and gaining lifelong impacts as a result. Some people really do need SSRIs to save their lives, or have any kind of quality of life and that definitely makes the risk of anorgasmia (and who knows what else) worth it – but I do think they are over prescribed and most importantly prescribed as a lifelong solution when they should be a temporary one at most.
To others who grew up on SSRIs and are upset by what they’ve found online about the possible permanence of the side effects – I want to repeat what gives me hope, which is the fact that our brains are plastic for our whole lives, and even our patterns of thinking and our coping mechanisms can cause changes! Maybe coming off the drug will not cure or even improve our sexual dysfunction, but the way we see it and cope with it can be greatly improved with just therapy and healthy thought patterns. Also, we are not rodents.
It’s possible that since going down on sertraline I have less brain fog. I am in no way confident that this not just coincidental with me getting older and improving coping mechanisms. Since becoming an adult and being in charge of my appointments, getting to class and work on time, etc., I’ve noticed that I struggle with this stuff – horrible memory, completely forgetting things constantly, even really important things! I had a lot of symptoms of ADHD in women in fact, so I figured I had under the radar ADHD.
But, since I’ve gone down on the sertraline this has not been happening. I’m not missing appointments that are important anymore. I’m not “blind” to things I set down, I’m not constantly losing things. My thoughts feel oddly clear, in a completely new way to me, and I have been noticing this for months now. I think it’s most likely a coincidence, but after reading reports of brain fog on these meds a tiny teeny part of me wonders if it could be related.
Illustration: No Sex Please! (We’re on antidepressants). Based on 17th Century Kama Sutra and Ragamala paintings. © 2014 created by Billiam James.
Extra Note for Comment
One of the wider PSSD group noticed this on Reddit recently. There have been several comments to this effect. We would be interested to know if anyone else finds pelvic floor exercises helpful. Comments from anyone who has tried and found it makes no difference would also be good to get.