Trigger warnings: Mentions of calories, trauma, medical gaslighting, and eating disorder.
My Journey with PCOS started before my first period. As soon as I started showing signs of puberty the weird hormones hit. I went from being underweight to “husky” clothing quickly. One school year the only clothes I fit were stretch pants and I could never get a pair of kids jeans that fit, then my school started a uniform policy and I could not find clothing in my size for in and out of school.
When I did start my period it was pretty awful, I bled heavily, was in severe pain, often causing me to leave school early from the pain, dizziness, nausea, and feeling faint. I was taken to a GYN by my mother for the severe pain and because my mother refused to allow me to try birth control I was told to track my cycle and take ibuprofen starting the day before my period was supposed to arrive.
My life went on like this until I got sick in college freshman year and found out I had a large ovarian cyst. I ended up being taken around to several specialists and being scheduled for a cyst removal over the summer between my sophomore and junior years of college. After the removal I lost some weight and was okay for about 4 months before all of my prior symptoms came back. I was then put on 14 days a month of progesterone with a break until the first of the following month in the hopes of improving things. It worked until just before graduate school when my doctor suddenly retired.
I saw a new doctor who started me on the mini pill where I bleed more days than I didn’t bleed and it never really worked well for my body. I went to a new doctor who scheduled me for an iud stating if the mini pill did not work that was all they could offer me. I had that for six years.
I had a few bumps in the road with it but it was generally better than my other experiences. The largest hiccup for me was seeing one doctor for pain during intimacy and being told I should be placed on double birth control due to my weight and then once I hit the age for menopause they would do a total hysterectomy. They did not take the time to even look at my chart to see I have migraines with aura and therefore cannot take the second medication they recommended, an estrogen pill. They also did not ask if I ever wanted to have children. All they saw was my weight from check in and they decided I was too fat to be an okay candidate for motherhood.
That experience was so jarring I did not go back to an obgyn for several years and did not do any follow up until I started having chronic bladder issues, it just so happens the specialist does urology and obgyn work so I started getting my yearly exams again.
Over the last year I started a new journey, attempting weight loss in the hopes that when I am ready, my husband and I can hopefully have a child, or if we cannot I would qualify for IVF. Right now I have lost 30 pounds from two medications my endocrinologist has me on. I’m probably the sickest I have been, but I am down thirty pounds from my start weight. My doctor would like me to lose another 77 pounds before I qualify for something as simple as oral fertility medications or IUI. I don’t know if the universe will ever let me be a mother a child that is biologically mine, but this is not the end of my journey to motherhood.
Every generation on my mother’s side from my grandmother down to me has struggled with PCOS and fertility. I will not be the last to struggle from this disease, but the medical community really needs to work on their thoughts about PCOS. If the condition causes weight gain and trouble with losing weight, the suggested treatment should not be a weightloss of 100 or more pounds before someone can get their symptoms taken seriously, or their desire for motherhood considered. Forced sterilization is not the option that should be presented if someone wants to have a biological child. An institutionally supported eating disorder also isn’t the answer, I have been told to eat 1000 calories a day or less since the last time I was able to lose weight without medication was when I ate 700 calories a day because I was not handling my trauma well.
We just need to do better.