Editorial Note: This is a post by the partner of someone going through the persistent sexual dysfunction that isotretinoin can cause. It could be caused by an SSRI or it could be caused by finasteride. It could be a man supporting a woman, or a woman supporting a woman or any partnership.
In June 2013 I met the love of my life, although I didn’t know it at the time. We were inseparable after the first time we hung out. He would tell me every day how beautiful I was, our sex life was great, and the affection was constant. In September of the same year he, in his early 30s, decided to start taking Claravis, a generic form of Accutane. We did some research on the product and although I was hesitant for him to take the medication I told him I would support him with his decision. We obviously didn’t do enough research. His acne was pretty bad though and he had tried almost everything so he was willing to do almost anything to make it better.
The side effects were gradual, but never ending. His skin became so dry you could almost see scales underneath the top couple layers. He lost weight, a lot of it. He’s 5’11’’ about 145 lbs, so he didn’t have any weight to lose. He didn’t have much of an appetite, but I made him keep up with his eating because the weight was coming off regardless. We met playing volleyball in a league, but even that became rough on him. His joints ached constantly; he couldn’t jump like he used to; his recovery time after a tournament was doubled or tripled from before; everyone noticed how weak he was yet he kept pushing himself to play harder and better.
Next came the hemorrhoids, the boils on the inside of his leg and the bloody urine. “Oh that’s normal. You’re fine,” the doctor said, without any questioning. He has eczema also and that began to flare up because of his dry skin. Only now did we start to see a change in his acne. Of course it had to get a lot worse before it ever started to get better.
After about 3 or 4 months of taking the Clavaris he scaled back to taking one pill every other day and 2 pills on the other days. Doctor’s orders were to take it twice a day, so I got very upset with him. He was on the medication until May 2014 which wouldn’t have been so long had he taken it regularly, but the doctor kept extending his treatment. His skin became clear, so he was happy. His body slowly regained its strength and stamina. He now recovers quickly after playing in a tournament. His appetite is back and then some. The hemorrhoids, boils and bloody urine are long gone. His eczema is even getting back to its normal state.
That was his personal, physical side of the medication. Now for the emotional. He never really got depressed or down on himself, just tired and a little upset at what he was going through. Some days he said it was worth it, other days he said it wasn’t.
Throughout his medication, the ‘you’re beautiful’ statements slowly stopped. And so did the sex. We had regular sex until about January, but after that it was once a month, then once every two months. Now, it’s been once in the past 7 months. We haven’t even had a good ol’ make out session within the past year. He proposed in June 2014, a month after he stopped taking the medication. I of course said yes although the sex was pretty much non-existent at that point. I thought, ‘It’ll come back…’.
Our wedding is supposed to be 7 months away, but a week ago I told him we would be postponing it because of the emotional state we were in and the lack of physical connection. He didn’t take it too well, so we decided to try counseling. We’ve had one session so far, and it went well, but how is a counselor going to get his sex drive back? The counselor put it well when he called what I’m experiencing as ‘rejection’. That’s exactly it. I feel rejected, unattractive, like I’m not good enough or not doing enough to make him want me. To my fiancé it’s all chemical imbalances, but for me, I think it’s me. I think something is wrong with me and it is so difficult to tell myself otherwise.
I have no idea what my fiancé physically experienced when he took Clavaris, but I saw everything that he went through and it broke my heart. I was by his side every step of the way. I tried to provide, support, give, do, act, etc. all the ways I needed to to make the process easier for him. Now that he’s off the medication I don’t think he realizes what all I had to go through as well. I was a constant support system for him, but I had no support. No one knew he was taking the medication, but since then we’ve told a couple people. Talking about it has helped a little, but no one is able to understand what I, as the significant other, am going through now that taking the medication has ceased.
He started testosterone and HCG shots about 3 or 4 months ago. Those have done nothing. His iron is low, his vitamin D is low. The shots have caused his estrogen to get too high so until those can balance out he probably won’t have his libido back. How long until we see if Viagra or something will work for him? The majority of what I’m reading now, he won’t ever get his libido back. I hate what he went through and if I could do it all over again I would have put my foot down back when he was considering it. I’ve brought wedding planning to a halt. It’s a destination wedding so that makes everything a lot more time sensitive for those needing to travel.
I feel like I’m to the point where my insecurities are too much and my feeling of rejection is past the point of feeling wanted again. I know he loves me, I know he does. And I love him. And I want to spend the rest of my life with him, but how does one have a successful marriage without a physical, intimate connection? I don’t know how much more of a support system I can be without the affection or physical connection that we had experienced in the beginning. I don’t want to give up on our relationship, but right now the commitment of a wedding isn’t something I’m willing to go through considering our mental, emotional and physical state with each other. And if we don’t work out, will he ever be able to have a normal relationship with anyone? How is that supposed to make me feel knowing he may never be able to find anyone that’s okay with his chemical imbalance and he ends up spending the rest of his life alone?
