Nothing to see here!

The year that hasn't gone quite according to plan

Tongue in cheek, I promise. Folk art from the American Art Museum in DC that always made me laugh but has become rather more relatable.

I have to confess I’ve been having a tough time of it lately. At the turning of the year, something turned inside me, too, and not for the better.

When I was in my teens and twenties, I often missed school or work for a day or two when my period struck. Somehow I always ended up crumpled on the floor, running fevers, sometimes blacking out. But over the past couple of years, my once-nightmarish periods calmed down, a reprieve I hadn’t expected. I even started to take it for granted.

But in January, I felt as though my insides were being torn out. Nothing touched the pain. My chest hurt and so did my kidneys and my back and my thighs. I couldn’t stand up straight. This time around, I didn’t lose just one or two days but a whole week. After the first four or five days of pain that left me curled sleeplessly around my heating pad, my nerves were shredded.

In February, it happened again. And in March. And in April. And in May. And in June. I learned to plan my life around that lost week: no travel, no immovable in-person commitments, no errands, no sleep. I worked a week ahead of schedule. I couldn’t think or write like that.

And then July and August buried themselves in pain.

I don’t remember when I drew the connection—plausible but impossible to prove—between the onset of such serious pain and the booster vaccine I’d gotten in late December, except that I wondered whether there was any relationship between the two back when the official line was that there was No Relationship. Bodies aren’t machines. All kinds of things can throw your cycle off. Maybe it’s just stress. We’re in a pandemic, after all!

But the corners of the Internet were full of women whose stories sounded an awful lot like mine: women long past menopause who started bleeding again. Women who bled for months. Women who bled so heavily they didn’t dare leave the house. Women who stopped bleeding altogether. And I kept finding that same unreal pain that can’t be tamed by words but which lurks between the lines:

I got the second shot of Pfizer in July. I have bled almost every single day since and have the most debilitating cramps all month long. I am missing work regularly. I also have the feeling like my bladder is being pressed on and am having to urinate up to six times in the night. I have lower abdomen bloating and severe pain in my hips and back. All of this started immediately after the second vaccine. Have others had urinary symptoms alongside the irregular bleeding? Has anyone found that the irregular bleeding symptoms resolve over time? My OGBYN is brushing this off, but after 120 days of bleeding near-constantly, I am extremely concerned.

I just finished what was hopefully the last day of a heinous and painful cycle. Every month since my vaccination I've been having hellish cycles. No one knows enough and they just tell me to cope. But it's been 5 months and it's scary... The pain is so bad that I had to l stay home from work. It felt like my whole entire body lower half was broken.

I am experiencing extremely painful periods following the second dose of the COVID vaccine. Vomiting, shaking, nausea, heavy, extreme clotting, fainting, debilitating cramps. I have been to the emergency room twice for this already due to pain and bleeding. I’ve had two ultrasounds (internal/external), bloodwork. Follow up appointments and nothing has come up. No cysts, fibroids, PCOS, nothing. They offer pain meds and those aren’t working for the pain. This has been an issue for the last 8 months. I’ve reported to Pfizer & CDC and have gotten no where. I’ve read so many other women having issues but there are “no supporting reports”. I know I am not alone with this. I am not against the vaccine-obviously since I received two doses. I am looking for anyone who has had something similar to please speak up and reach out/comment.

Heavy bleeding, heavy clotting, debilitating cramps, lasting about 10 days. Every month since has been the same. I lose so much blood that I get dizzy very easily… This situation has caused me great confusion and worry. I don’t talk about it to anyone in the fear that I will be labeled a conspiracy theorist. There are no answers at this point.

I wasn’t in a hurry to go to the doctor. I’d already spent enough of my life seeking help for my terrible menstrual pain and not finding any. I’d had enough of doctors telling me it was impossible that I could run strange fevers or prescribing birth control pills I couldn’t tolerate, then Vicodin, then throwing up their hands. Back then, doctors said it was almost certainly endometriosis but if I didn’t want surgery they couldn’t confirm it. Maybe a round of Lupron would help? But I read about the side effects online—so it’s extra-grim to see Lupron reemerge as a ‘puberty blocker’—and decided I’d prefer the pain. It wasn’t normal but there was nothing to do about it.

