MY POI Story

This part of my story has been awhile in the making. Growing up I did not know anything was wrong. I was a younger teenager (about 14/15) when I was at told I had low estrogen levels. I remember that day because I had to go see a specialist at Vanderbilt in the children’s hospital. I was on the same level but opposite side of the oncology ped’s patients and it broke my heart. They are over there fighting for their life’s about my age or younger.That was the moment I knew I wanted to go into the medical field ( which now I’m in nursing school hoping to go into critical care peds care). But back on the track on the story. So I was in the room with an awesome view of Naahville getting my blood drawn. I was like this is so pretty and I didn’t even think of the needle poking me. Well I few days later I got the results that I have low estrogen levels and need to be on birth control so I get hormones back in me and try to regulate my system. I was young, going through my teens not really understanding the whole problem just knowing I had to take birth control so I could get hormones in my system. My first birth control I was on was Yaz which at the time had problems happening so I switched from there and was not 100% consistent over the next few years with insurance and changing medicines. By the time I was becoming a senior in college I realized birth control was not working anymore. I talked to my ob and did more test. This include hormone blood work, and a pelvic ultrasound. The results of this showed I suffered from POI or Primary Ovarian Failure. This means “a loss of normal function of the ovaries before age 40”. I had really low estrogen levels and my ultrasound showed small ovaries. These all confirmed POI and then I was referred to Vandy to dig deeper and do some genetic testing. It was very interesting to talk to a genetic counselor and understand what was going on. So after some more blood work they found that I was born missing a part of my 13th chromosome which they said explains my low estrogen into POI. So fast forward now a few years , since then I have been on HRT (hormone replacement therapy). Being on HRT helps with my perimenopausal symptoms such as hot flashes, night sweats, and other symptoms. I will have to be on HRT till I reach menopause age. I face side effect on hormones and off but overall it’s better on HRT.

The reason I wanted to tell my story was because I did not want others to feel alone. When I was diagnosed I did not know anyone who understood how POI affected me for life. I was a teenager when I found out and having to deal with something that made me feel over 40. I had to understand and figure out how to take care of myself. I wanted to help and be there for others facing the same thing. Just earlier this year I found a charity out of the UK ” dedicated to providing information and support to women diagnosed  with Premature Ovarian Insufficiency, also known as Premature Menopause” (https://www.daisynetwork.org). I was so happy to find an organization to help those like me who face POI. So I took the next step and applied to become a Regional Coordinator for the US. Since the organization is bigger and based in the UK I wanted to help spread the help to the US so no others have to feel lost and lonely with their diagnose like me. So now I am a US Regional Coordinator for The Daisy Network and am so excited to start helping others. I have never really talked about my story and everything it includes and I am looking forward to feeling stronger enough to talk about it and be there for others.

My email for the Daisy Network is 👉 lindsey@daisynetwork.org.uk .

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