I don’t mean for my story to come off as ‘boo-hoo me’, but more voices need to be heard. Voices of those who have taken the medication, and voices of their significant others. Doctors need to be more willing to face the facts and give all the details to their patients regarding the severity of taking this drug.
I feel bad for the both of them. Accutane is pretty strong stuff. Maybe give Requip or Mirapex a try. Those increase libido (sex drive) beleive you me.
My ex-wife ultimately left me over long-term sexual dysfunction from Accutane.
She said it didn’t feel as if I was attracted to her.
I tried hundreds of treatments, from hormone replacement therapy to natural supplements, diet changes and intense exercise. A “cure” for this sounds like a sick joke at this point.
Sexual symptoms aren’t even listed as official side effects, doctors still often laugh at any patient who is bold enough to claim they are linked to Accutane, and there seems to be no end in sight.
That is the current state of the situation.
I didn’t mean to hurt you’r feelings and in no way am I making light of your situation. I’m sorry about what happened. Mirapex has boosted my sex drive, confidence in having sex, constantly wanting sex. Although the wanting it too much has caused some friction in my relationship w/gf. I’m only making a suggestion and wouldn’t joke about your condition. Other then that I am at a loss
There’s a Dr. Fred Berlin @ Johns Hopkins. Hes a world known expert in sexology and deviant sexual behavior. He has been on many TV shows IE American Justice, science shows. Google him. Give it a try. It couldn’t hurt. Try to obtain his e-mail address. I’ll look for your posts. Good Luck. I’ll do anything I can to help you out.
Jay, no offense taken. I was simply referring to how often many treatments, which are considered effective among the general population, are recommended to post-Accutane sufferers only to do absolutley nothing or only improve symtoms marginally above baseline. Worst-case, they may add new side effects.
It’s like Accutane does its long term damage on a whole other level than standard pharmaceuticals are meant to treat.
See Buried Alive: PSSD
PSSD is worse than hell, worse than death, and I do not say that lightly. It is a curse that makes me feel death is much preferable to the constant, grinding, hidden misery of my current existence. I am not even ‘depressive’. I am simply not whole anymore.
Thanks to a 26-month course of Citalopram then Fluoxetine between 2011-2013, my once-immense libido feels completely and chemically destroyed. All excitement suddenly and unexpectedly excised. I am a very loving 40-year old male who thrives in longterm relationships and over the last few years, I have felt like only half a man, attractive to and attracted to women yet without any sexual capacity. All thrill is dead. All recent relationships have failed due to this factor.
I am in a deeply loving relationship with a very special woman right now, I have been honest and told her and she has been amazingly supportive yet I fear failure further down the line. She is amazing in every way, she is a gift from the gods and every time I fail her, more and more of me dies inside. We are so close and in tune but I feel so sad for her, defeated, part of me wants to let her go and find someone ‘complete’…I know she loves me deeply and does not want this but inside I feel like some tragic, pointless monster, feel like I’m holding her back. I put a brave face on but it is killing my heart, my soul.
Many would say “be thankful to be alive”. I cannot live this way. I want us to be complete. Losing that thrill is losing possibly THE main motivator of life for me…no excitement, no reward, yet I still have the extremes of attraction and emotion. The frustration of this limbo…the fact I still have it over 18 months after discontinuing the meds…I cannot take it much longer….I do not want to lose this person.
Despite all the above, I am a positive person and will try to live on in hope.
Heartbreaking. Just like how my life has been broken by these pills. There must be millions of us.
Perhaps the donations button should be put front and centre on the home page, emphasizing that you are a charity. Perhaps the link should be publicised across all the SSRI discussion boards. Perhaps a specific PSSD research fund should be set up. It seems that this is the number one issue and the number of potential donors is immense. Just a thought.
Are you a victim yourself?
God Bless you! Only one who has consumed a PSSD/PFS/PRSD drug can understand the pain of the other.
I completely relate to this story. I have Post-Finasteride Syndrome, from taking and stopping Propecia. Similar persistent side effects remain. Your story is devastating to read and it highly resonates. We need a more open and ongoing dialogue concerning what drugs can do to your physical health, mental health, emotional well being, sex life, social life, career and relationships in the long-term. It is criminal that people suffer from these conditions while more prescriptions (with unknown side effects) are rushed onto the market for financial gain. No one (doctor, label on medication) ever indicated that certain drugs can alter your brain chemistry over time. Doctors too easily prescribe medications because they simply do not know anything about them.
Check out the link. Why do we not get warned of this? I had four regular women on the go and anything else I could lay my hands on before I took antidepressants. I have not taken an antidepressant for years now. My free testosterone is 4.3pg/ml. Life ruined.
Bill, I don’t know if you’re still linked to that page, but it would be very important for me to contact you and help me with some information. I am 28 years old and I did the treatment with ISOTRETINOIN on two occasions: The first was at 15 years of age and the second at 20. Currently I feel terrible and in the country I live, the treatments are difficult to access. It would be very supportive if I could exchange a few words with you. I feel very bad.