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1 in 5000

unique

I share an office with radiologists at the hospital. I couldn’t help over hear a conversation about an MRI. What grabbed my attention was their lack of knowledge regarding gynaecological anatomy. The MRI showed a malformed uterus, a short vagina and two ovaries. Having MRKH myself, I was able to identify it quickly in my head. But I kept quiet. I witnessed a google search, trying to understand what that might be. Questions like is it a male or a female? Is it an intersex case? Is it an hermaphroditic case? The Google search quickly led to discussions about famous people who might be male or female.

Those who know me, are aware that I have MRKH, that I am female as proven by outer appearance, hormones, and genetic testing showing chromossomes 46 XX, surgery at 18 years old, confident in myself, living a happy, fulfilling life, public speaker in these matters of fertility. But I couldn’t help feel shaken by the conversation in the office. I kept thinking about the words they were choosing to write in that report, about how that girl’s life was going to change once she knows about it. I couldn’t help but wonder, how is she going to cope? Does she have a support system at home to deal with all the emotions and mourn the losses of such a diagnosis? My heart was beating faster and faster, like I was feeling the pain that that girl will soon feel, in a couple of days.

It is estimated that in 1983 in Portugal, 14 girls were born with MRKH. I was one of them. At a young age I had to deal with questions of identity, femininity, infertility. But I didn’t let this diagnosis define me. I defined it myself by choosing what it means to me: my uniqueness, my power, the one thing that makes me feel I can conquer everything I commit myself to achieve.

Understanding what a diagnosis of infertility feels like and having been on the medical field for over 12 years now, if there’s any advice I can give to the medical community, this is it:

  • The rarity of a diagnosis doesn’t justify your lack of awareness.
  • Be mindful of what the diagnosis might mean for the person who is receiving it.
  • Be empathic and choose your words carefully.
  • Be prepared to answer questions and offer solutions.
  • Refer to a coach or a psychologist who specialises in these matters.

Andreia Trigo

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