Hi Diane

I’m new to these boards, but have been living with simple virilizing CAH for 29 years.  I’ve never been diagnosed with fibrocystic breast disease, but my OB/GYN told me quite some time ago that performing my own monthly BSE was important because my breasts are quite cystic (lumpy and bumpy is a better way to describe it, I think!) and I’d be more likely to notice a change if I kept up on my monthly exams.   I’ve also wondered if other women with CAH experience this same issue...

Mine are definitely worse at different times of the month (in terms of being exceptionally swollen/painful, lumpy and achy), based on where I am in my cycle.  I dread coming off the BCP in the near future when we’re ready to start trying for our first pregnancy - not only because I fear the worst in terms of erratic cycles but also because I don’t want to deal with the worsening breast discomfort due to my hormones raging all over the place!

I’m wondering if FBD has anything to do with the fact that our hormone levels are more "jumpy" than the general population, and in some cases the changes in breast tissue are yet another manifestation of the condition?

Wishing you the best!  Keep us posted.

christine