First Post: PCOS Diagnosis Process; Searching For Answers

Can anyone tell me what your experience of being diagnosed with PCOS was like? Did you recognize symptoms and ask your doctor? Are there any tests I should request or specific questions I should ask? I have my first OBGYN appointment on Wednesday as a new patient, and I am not sure what to expect.

Sorry for the long story... this is my first post, and I never really talk to anyone about this besides my fiancé (who is very supportive but as a man cannot relate). My family has always been very private when it comes to medical problems, and raised me to kind of just "get over it" if I was sick, so I have felt a little alone, judged, and conflicted throughout all of this.

I am 31 years old. I went on the pill at age 20. I have been without a period for over two years now while both on and off birth control (stopped taking it one year ago). I've had a laundry list of symptoms that my primary care physician assumed were gastrointestinal related but no conclusive diagnosis after being put through the ringer by a GI specialist.

My PCP had me get a pap/annual at his office (family doctor) before all of this began (almost three years ago now when I first began going to him) so he could continue my birth control prescription, and this was the last time I had this done. Periods were normal up to this point. Six months later in December of 2015 they stopped. Every time I have brought it up since he has chalked it up to my weight fluctuation, and has never done any testing or referred me to an OBGYN. I feel stupid for not seeking out one on my own, but I was overwhelmed with all of this and not thinking clearly.

In addition to the GI procedures (colonoscopy, endoscopy, ultrasounds), I believe my PCP has done bloodwork to test for any thyroid, liver, pancreas, and gall bladder issues, but the only thing I can ever remember coming back that was concerning with those tests was my blood sugar being elevated. The GI revealed some minor things but nothing that lead to a real answer. I go through periods of time where I feel absolutely fine, and then other times I can't get out of bed.

Up until I started seeing my PCP in 2015, I never had insurance. I ended up at urgent care or the ER depending on the severity of my problem/pain, and got all of my women's health screenings for birth control at either Planned Parenthood or the health center at my college.

Last year I began to feel defeated and a little crazy. The staff at my PCP had made inappropriate comments about my weight fluctuation, and I just felt like I was doing something wrong. I decided to stop taking the stomach medication, and nothing really changed. Then I wanted to see if my period would start back up if I stopped taking my birth control... it has been a year, and it hasn't come back. My fiancé and I are not using any method of birth control. Because of the pain, we do not have sex as much as we used to, but after a year of unprotected sex, nothing... although sometimes my stomach bloats to the point where I think I am pregnant.

I lost my job two years ago because I missed so much work due to this "mystery illness". Since then I was able to go back to school and successfully graduate, but now I am ready to get a job again... I just fear starting a career without having any answers, and worry about risking the same thing happening again.

The most consistent symptoms are my period being non-existent and my hair falling out. Some that come and go are the pain, bloating, swelling, changes in urinary habits, migraines, weight fluctuation... things that lead me to believe it could possibly be PCOS or something to do with my hormones and reproductive health.

If you've made it to this point, thank you for letting me vent. ❤ I appreciate you reading this, and if you have any advice, opinions, or could be willing to share your journey with me I would love to hear it.