I’ll start with saying it’s been hard. When I was about twelve my cycles started becoming irregular and I was having insanely intense cramps. Then the facial hair started growing.. Having a hispanic mother my family just assumed that was the cause of the growth, and we started using wax and Nair to control it. This didn’t explain my irregularities so my Nannie took me to the doctor.
The day I got my diagnosis:
The day I was told I would probably never have children. At twelve years old I was told I would never have children, and I was okay with that for years. I was put on birth control to regulate my cycles and that was that. After many different pills over the years that triggered my clinical depression, I decided to try the Depo Provera shot at sixteen years old. Within 3 months of being on the shot I gained 30lbs, I was at peak physical fitness and very active on the Varsity Drill team. While on the shot my hair also started falling out, so I decided to go back to the pill after about a year even though it wasn’t good for my mental health.
My life after the diagnosis
Then when I was nineteen, I started having more problems. I tried almost every single birth control option there is and none of them were helping with my symptoms. My doctor suggested the Mirena IUD, even though I have never had children. It was great for the first 2 years, then I started having intense cramps. I would be driving down the road and have to pull over because I was in so much pain.
In November of 2018 I decided to get it removed a 3 years early as suggested by my new Gynecologist at the time. My pain was blamed on my Mirena, so I agreed to get it taken out and once again be put on birth control pills. With Mirena most people don’t have a cycle, so for 2 years I did not have a cycle at all, even with the pill. In January of 2019 my husband, Jared, and I decided that I would get off of birth control. With being told for years that I would not have children, it was a mutual decision to give my body a break from the birth control. At this point I’d been on birth control for 10 years.
The last year of my life:
Since November of 2018 by cycles have been either nonexistent or prolonged. This means they can last for very long times, the longest so far lasting four months with no breaks. In this time I have seen three different Gynecologist. I have went to THREE different doctors saying SOMETHING IS WRONG only to get told it’s just your PCOS lose weight and take the pill. That’s it.
Women with PCOS get told it’s their fault, “if you just get the weight off you will feel better.” In 2018 I lost 35lbs with the help of Phentermine, and my symptoms were only getting worse. I was active, going to the gym daily, changed my diet and didn’t lose any weight without the help of weight loss medication. With PCOS most women have Insulin resistance, this makes it nearly impossible to lose weight.
In the January/February of 2020 I had my first cyst rupture. I had never felt this kind of pain before, I was at work trying to help the teacher I work under with an assignment we were doing and I had a heating pad over my stomach. Out of no where I felt this pain that I can only describe as being stabbed multiple times over. I ran out of the room to an empty room and laid on the floor, curled into a ball in tears.
After laying there for a while, I pulled myself up and immediately called my doctor. This was a Monday, and they would not see me until Friday. When I went into my appointment I was told “you either had a cyst rupture or a miscarriage. If YOU want me to order an ultrasound I will.” very nonchalantly. I requested the US and left, I wasn’t called for an appointment for a week, and they scheduled it two weeks out.
My appointment was scheduled THREE WEEKS after my incident, and it was going to cost $700 because the OBGYN did not perform sonograms in office, something I’ve never heard of. Then I heard about Dr. Brown, and decided to go out on a limb and try another doctor so I set an appointment for March. Going into that appointment I immediately felt a sense of comfort.
The appointment was taking a while and he peaked in personally and wanted to apologize for the wait and explained he had an in clinic emergency and would be in as soon as he could. I respected that the doctor himself did this, not an MA or Nurse. The doctor came in and sat down and listened, I told him what I was going through and how I felt. He immediately started ordering test, and giving me options. He not once pushed birth control or even brought up my weight, he made me feel important.
I finally felt heard. Two weeks later his office called and said my Testosterone levels were outrageously high and told me to take Metformin and come back in 30 days. Something WAS wrong, and he found the targeted hormone causing me trouble.
I have not went to my follow up, due to it being scheduled during the Pandemic but I plan on scheduling as soon as all of this is over. I am glad I am finally heard.
Please reach out if you’re struggling with this, I want to help you any way I can. You are NOT alone.
xoxo, your favorite CYSTER.