My PCOS Journey

PCOS, or polycystic ovarian syndrome, is a very common condition among women today. Chances are, if you don’t have it, you know someone that does. And you probably know that getting a diagnosis isn’t always easy, which means delayed treatment. So, I would like to share my journey with you. 

    I have had irregular periods since I was 16. At about 20 I still hadn’t gotten pregnant. My husband and I always said that we weren’t trying to get pregnant, but we weren’t trying not to. If it happened, it happened. We already had a son but we did want another child. After years of not conceiving, my ob/gyn decided it was time for some in-depth blood work. All of that came back “normal” even though my testosterone was higher than what the testing said normal range was. I don’t remember the exact numbers, but I remember thinking it was too high to be normal. So I asked them about it and got the usual responses of things like “sometimes it’s just high. It depends on the day.” “Hormones fluctuate.” Since this did not explain my irregular periods they wanted to do an ultrasound of my ovaries and uterus. My uterus was normal, but in my ovaries they could see too many follicles. Follicles are the small sacs that the eggs sit in to mature until they get released for ovulation. Even though this was not “normal” they didn’t have much concern. They proceeded with a three hour glucose test to see if I had undiagnosed diabetes. I did not. That was the end of their diagnosis. 

    We moved states and I found a new ob/gyn. Shared my history with him, my desire to get pregnant, and his plan of treatment was clomid to make me ovulate and progesterone to make me have a regular period. Within a few months I was finally pregnant with my daughter. No further diagnosis or investigation happened. Everything focused on my pregnancy. 

    When my daughter was 9 months old, we moved back home. Still having irregular periods, I decided to see an endocrinologist. She ran all the tests and said everything was textbook perfect. Left with no explanation as to why my hormones are obviously not regular, I went back to a regular ob/gyn. He said that as long as I did not go more than 4 months without a period, I was medically okay. I could take birth control if I wanted and that would make me have a regular period. I didn’t want birth control. I felt like that was a band-aid more than a solution. He ordered blood work after considering a PCOS diagnosis, but because I was once again “normal” he let that go.

    A year later I was diagnosed with fibromyalgia. Hormone levels and fluctuations can cause fibro flares. For me this is decreased energy, more pain, headaches/migraines, insomnia, and lack of appetite. Coupled with period discomfort is just terrible some months. When I miss a month or two, my period symptoms are worse when it finally comes. Which also causes a fibro flare. 

    My body will have the hormone drop to make me have a period, which causes the typical symptoms of breast tenderness and cramps, but I don’t always actually have a period until weeks later. This makes the flare last for weeks. As any woman knows, it is hard to function like that, especially with a family. 

    Two years after the fibro diagnosis, my ob/gyn retired, and I had my first visit with a different physician in the office. I believe she is a nurse practitioner. I was in that phase of missing a period but having all the symptoms when I saw her. She was concerned and scheduled me for an ultrasound on my ovaries and uterus. At that appointment, again my uterus is fine. However, I still have too many follicles in my ovaries. The follicles are presenting as what is known as “string of pearl syndrome.” It looks like a string of pearls lining the edges of both ovaries. The physician reviewing the scan immediately asks if I have PCOS. I said no. He asked who told me that, because clearly I do. I went over the whole deal with him. He said usually it does take 2-3 markers to be diagnosed but my ovaries are textbook PCOS. 

    It has taken 13 years of irregular periods, tests, doctors, and infertility to get here. I have irregular periods, my hair constantly falls out, 7 years between my kids, fatigue, and higher than normal testosterone levels. I am not overweight and I do not have acne. The lack of those two things kept others from diagnosing me. 

    If you are having any sort of struggle medically, I want to encourage you to keep praying and keep asking questions. I know going to another appointment and having more tests gets old and it is inconvenient and can be expensive. But keep going. Do your research. Do not give up until you have answers. 

    If you have PCOS, you are not alone. The symptoms are not in your head.

With Hope in His Service,

Heather