Since I had the hysterectomy/BSO in July 2013, I have definitely felt side effects of cognitive decline. I describe these as losing my train of thought, basic forgetfulness and confusion, lower attention span, and most problematic – word finding (I cannot remember a word when I need it, although it might come to me days later; I demonstrate this physically sometimes by grabbing at air, as if the word is hanging there and I just need to catch it).
In the last few months, I have felt like this decline has accelerated. It’s become embarrassing in social situations and even worse in professional situations (like the other day when I nearly sent an email in which I spelled the word “nutrition” as n-u-t-r-i-c-i-a-n, and I really had to stare at it for a few seconds trying to figure out if that was correct). These days I have to read every email I write at least five times before I send it, I am nervous about any meeting I attend because I don’t always fully understand what’s being discussed (mostly because I can’t pay attention the way I used to or I forget that something was already said five minutes earlier), and I worry that my students can tell that I’m not confident when I enter the classroom. When I talk to other women about this, they agree – after having undergone surgical menopause or having gone through natural menopause, they feel DUMBER (yes, I know that’s not a word, but it so aptly describes what I feel both by showing and telling). Despite this, all doctors I’ve spoken with repeat that there is no medical evidence to demonstrate that cognitive decline is an actual side effect of surgical menopause in women my age.
The largest study of cognition in women who have undergone menopause was one done in France over ten years ago. Women age 65 underwent several tests and it was determined that, yes ideedy – they did experience cognitive decline, and the earlier they started menopause, the worse this decline was after age 65. This report from May of this year looks at that study again to look specifically at dementia.
There are a few things about this newer report that I am disturbed by. One, of course, is confirmation that after 65, I will certainly experience cognitive decline, even if what I’m experiencing now is jut “all in my head” or is related to something else entirely (my PCP has reduced my dosage of Topamax, which I take for migraine prophylaxis; she feels this could help since among its main side effects are speech, language, and memory problems).
What I’m even more concerned by is that this study is old already, and it’s a study of women who for the most part went through menopause naturally – thus, they are 65 years old. There is virtually no data on cognitive side effects for women who go through surgical menopause, particularly at a young age:
in terms of surgical menopause, these results suggest that further caution should be used when recommending ovariectomy [oophorectomy] in younger women, and the potential long-term effects on cognitive function are a component of the risk/benefit ratio associated with such surgery
So we know the potential long-term effects, but what about short-term effects? This sort of study needs to be done as well. At a recent meeting of my local FORCE chapter, a gynecologist who specializes in middle-aged women and menopause management explained that women, especially those who are under the age of 40 (like me) who undergo surgical menopause are at much higher risk for bone problems and heart disease. There is research to demonstrate this, she said. But when I asked about cognitive side effects, she admitted that while she hears from many women who visit her that they feel they are experiencing cognitive decline, she explained that there really is no data to support that this is actually the case.
In fact, she went so far as to imply that this feeling I’m having is psychosomatic. Here was her analogy. Most women don’t remember the hundreds of times in their life that they get their period. But any woman remembers the time she got her period when she was at the beach and it nearly ruined her white swimsuit. After that, any time she’s at the beach, she’s slightly nervous about getting her period, even though she’d always had that risk before that one time it actually happened. So what this doctor was saying was that perhaps I was experiencing cognitive decline before I had the hysterectomy, and I am just associating it with the hysterectomy/BSO because that is when I started to really notice it.
Nope. Not buying it. I’m sorry if it sounds arrogant, but I am a pretty high functioning intellectual person. I am a big ditz when it comes to a lot of stuff – ask my husband; he probably has a blog about it hidden somewhere. But I have a PhD in the teaching of writing, which essentially means, I have a the highest degree you can obtain in THINKING and COMMUNICATING WHAT I THINK and teaching others how to do that, too. I do research, I read complex books and complicated articles, I present my work at conferences, I teach lots of students and grade papers, I run two programs at a large state university, one that requires me to train other faculty in how to teach writing and the other that requires me to be responsible for over 3000 students and their writing curriculum. I know when something’s amuck in my brain, when it’s time to take a break, when I need a chocolatey snack or a nap. And I know that I didn’t get DUMBER until after I had that surgery.
What bothers me the most about this is that the doctor said she hears this all the time! But there’s no data to prove it’s true, so therefore it must be in our heads? More hysterical women. Instead, how about collecting some data? How about taking some interviews from these women? How about replicating the French survey from ten years ago but doing it on a population of women who’ve undergone surgical menopause before the age of 40? There are many of us – not just BRCA positives, but lots of women who’ve had hysterectomy/BSOs for endometriosis and a slue of other reasons.
When I was making my choices about preventative surgeries, there was obviously a lot to weigh. My doctors told me what I might face once I underwent the removal of my ovaries – higher risk of heart disease, bone loss, night sweats, hot flashes, mood swings, hair loss, weight gain. I didn’t blink an eye at any of these knowing they’d be better than risking ovarian cancer.
But if someone told me I might become a blithering idiot who no longer felt like she could function with her colleagues and peers, could no longer do the work she’d spent over 30 years preparing for, her life’s calling, to teach — well, that definitely would’ve made me think twice, at least back then when I could think straight.