It’s funny: I’ve discussed everything from infertility grief to the intimate details of my uterine lining on this blog, and yet today’s topic — menopause — somehow feels like an even more taboo thing to discuss. Maybe it’s because — unlike an infertility journey — there’s no hope of a baby at the end.* And yet, in my case at least, the two journeys are inextricably connected.
Some readers may recall that the reason we used donor eggs to conceive our Miracle Baby (MB) was my premature ovarian failure (POF) diagnosis, which is sort of (but not exactly) like premature menopause. Effectively, this means that your ovaries stop releasing eggs, and your estrogen and progesterone levels plummet. In fact, when I was first diagnosed five years ago, I remember the gynecologist telling me that my hormone levels were that of a woman ‘twenty years older’, and that she was ‘shocked’ to see my results (I always did pride myself on making a strong impression…)
What you may not know is that infertility is only one side effect of POF. However, there are a number of other side effects, including ‘classical’ menopause symptoms like hot flashes, trouble sleeping, weight gain, and brain fog, but also more serious complications like increased risk of depression/anxiety, osteoporosis, heart disease, and neurodegenerative diseases like Alzheimer’s. Basically, your body is no longer making enough estrogen, and when this happens so unexpectedly early in life, this can have far-reaching consequences beyond just a lack of working ovaries. (Isn’t being a female just such a joy sometimes!)
These possible side effects of POF have been in the back of my mind since I was first diagnosed, but we were (understandably) more focused on addressing the whole having-children aspect. Once we managed that, I was under the impression that the fact that I’m still breastfeeding would somehow delay the onset of symptoms. However, recently I had the realization that I’m actually experiencing quite a few potentially related symptoms (including anxiety, hot flashes, and trouble sleeping), and from my subsequent googling, I learned that it is indeed possible to experience POF-related symptoms even while still breastfeeding.
With this all in mind, I scheduled a visit to the gynecologist a couple months ago. I specifically wanted to discuss 1) my current POF symptoms, 2) how concerned I should be about the more serious long-term consequences, and 3) whether I could start on hormone replacement therapy, particularly since I’m still breastfeeding, but also with an eye on possibly trying another embryo transfer in the not-so-distant future (more on that in a later post).
A retracted diagnosis
I’d somehow forgotten that the gynecologist was in the same department as our first IVF clinic, which probably should have raised some alarm bells. Instead, I sat in the waiting room for my turn, still convinced it’d be a quick and easy appointment.
It started badly right off the bat when the gynecologist who was seeing me didn’t seem to have any prior knowledge of my medical history despite being the same department that diagnosed me with POF already five years ago. Instead, the first thing she said was that they couldn’t necessarily diagnose me as having POF since I was still having occasional periods, and that hormone therapy was reserved for women who actually had POF and thus really needed it…
I sat there, dumbfounded. What exactly would they call my condition, then? Did they not have my old hormone levels in front of them?
I clarified my medical history, but then she decided to turn the conversation to the fact that I don’t use birth control. She warned me that I ‘still had a 5% chance’ of getting pregnant naturally as if I wouldn’t be THRILLED if that actually occurred. Now I was starting to get annoyed. I knew the statistic she was quoting was an average for *all* cases of POF, but I also had copious evidence that my case was more advanced (meaning an even lower chance). I was beginning to wish I’d brought my husband along for moral support.
Then she did an ultrasound (not seeming to understand it was approximately my 15-millionth) and was surprised when she couldn’t find my ovaries due to a lack of any follicles. (Was I surprised? Of course not.) This was about the point that I started crying, which she seemed to think was because this was all fresh news to me. I kid you not.
In reality, I was crying out of frustration. I had hormone issues severe enough to unequivocably fail out of own-egg (OE)IVF — and which were now causing a host of other symptoms — but which were apparently not ‘severe enough’ to warrant hormone therapy or even a definitive diagnosis? More importantly, by questioning my diagnosis, she had managed to invalidate in 5 minutes everything I went through the last ~8 years, which was really, REALLY hard.
Flash forward to two weeks later, when the gynecologist called for our follow-up telephone appointment. She sounded somber. My ears immediately perked up.
”I have the results of your recent bloodwork”, she said apologetically. She had the tone of someone attempting to delicately deliver bad news. “Unfortunately, it seems that your hormone levels are not consistent with a woman who is in menopause. They’re actually that of a woman who has already completed menopause.” She sounded somewhat in disbelief. “Your FSH is through the roof and your AMH is undetectable.” That’s right — I took her POF numbers and knocked them out of the park. She clearly expected me to be surprised. I was not.**
She said my POF was “unmistakable” and that I should start on hormone replacement therapy right away. I felt vindicated! She then referred me to an endocrinologist for a bone density scan to assess whether I already had significant bone density loss. (At that point, I still felt vindicated, though somewhat less triumphant than before…)
The good news is that the hormone replacement therapy she prescribed is safe to take while breastfeeding, and I can simply stop whenever we want to try another embryo transfer. The better news is that I’ve already noticed a significant decrease in my anxiety and hot flashes. (The not-as-good news is that the medication itself has some unpleasant side effects, but more on that in a later post.)
So in the end, I was right: I should be on hormone replacement therapy. Given all of the potential side effects of POF, I still can’t believe that some doctor along the line didn’t suggest this treatment for me earlier, but at least I’ve stumbled my way there now. And if there’s any lesson in all of this for those in similar shoes, it’s to always advocate for yourself.
* Or maybe it’s because menopause is just so unpleasant. When you type ‘Why is menopause…’ into google, the first three suggestions are ‘Why is menopause so difficult?’, ‘Why is menopause bad?’, and (my personal favorite) ‘Why is menopause making me fat?’
** I’ve always been an overachiever, so I guess my POF is no different.