Can your PCOS be misdiagnosed?
YES! Some doctors are very quick to diagnose simply based off of the physical characteristics PCOS can show. Because of this they may miss major signs that should be pointing them in a different direction. One of the most common diseases mistaken for Polycystic Ovarian Syndrome is Cushings Disease. This is why it is immensely important to do your research and find a doctor who is exceptionally educated in PCOS. If you read all my post you will read me saying this over and over again. If you are diagnosed with PCOS yet actually have another endocrine disorder like Cushings, sadly none of the treatments you attempt will improve your symptoms. Cushings syndrome is caused by an over secretion of ACTH by the pituitary leading to an excess levels of cortisol. And unlike PCOS, this disease is curable! First the doctor would have to find the cause of the high cortisol levels and treat that, sometimes this means the removal of the pituitary tumor. These two endocrine disorders are often mistaken for each other because their symptoms mimic each other; this is why a diagnosis based off of a physical exam only can lead to further issues. The first set of blood work your doctor orders should help them decide if more testing is required in order to rule out any other endocrine disorders such as Cushings.
Being on some forms of birth control can also lead to someone being misdiagnosed. Birth control is made up of synthetic hormones like progestin and estrogen. While on birth control your menses is triggered by chemicals. This is called anovulatory bleeding. Remember that a period is defined as the shedding of the uterine lining only after ovulation has occurred and did not result in a pregnancy. The reason these synthetic hormones cause women to either remain undiagnosed or misdiagnosed is that these lab created hormones suppress any excess androgens levels. Since the androgen levels are forcefully suppressed a lot of the physical symptoms of PCOS may not appear while on Birth Control. Some lab results can also be affected while taking birth control. This is also why when someone comes off birth control after many years their symptoms seem to come out of nowhere quickly and are very dominant.
So what does this mean for me? Have I been misdiagnosed?
There is no way to give a simple answer on that. As I have stated in previous posts, it is particularly important to find a proper medical team, who is on your side and who is willing to complete all suggested testing prior to making a certain diagnosis. I am not saying if your doctor has yet to test your cortisol levels or complete all the lab work I provide my PCOS Healthy Lifestyle groups, that they are bad doctors. I am saying that this is another reason for the list as to why we all need to educate ourselves on our symptoms and become our own advocates. We need to be knowledgeable enough and fully prepared for our doctors’ visits to discuss diagnosis and treatment plans.