I feel like I’m being misdiagnosed with PCOS
Like the title says I feel like I’m in the process of being misdiagnosed and I’m looking for some help and advice or even to hear if it’s even possible for me to have PCOS with my symptoms or lack there of
A bit about me I’m 21 and have always had extremely regular but very bad periods. Lots of cramping sometimes debilitating and very very heavy. I’ve gone unconscious before due to the pain and often end up bed bound or with cold/flu like symptoms during my period. I also have issues with my vision and memory during especially bad periods
Recently (past year or so) I’ve started experiencing some very bad cramps throughout the month, as bad as on my period, I’ve almost been in multiple car accidents due to the suddenness and severity of them but luckily was able to pull over in time (I’ve since moved to a city with public transportation for college so I’m not posing a safety risk to others) when these non period cramps come I sometimes throw up, get dizzy, and have trouble with my vision. These cramps and accompanying symptoms were very infrequent at first (maybe twice in a few months) but have since become an almost daily occurrence.
A new symptom I’ve been experiencing to go along with these cramps is very light bleeding that will go away quickly after (spotting?) that has also been getting worse and has become an odd brownish discharge along with small blood clots. Definitely not a period or the start of my period because I always get my period on time after
Other symptoms of note have included, severe cramping when attempting to do anything sexual or even masturbate and significant bleeding the one time my ex partner attempted to penetrate me with two fingers. We stopped immediately but the blood continued for a few days and then I got my period on schedule that month.
I originally saw a gyno for these issues and she did a physical exam and ordered a trans-vaginal ultrasound and a host of bloodwork for thyroid, hormones and insulin. This ultrasound revealed nothing concerning about my ovaries but a growth/abnormality in my endometrium. The doctor said there was nothing in my ovaries to indicate PCOS but ordered a followup ultrasound for three months from then. All of the hormonal bloodwork showed up fine, no high testosterone which seems to be part of PCOS from my understanding. I did show up for insulin resistance - this made the doctor think possible PCOS again
Three months from the original ultrasound I went and had both a normal and trans-vaginal ultrasound. During the normal ultrasound they were unable to find my uterus at all, it was revealed to have been tilting in the wrong direction. The trans-vaginal ultrasound again revealed no abnormalities to either ovary and the growth on my endometrium was no longer showing up.
I was sent to an endocrinologist who I finally saw after a long wait time of several months. She confirmed again no abnormalities on the ovaries indicating PCOS but because of the insulin resistance she decided that it most likely was which also seems to be my gynos decision.
My confusion is this, how can I have PCOS if I have no ovarian abnormalities, no hormonal abnormalities and none of the physical signs that seem to go along with it? I have no facial hair, arm hair, stomach hair, even my leg hair is quite sparse and I can go long times in between shaving. I’ve only had to pluck my eyebrows about 4 times in my life so I definitely don’t have any excess facial hair. The only thing I do have is insulin resistance. I know obviously something is very wrong but are any of the other symptoms I’ve mentioned part of PCOS? The bleeding, weird cramps etc? It seems to me like all of this goes a lot better with endometriosis but my doctors haven’t even mentioned that?
I’m just feeling very lost and confused
Just to add some other medical history, I’m anemic, diagnosed with POTS, RA, EDS, vertigo and celiac disease incase any of those are relevant