Exploring sexuality during prolactinoma treatment

[JamesO]

At the start of the year I was diagnosed with a prolactinoma. As far as I can tell I’ve had it since I was about 11 and went through a period of thinking I was asexual prior to finding out. I’m now pretty sure I’m not ace but reluctant to claim any other label for now.

After 11 weeks of taking cabergoline I’ve noticed some changes, I definitely get erections more frequently and they sometimes include precum which is something that’s never happened for me before. On the other hand I don’t really ever get aroused and when I masturbate I’ll usually manage to ejaculate but I’m not sure if I’ve ever actually had an orgasm.

I guess I just have to wait for my prolactin level to be lower but I get kinda worried that even afterwards nothing’s going to do that for me.

[Heather]

Hey there, James. I am happy to talk with you about this, but I first want to hear what advice my partner -- who went through this same thing themselves, including not knowing for a while and having sexual impacts they didn't know were from the tumor -- would have to share, since they have been though exactly this, and also manage their prolactin levels and the tumor with medication.

[Heather]

So, here's what I have from my partner for you just so you can see what someone would share who uses the exact same medication (and has now for two and a half decades or so), with the exact same condition, etc:

Diagnosed at 25, I had elevated prolactin since probably around 17-18. At diagnosis, My prolactin levels were at 3800. Normal for a pregnant person is 300-500. Normal for someone like me with XY chromosomes is 12-15.

I wasn’t having spontaneous erections. My desire for sex was 0. I barely masturbated.

I started a hormone inhibitor that crushed the prolactin and elevated testosterone. I cried my eyes out all that summer. Then, my libido went through the roof.

All the years since, even as someone with low testosterone counts, my sex drive remained what I'd consider "normal."

Some quick research shows a recent study that low prolactin levels can suppress sex drive when it’s below normal. I have not experienced that.

That all said, worrying that things won't really change that you want to sexually is totally understandable. It's hard to wait through medications that take a bit, and it can also be hard not to feel a way sexually we want to be feeling. On top of that, it can certainly be hard to sort out what's a sexual identity for you when what your body is doing is changing.

[JamesO]

Thank you Heather, and your partner too.

It’s good to hear that someone in a similar position to me got through it. Hopefully I just need to be patient a while longer before it works for me too.

[Heather]

Happy to help. I also didn't note your age until after I posted: I am so sorry you have had to wait so long for your diagnosis and treatment!

[JamesO]

Thank you. I honestly had no idea that anything was wrong until quite recently, guess I had it so young that I had no concept of what I wasn’t feeling.

Thankfully I had a blood test this week that shows my prolactin has gone down from 8,300 to about 1,000 so the cabergoline is definitely working.