Primary ovarian insufficiency, or POI, affects
1 in 10,000 women by age 20
1 in 1000 by age 30
1 in 100 by age 40
While getting this diagnosis was not great news, at least it had a name. It was something I could read about, learn about, and try to better understand what was going on with me and why. I was so lucky to have a great roommate at NIH who had been diagnosed with POI a few years earlier. She was a comfort to me when I just needed to vent and a rock when I had questions. It wasn’t easy to hear the harsh truth, “kids are probably not possible.” I was 30 now and yes of course I wanted kids. I, like most girls, dreamed of a family, the white picket fence, and the perfect husband. Someday. I didn’t realize that my “someday” was now never going to come. How was this possible? I was so angry at the dozens of doctors who had misled me for the last 6 years. All they had to do was ask the right questions and order a simple blood test. How did they miss this? I blamed each and every one of them for my loss and what they had robbed me of. So while I began to spiral into an even greater depression, blaming everyone who had wronged me, I also had other major health issues to work through. Because I had gone so long without estrogen, I now had osteopenia. Everyone at NIH was amazing, and they literally helped me from head to toe. I had eye exams which reveled I had “dry eye syndrome.”
Dry eye syndrome is a little–known symptom of menopause. About 61 percent of premenopausal and menopausal women suffer from dry, itchy eyes—but only 16 percent of them realize menopause is to blame, according to the Society for Women’s Health Research. It’s time to change all that and start working our baby blues (and browns and greens…)!
“Many women going through menopause experience dry eye syndrome or exacerbation of their pre-existing symptoms,” says Dr. Sol Shaftel, M.D., Ph.D., an ophthalmologist and ophthalmic plastic and reconstructive surgery fellow at the University of Washington.
This diagnosis sent me reeling. I was so devastated, but I had hope that by enrolling as a participant in the study would lead to answers and help other women and girls escape similar fates. Several months into the study, I went into NIH to get my blood drawn, which was routine. I received a call the next day asking me to come back in and repeat the blood draw. They just wanted to double check a few things that looked off. They just wanted to be sure. I thought nothing of it and went back in. The next day, Dr. Nelson called me and I immediately thought something was terribly wrong. What could it possibly be? What now? “Are you sitting down? You’re not going to believe this. I’ve got some great news.” The reason my hormone levels needed to be double checked was because I was pregnant! I didn’t believe him. A part of me thought this is a mistake; they mixed my blood with another patient. How is this possible? I was so happy, but I was also scared to be happy. I was so scared that I didn’t tell anyone for a long time. Once I finally did tell, everyone was as shocked as I was but also so very happy for me. It was a beautiful gift I was given; it was a miracle. My son Aidan’s conception, and a few others in women in this study, spurred Dr. Nelson to study further the fertility potential in POI patients.
In research posted online last month by the journal Fertility and Sterility, Nelson and his coauthors compared the ovaries and hormone levels of 97 primary ovarian insufficiency patients and 47 women with normal periods. FSH elevation isn’t the main issue. Using ultrasound, the researchers were surprised to find that three-fourths of the POI patients had follicles—the fluid-filled sacs in the ovary that contain eggs and have the capability of producing ovarian hormones. Though while the patients’ pituitary glands were releasing plenty of follicle-stimulating hormone, or FSH, which causes follicles to grow, the glands also were releasing excessively high levels of luteinizing hormone or LH. LH normally surges once a month, signaling a follicle to break open and release an egg. Those constantly high LH levels in women with POI cause follicles to try to break open and release an egg too soon. “These women are getting the signal to ovulate all the time,” before their follicles are mature enough, Nelson says. The next step: See if estrogen therapy might suppress LH in POI patients and improve their ovulation rate, says Nelson, who’s ready to start such a study as soon as he finds a company that will provide the estrogen and a placebo.
So now what? I was given this amazing gift, and I certainly wasn’t going to take it for granted or squander the beauty of it. I had a beautiful pregnancy; I had never felt better or healthier. I didn’t experience any complications the entire pregnancy, other than his 15-inch head which was just too big to drop, so I had a C-section. I felt so unbelievably lucky and at the same time, a little guilty. There were so many other women and girls in the world that would not have this experience. I knew at that moment that I would do what I could to make that realization easier or help science find a way towards a cure so nobody would ever have to hear the words “children are most likely not possible for you.” I wanted to raise awareness and spread the word to increase research, so when Dr. Nelson asked me to tell my story to research students, I was honored. I did whatever I could to help, and Aidan and I would attend meetings and conferences at the NIH whenever possible. I also had the ability to spread the word on this rare disease via my talk show on SiriusXM. I would meet patients and interview them, as well as doctors and researchers, to hopefully reach that final goal of a cure. Through Dr. Nelson and my radio connections, I had the opportunity to meet a fellow patient, Nicole Witt. She is also in the protocol and has dedicated her life to helping others in the same situation with her two companies, The Adoptions Consultancy and Beyond Infertility. I am so impressed with how she overcame her situation and made it into a positive for herself and hundreds of others to come. I have interviewed Nicole many times, and I asked her for a quote for this book to help doctors, researchers, and patients alike.

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