The emotional impact of premature ovarian failure

It’s almost time to break out the celebratory raw herring! Why? Because we are officially less than one week away from the arrival of our egg donor, Marie, in Holland. After so much intense preparation, I still can’t believe it’s finally actually happening. And while the odds are that it won’t work, I’m going to try to do my best to stay cautiously optimistic during this next IVF cycle.

With that said, the cycle hasn’t quite started yet, and I’m currently in a plane somewhere over Greenland, which always makes me emotional (the being-in-a-plane part, not Greenland…that would be weird). I understand this is actually a common phenomenon — perhaps because our tiny monkey brains still can’t process the modern miracle that is air travel. I already (somewhat embarrassingly) found myself nearly in tears while watching Blockers, a movie which is decidedly NOT a tear-jerker. So perhaps it’s a good time to talk about something that’s been on my mind a lot lately: What is the emotional impact of a premature ovarian failure diagnosis?

Maybe it’s hard to understand if it hasn’t happened to you, or if you don’t want kids, but finding out suddenly that you will likely never have biological children is pretty rough. However, I hadn’t considered that it might be even more serious than that until I was researching premature ovarian failure (POF) for a recent post exploring what causes it. One of the first places I looked, Wikipedia, had this to say about emotional health in those who had been diagnosed:

The most common words women use to describe how they felt in the 2 hours after being given the diagnosis of primary ovarian insufficiency are “devastated, “shocked,” and “confused.”[8] These are words that describe emotional trauma. The diagnosis is more than infertility and affects a woman’s physical and emotional well-being.[1] Patients face the acute shock of the diagnosis, associated stigma of infertility, grief from the death of dreams, anxiety and depression from the disruption of life plans, confusion around the cause, symptoms of estrogen deficiency, worry over the associated potential medical sequelae such as reduced bone density and cardiovascular risk, and the uncertain future that all of these factors create.

I knew most of this already from personal experience, of course, but I was struck by the phrase `emotional trauma’. As in, damage to the psyche that occurs as a result of a severely distressing event, and which can even lead to post traumatic stress disorder. I was further struck by the mention of the words “shocked” and “devastated”. Those words sounded familiar… I went back to the first post I had written, where I described receiving my diagnosis, and I used both of those words to describe it. It made sense actually — it was a trauma. Come to think of it, it was definitely in my top-five, and probably even top-three. For some reason, just knowing this has helped me to feel less like a victim, and more like a survivor.

How to get through it

I could talk more about the other physical and emotional consequences of the diagnosis listed in the Wikipedia article — and I’m sure I will at some point — but in the meantime, what else has helped me, personally, to get through it?

One thing that has helped me tremendously, of course, has been Marie’s offer to donate. Going through something like this can be an extremely isolating experience, especially with the constant bombardment of pregnancy announcements and baby picts that compose 90% of my social media. Knowing that someone is willing to go through all this for us is huge, and I’ll be forever grateful even if it doesn’t work.

I realize, of course, that not everyone has a big-hearted (& big-footed) Marie in their lives, so I also wanted to emphasize a few things that my fellow POF-sufferers can do for themselves:

  1. “Come out”. Sharing what you’re going through with friends — and maybe even more generally — can provide you with a crucial support system. If nothing else, it will stop relatives from asking you when you’re having children.
  2. Take care of yourself. The term `self-care’ is usually a bit touchy-feely for me, but it’s actually important in this case. Personally, I recently turned down a request to give 10 hours of lectures at a summer school (which I would also need to prepare from scratch). Another colleague made me feel guilty about this at first, which was particularly confusing because they know what I’m going through. But you know what? They can ask someone who ISN’T coping with an emotional trauma while also undergoing their 4th IVF cycle.
  3. Give yourself credit. Acknowledge that what you’re going through is hard, and make sure to give yourself proper credit. Couples split up and people quit their jobs over this stuff. If you’re at least making it through the day, you’re freaking killing it.

7 thoughts on “The emotional impact of premature ovarian failure

  1. I’ve been excited about your hoped for pregnancy with Marie’s eggs, but this post makes me cry. I burst into tears over Marie’s big feet- go figure! My husband and I had trouble getting pregnant too. We both had surgery to correct reproductive problems. Every period brought tears knowing that we weren’t pregnant again. Our problems weren’t as serious as yours but I understand a little bit of your disappoint- just a little. There are lots of good vibes being sent by lots of people for a viable pregnancy and healthy mom and baby 10 months from now. Keep posting. Your blog is a wonderful support for others going through this and for all of us hoping for a baby. XO

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  2. Thank you for this! I’m coming up on the one year anniversary of my diagnosis, which happens to fall near my birthday, and I’m re-experiencing this trauma. It’s been a rough year. The diagnosis was odd for me. I had suspected it 5 years previously when I first became symptomatic. I had an older friend with POI and I was in medical school at the time so I specifically asked about the diagnosis, however I was told it was “just stress.” In addition to shock and devastation, the diagnosis came with a boatload of guilt for not having pushed harder for answers earlier. I’m single and though a few folks know, I haven’t “come out” about the diagnosis and that certainly adds more stress as I try to balance treatments and my presumably (previously) simple single life. I think it’s really, really hard for people who haven’t gone through this to understand.

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    1. I understand — I also think I would have been diagnosed earlier if I hadn’t been moving from country to country for my job. I imagine it’s even more isolating if you’re single, so my heart goes out to you. And yes, I think it’s almost impossible to understand if you haven’t gone through it, which is part of the reason I wanted to start this blog. Thanks so much for reading!

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  3. I’m not sure if I’m still entirely over my diagnosis. I notice over the past two years changes in my bodies, a sign my hormones are indeed falling. I don’t get the warm fuzzies I used to when I watched rom-coms or saw a very handsome man. I don’t feel the drive to mate that I had in my early twenties.

    These changes bother me. I wish I’d appreciated them when they were there. Getting giddy over a boy is something I’ll never feel again.

    And even worse, I’m not sure if there is one good enough egg left in there to give me a child. I can only hope.

    You’re very lucky to have a Marie in your life. Best wishes on success.

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    1. Agreed — I haven’t even touched on all the fun menopausal symptoms, which are apparently even stronger in those of us with POF (because the POF alone isn’t fun enough already!…) Best of luck to you as well. I don’t know how advanced your POF is, but I really hope you find that last good egg.

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