I'm just thinking a lot about this right now (because I'm having a night where I'm really stressed out about never regaining normal function) and I want to share this with you guys to see if it provides any insight or is interesting at all.
I'm female, 33 years old. At 13, I took Prozac for a few years. When I was 15, I was diagnosed with a condition called Primary Ovarian Failure. I never had a menstrual cycle on my own. By the time the doctor tested me, it was discovered that my FSH was through the roof. This essentially meant I was menopausal before being able to have a period. My estrogen was very low as well, and so was my thyroid. This also meant that I would never have my own biological children. I have yet to find a genetic cause for this, however, I do have other health conditions that may have contributed, so I don't really blame the Prozac for causing the condition though it is possible, I guess.
The doctor put me on an estrogen pill and sent me on my way. The estrogen made me terribly sick and caused emotional swings, and I stopped it.
I stopped Prozac at around 16 years old and regained normal sexual function. Actually, I had a pretty high sex drive and very intense orgasms. I have always been a pretty sexual person for as long as I can remember, even while on Prozac as a young girl, though my feeling was muted while on it.
Throughout the next nearly 20 years of my life, my doctors would have me try different forms of estrogen and progesterone both.
Anyway, finally, in my late twenties, I found a low dose estrogen patch worked for me. It provided some symptom relief (for hot flashes, etc) while not making me feel sick. However I'm supposed to take progesterone 14 days of the month and I still have trouble tolerating it. It makes me dizzy, weak, nauseous. Not only that, but often, my progesterone levels come back normal anyway. Despite that, doctors don't like women to take estrogen alone because there's a uterine cancer risk.
I'm sharing this here because I've had a normal (pretty amazing) sex life until February of this year when I developed genital numbness after about 10 days on a tiny dose of Prozac and right away, prior to reading about PSSD, I assumed that the reason I may have a more severe side effect than somebody else is because my hormones are abnormal/I take prescription hormones.
I also have a strange possible advantage (or disadvantage?) here. Because my body doesn't really create its own estrogen (at least not consistently), it's always kind of been up to me to dose myself. My doctors work with me, but the dose changes based on my symptoms basically. I've learned to read my body very well. The same goes for progesterone. I will take it when I feel I need it/can tolerate it. The other advantage I guess that I have is my hormones are constantly tested. I also would have access to testosterone if I wanted to try it -- but oddly, my testosterone levels recently, after years of being low, were on the higher end.
Recently during my Progesterone phase, the genital numbness got A LOT worse. I was due to stop my progesterone and did so 2 days ago, but there's not improvement yet.
What do you think? Does PSSD have an endocrine/hormonal component? I believe that it must. And I can tell you this - endocrinologists don't care about hormones. They care about diabetes. I have had a lifelong struggle trying to find endocrinologists who care about hormones, especially sex hormones. The testing is often inadequate and there are many cases where unconventional doctors put people on hormone replacement therapy, and the people really benefit (in a number of areas) despite their labwork being normal. I'm not saying rush to a doctor & try to get hormones, but I'm just saying that medicine isn't as far along as you'd think when it comes to hormones. There's still so much that's not known.
I have always believed that my anxiety is directly related to my hormones, which is why I was open to trying Prozac again because I got to a point where I felt like my hormones will never be regulated since my body doesn't produce them and I'm relying on subpar medication to help me - there's no doubt in my mind that all of it's connected in some way. At least for me. Ironically though, since my trial of Prozac, my anxiety and depression is much better. I made a lot of lifestyle changes that have made a big difference (decreasing stress, got out of a toxic relationship, meditation, etc.). Wish I never tried the stuff for a second time now.
Sorry that this got so long and drawn out. There wasn't really a short way to explain any of it.