In our final post for PCOS Awareness Month, blogger Jamie shares her personal story of how she was diagnosed with PCOS and how her diagnosis finally made sense after years of symptoms.
When we married at 30 years old, I was healthy and in good shape, and always had been. I had never been pregnant nor had any inkling that my fertility would be less than perfect. At 31, my husband and I decided we were as ready as we’d ever be to parent, so we set aside the birth control and got down to business. Neither of us had any idea this might be challenging, but we wanted two kids before we were 35, so I looked up what I needed to know so we could be as effective as possible at our “baby dancing”. Infertility? Not me!
That was five years ago.
I “charted,” or tracked my cycles, for about two years. I had difficulty spotting the temperature shift that signaled ovulation, and my cycles were a little short, but I was menstruating regularly, so nothing seemed amiss. After one year, we started talking to our doctors about infertility, and both had certain tests done. At that point, we were diagnosed with low sperm morphology, creating mild, male factor infertility (MFI). But in my own head, there was the tiniest bit of relief – it wasn’t me!
Two years into trying we went through two Intra-Uterine Inseminations (IUIs). From the second IUI, we conceived, then miscarried at about 8 weeks. We then had a spontaneous pregnancy, which also miscarried around 8 weeks. More tests, and our doctors, which then included our General Practitioners, an OB-Gyn, a couple of Reproductive Endocrinologists (REs) and a specialty Urologist, still said MFI was our only diagnosis.
So, we changed to a new fertility clinic. At our initial consultation with the new RE, he brought up PCOS. “Do you have unusual facial hair?” I suppose so, especially for my relatively-fair ethnic background. “How about acne?” Actually, yes, more than I ever had as a teenager. “Are your menstrual cycles irregular, or – I see you’ve charted – did you have trouble pinpointing ovulation?” They’re just a little short, but, well, I just thought I wasn’t charting correctly. “Do you have a family history of diabetes?” Diabetes – absolutely, both of my grandmothers, and I had become overweight and developed pre-diabetes, both of which I couldn’t seem to shake.
That was the Doctor that finally diagnosed me with PCOS, three years and much heartbreak into our journey. That diagnosis, while troubling, was also a relief. It explained so much more, and gave us the kick in the pants to try IVF. Two years, two failed IVFs, and no pregnancies later, we are still childless. But we also gained more evidence that my PCOS was causing egg quality problems.
Thanks to the observation of eggs and fertilization that is possible through IVF with ICSI, a technique whereby individual sperm are injected into individual eggs, and genetic testing of embryos, we know that many of my eggs do not go through the final step of maturation, where they divide down from 46 to 23 chromosomes. We also know that the sperm are poor quality, and that even when we can fertilize an egg and conceive an embryo, it is unlikely to be genetically competent.
The more I thought about all this, the more it made sense. My grandmother who passed away at 63 from diabetes complications had diabetes from a relatively young age for her generation. She is the only one in my family who had trouble conceiving or carrying a child. My father was the only one who was born alive. Unfortunately, she passed away when I was almost 15, so I’ve never had the chance to ask her about it. But, I believe she had PCOS. A “string of pearls” is often used to describe how PCOS ovaries appear. Just like the actual string of pearls she passed on to me, she seems to have shared this with me as well. Now I have PCOS. That’s me.
Over our first five years of marriage, I put on about 30 pounds. I went from a healthy BMI of 23 to overweight at a BMI of 28. Since my PCOS diagnosis two years ago, I’ve been on Metformin, and our most recent RE provided me with a diet based on the insulin index, since PCOS is related to insulin resistance. Earlier this year, I followed it loosely and lost over 20 pounds in about five months. I’m now at a BMI of about 24, back in the healthy range. I wonder sometimes if I had to go through this to avoid my grandmother’s fate of an early death.
Despite the weight loss, and my new running hobby (not part of the weight loss, I started it after), I don’t feel like my body can go through another egg retrieval. Healing after the last one took longer than normal, and I find it too hard to justify gambling more money on my own eggs. Now at 36, my eggs are at increased risk for various genetic abnormalities, even without my additional egg quality problems. But I feel healthier and happier than I have in years. So, we have decided to try something the younger me never imagined – using donor eggs.
PCOS? Yes, that’s me.
About the Author
Jamie is a recovering attorney, social entrepreneur, freelance writer and stressed home executive. You can find her blogging about her take on life, love, her journey through infertility and pregnancy loss, and her quest for inner peace as The Womb Warrior at Wonky Wombs and Wacky Wickets.
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