u/moody_mu

hi all. I posted a bit ago regarding my thoughts that I’ve had a prolactinoma since childhood

now my question is for women who also think they‘ve had this since at least puberty. this is kind of embarrassing for me, so please keep the respectful comments thank you!

but for those women, did any of you develop more tubular shaped breasts?

in addition to not getting my period til I was 16, and it being light or absent for the rest of my life, my breasts are more tubular and left a bit bigger than right. I always thought I was just unlucky in this way.. but now I’m wondering if a delayed and stunted puberty could have caused this

and, has anyone with this shape gotten a fuller breast or changes in shape on cab? I’m sure it’s too late but there is a flicker of hope..

Wondering how people have dealt with communicating issues related to prolactinoma to work.. esp fatigue, brain fog. Did you ever go through HR/formal routes, do docs even write notes regarding it? Or once on treatment does it make this generally irrelevant?

I am almost 38 F and recently diagnosed. Looking back, it seems like I could have had this since my teen years. Anyone know how common to start in teens? What are the symptoms? Also MRI showed Rathme cleft cyst.

I didn’t get my period til I was 16. And then it was immediately super light and irregular (up to 6 months between periods in late teens). around this time I also remember insane fatigue started. Have had chronic fatigue and light irregular periods ever since. Hot flashes in 20s.

Fatigue has been my main issue for a long time, and now that I know I have a prolactinoma, I’m wondering if this is the main culprit. My questions are:

- how many experience fatigue as a main symptom?

- how many have gotten improvement with medication?

- is there a know size of a prolactinoma, or lab value of prolactin, which is enough to cause fatigue?

- why don’t a lot of the main healthcare websites mention it as a symptom?

- how would you describe your fatigue? (mine is like sudden wave of it, feel like breathing is shallow, thinking is foggy, talking harder, feel like I could pass out - and it’s not a blood pressure issue)

- did you have insomnia (mine comes and goes)

Hello. I'm a 37 y/o F, recently found to have 4x5mm prolactinoma (and possible pars intermedia cyst), prolactin level 60.2 ng/ml.

I am wondering how likely it is I've had this since teenage years, because I've had absent/irregular/minimal periods ever since I started menstruating, as well as chronic fatigue and acne for about 2 decades. And looking back in my 20s, I think I was having hot flashes (flushed chest, face, red nose, increased fatigue). And I used to get frequent headaches behind my right eye, which have gotten better in the last few years. The MRI didn't show the prolactinoma compressing my optic nerve, but i'm wondering if it's size (or if the cyst size) can fluctuate? I've tried to get answers to my fatigue and acne for so long, (I was tested for narcolepsy even, b.c the fatigue hits like a wall). I am extremely hopeful things will change with one of the medications!