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Infertility Awareness Week: My Diagnosis of Adenomyosis

Photo by Polina Zimmerman

Even before the contagion of Covid-19, this year has been pretty shitty for me. It started off with me having to make unexpected (read expensive) home repairs, then having medical issues, then those medical issues not being clear, then having to wait for testing, finally getting testing then receiving the results – Googling myself crazy – and having to wait months for an appointment with a specialist. Then the world was shut down due to the novel Coronavirus. Oh yeah, in the midst of all that I went through a tough breakup. 2020 has kicked my ass, but I’m not giving up the good fight.

In February, I was diagnosed with Adenomyosis. Have you heard of it? I hadn’t either. Neither had my primary care provider. It is often described it as the evil sister of endometriosis…if endometriosis needed an evil sister. So, through testing and imaging (ultrasound and MRI) I was diagnosed with it, then referred out to another doctor. I won’t get into the gory details that led to me being diagnosed, you don’t want that drama.

Adenomyosis by definition is a condition in which the inner lining of the uterus breaks through the muscle wall of the uterus. Adenomyosis can be a contributing factor to miscarriages and pre-term labor. It can have detrimental effects on IVF treatments.

This condition is currently wreaking havoc on my body and my emotional well-being. Without even knowing it (prior to diagnosis), I had already exhausted most of the viable treatment options available to me. Hormonal birth control, taking pain medicine every day, a slurry of experimental treatments (that have a horrid track record), waiting until I go through menopause, or a hysterectomy. Yikes.

After the ultrasound, they said that I could possibly have cancerous lesions and that I definitely had a fibroid or two. I was then sent for an MRI. I’m claustrophobic. This should be a screening question before an MRI. I nearly lost my shit. The MRI gave the diagnosis of adenomyosis. From the medical studies I’ve read, the only real diagnosis can come after the uterus has been removed and studied. There is not a lot of medical knowledge on this condition. Yikes times two.

I’m 36. I have one kid. I’ve never been married. The question then became “do I want more children?” Well, I hadn’t planned on having any more. I also had not planned on NOT having any more. But none of my life has gone the way I “planned” it. What I do know is that I’m constantly in pain and I have issues with bleeding. I am not a fan of taking pain medicine – it hardly works for me anyway. I had to come to terms with not being able to conceive and carry any more babies. I’m mostly okay with this decision…the decision to have the hysterectomy.

It was a tough decision to make. Although it will hopefully end my reproductive system misery, there is a profound sadness that surrounds this choice. I feel as though I’m giving up a large part of my femininity. Letting go of one of the biggest parts of my womanhood. It’s depressing.

Add son of a gun. I couldn’t even meet with the doctor. She called me and we talked it out. She told me I can still change my mind, but she’s not sure of how to further help me otherwise. I have a pre-operation appointment scheduled, but it will likely be pushed back.

I have never knowingly had any issues with fertility (aside from being told I won't know until I try at age 25), but what I have learned is that this could have very well been going on for a while. It could have very well contributed to my daughter having a lower birth weight. I’ll probably never have an answer to that.

This week is Infertility Awareness Week, so I wanted to share part of my story. So many people struggle with infertility (men and women). Most of us are ignorant until it directly affects us. This isn’t the path I would have chosen for myself, but I will do what is best for me and my family.

I implore you to send good thoughts, prayers, and positive vibes to anyone you know that suffers from the various conditions that contribute to infertility…this week and beyond.



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