Loud and Clear: My Hormone Replacement Therapy Journey | Turner Syndrome Foundation

Loud and Clear: My Hormone Replacement Therapy Journey

blog series with Katie Steedly curling

Written by Katie Steedly Curling, PhD, writer, and guest blogger for the Turner Syndrome Foundation. Katie writes monthly about her experiences living with Turner Syndrome. In this article, she discusses her experience with Hormone Replacement Therapy.

Hormones are your body’s chemical messengers. They travel in your bloodstream to tissues or organs to help them do their work. They work slowly, over time, and affect many different processes, including: growth and development, metabolism – how your body gets energy from the food you eat, sexual function, reproduction, and mood.

– Journal of Clinical Endocrinology and Metabolism

My Diagnosis

I was diagnosed with Turner syndrome in the 9th grade in 1987. (The year matters because it situates me within the science of the time.) I had had an extremely painful period and my concerned parents took me to a doctor; a gynecologist suggested by my family’s general practitioner. She examined me and sent me to an endocrinologist who, after sending my blood to labs in the far corners of the United States, determined I had Turner syndrome. That was the first time I heard about Hormone Replacement Therapy (HRT). After my diagnosis, I was sent to a “high risk” gynecologist to investigate my ovaries via a laparoscopic procedure to figure out exactly what was happening in my body. This entire process occurred over the period of a year.

Treatment

My HRT journey started once I was diagnosed and has never stopped. My doctors have always referred to my treatment as Hormone Replacement Therapy, rather than Estrogen Replacement Therapy. I have never had injections or been on birth control pills per se. I have used various types of patches, a ring, and estrogen and progesterone pills. The only side effects I have experienced are weight gain and sporadic bleeding. How long will I remain on HRT? That will be determined by how my body continues to respond to treatment.

My prescription list, which indicates HRT, always leads to a discussion of Turner syndrome with medical professionals across a variety of office settings. I used to hear, although not so much anymore, “Why is someone at your age on Premarin and Provera.” I would have to explain to them why a 15 year-old young woman was taking medication generally prescribed to post-menopausal women. It has also signaled having a “preexisting condition” to health insurance providers. Indeed, TS is perhaps the ultimate “preexisting condition,” because it started before I was born and treatment will end when I die. I am almost 49 years old, and that means I have been living with the ups and downs of HRT a long time. 

A Positive Story

But despite all of those challenges, this is a positive story. Looking back, and I suspect my doctors understood this at the time, I was experiencing hormone-related symptoms beginning around the age of 15. I experienced painful periods, headaches, hot flashes, night sweats, mood swings, etc (I know I am not the only one to know what I am talking about here.) I have experienced all those things to a greater or lesser degree most of my life. Given that, the positive story remains. HRT has improved the quality of my life. Also, the connection between HRT, heart and bone health, and breast cancer continues to be studied. In some cases, the standards of care have shifted and changed over the years. Science has evolved and I have continued to follow my doctors’ HRT advice. The science behind HRT is a positive story, too.

Recent Years

Recent years have been particularly difficult as I navigate my body’s aging terrain. HRT continues to help. Symptoms still come and go, but they are closely managed. Figuring out the right medications and dosages is an ongoing journey that requires continual vigilance and communication with my Turner syndrome specialist/endocrinologist. Today, I don’t break out in random sweats. Today, I don’t bleed sporadically and profusely. Today, my highs and lows are not quite as high and low. Let me stress, HRT is an individual decision that has been positive for me.  

Chemical Messengers

I have learned over the years that hormones are our bodies chemical messengers. That makes sense to me. I understand – having lived through randomly sweating, cramps that feel like I am being stabbed in the abdomen, bleeding to the extent I feel weak, headaches that feel like a sledge hammer hitting my skull would be more gentle – the messages that flow throughout our bodies are important. When my hormones are in check, which happens by monitoring and adjusting my HRT, my body’s messages are loud and clear.   

You can read more about Hormone Replacement Therapy in individuals who have Turner Syndrome here.

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