“Hidden”: that’s exactly how it feels… Other people can’t see it… I want to hide it myself…

Myriam (not her real name) who is 36 and lives in Southern France has recently been diagnosed with polyarthritis.

“Diagnosed is a big word; doctors don’t know if it is polyarthritis or not…, it affects my everyday life, my family life, my professional life, my relationships. I feel pain… Sometimes I can’t move my hands, arms or legs at all…

But it’s not this experience I’d like to share with you, there is something else, something that has been more dramatic for me. Something overwhelming… A nightmare… Paradoxically, it’s no deadly disease. I do not feel sick, feel pain or look sick…

I have DOR, which is diminished ovarian reserve, also referred to as pre-menopause. Wow: how to hear that when you are 36 and still want kids? I became pregnant with my daughter after 6 months trying (so fast, so easy). My daughter arrived like a dream, no… a revolution!

A year later, we try for another baby. 3 months, six months: nothing. Inside, I feel something is wrong but why worry? It was so easy the first time. Two years later I see my gynecologist. He confirms: why worry? It was easy first time. Time goes by… I write down cycles, ovulation, temperature, and dates of intercourse. I get obsessed with it, and depressed. I see a new doctor, and another, and another. After 3 years, I saw another gynecologist. Without examination, he listens and say: “pre-menopause.” Blood tests will later confirm the diagnosis.

A punch in the face. I drown. I cannot accept it. I start gathering information from the internet, I read medical literature… I get acupuncture, take supplements, even see a healer. I keep trying, I have hope. Time goes by… Nothing. I turn to egg donation but this is not possible in France. I could go elsewhere but this would be expensive. Not my eggs. Not my child. Too much for me…! I give up. The problem with DOR is that it’s irreversible: you’re born with an existing ovarian reserve and once they’ve gone…

And now my daughter is 4. She is so big, so kind, so smart. She goes to school. She learns to count and write and read. She makes friends. Everybody says she looks like me (this feels sooo good). I feel I’m a great mum. Apart from my husband, nobody knows and I’m not ready to share yet… I have so much sadness, despair and shame… I’m just beginning to accept it.

I wish that everyone knew that as young women we cannot imagine not being able to have a baby. I was not aware of the notion of an egg reserve. I’d heard about infertility due to age. More information should be made available to young women but also to doctors about this.

Honestly, I can’t identify any real positives about the experience. Maybe it’s changed my view on parenthood and on life in general. I make the most of my daughter.

It hurts me when people say: “it’s ok, you already have a child. You should feel blessed!” Or “it’s no big deal! You’re not sick.” Or when they ask when we’re having another baby?” (People often ask young married couples this question, but it’s a very private question… maybe you don’t want kids… maybe you can’t have kids… it is very hard…)”

More information about DOR can be found here:
http://www.columbiaobgyn.org/condition_treatments/diminished-ovarian-reserve#.WSVJYzGsU0E

 

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