But in July, it all became too much. Something was seriously wrong and I could no longer pretend it would get better on its own. It was only getting worse. For days on end, I felt like I was being mauled alive.

The doctor said that a few months ago, she wouldn’t have drawn the connection herself. But by now she’s seen too many women like me. She thinks that my immune system’s response to the vaccine reactivated and aggravated endometriosis. But we’ll never know for sure. (It’s entirely possible that a COVID infection would have had the same consequences—another unknowable.) The goal is to put the monster back to sleep somehow and bring the pain under control. But for now, the perimeter of my life has contracted sharply—it’s been weeks since I wasn’t in constant pain—and my nights have grown longer and darker. I try not to speculate about what it means, especially when it comes to a big question mark like fertility, but it’s hard not to wonder if the future got smaller, too.

If pain is a message, what is it trying to say? Or is there no sense in it—just this terrible noise?

Which is all to say: It’s hard to accept.

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What’s also hard to accept is that—at every turn—women's concerns about this have been written off. It's not happening. OK, maybe it's happening but there’s no reason to think it’s related. OK, maybe it’s happening and it kind of seems like it might be related but it’s temporary and not serious. OK, maybe it's not temporary and maybe it’s kind of serious but it's not anywhere near as serious as vaccine hesitancy:

In sum, we know very little of the side effects of any vaccine, let alone the current vaccines available for COVID-19, on menstruating and post-menopausal women. Yet, we know for sure that these risks are far smaller than the risk of becoming severely ill from COVID-19 itself.

It’s a disclaimer as curious as it is ubiquitous. If the risks of catching COVID vary across factors like age, sex, and health status, and the benefits and risks of vaccination likewise vary, how can researchers claim that “we know for sure that these risks [potentially associated with vaccination] are far smaller than the risk of becoming severely ill from COVID-19 itself”—before they’ve conducted any research? And what if your risk of becoming severely ill from COVID-19 was low to begin with? Shouldn’t research start from the place that it’s at least possible that the trade-offs aren’t worth it for every demographic?

The bottom line as we see it: There is no evidence that the COVID-19 vaccine alters menstruation or menopause long-term. Whether COVID-19 vaccination is behind the reported cases of postmenopausal bleeding, or menstrual changes, remains to be investigated… As a whole, however, the take-home message is that although there may be potential side effects on menstruation and menopausal status as a result of the COVID-19 vaccine, these, like other vaccine side effects, appear to be temporary. It is therefore important to follow health guidelines and get vaccinated as soon as possible.

There’s no evidence the vaccine (or COVID-19 infection, for that matter, which may well have similar effects) alters menstruation or menopause long-term—but there is no ‘long-term’ to reference. It seems to me the evidence isn’t in, in either direction. Personally, I’d assumed that, as protection from the vaccine wore off, the effects on my cycle would, too. But eight months later, it’s worse than ever. What’s long-term?

'Bianchi says her team at NIH expedited its grant funding process for this research. “There was an urgency to it, the fact that this was getting so much attention. We were worried this was contributing to vaccine hesitancy in reproductive-age women."'

So, is attention and vaccine hesitancy the problem (therefore the research must find that effects on menstrual cycle are overblown) or is the problem that women are experiencing serious and in some cases life-altering changes to their menstrual cycles? Is such an inquiry—where researchers assume upfront that vaccine hesitancy is worse than whatever women may be experiencing—open to whatever it may unearth? Why isn’t there more concern that women are experiencing such disruptions to our cycles, which medicine usually recognizes as a key indicator of our overall health? Why must women’s experiences and concerns always be cut down to size before they’ve even been measured?* Why weren’t we looking for answers all along?

As someone in the life-altering changes category, let me say: Please, just do the research first, then decide what the bigger problem is.

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The logic is quite familiar at this point. We don't want to fuel vaccine hesitancy, therefore women can't be experiencing serious effects on their menstrual cycles.

Women:

We don't want people to panic, so we'll tell them the virus is under control and that the flu and xenophobia are bigger health risks.

Virus: Not under control.

We don't want the wrong people to protest the wrong things but we do want the right people to protest the right things, so we'll pretend the political content of protest affects the public health advisability of protesting in a pandemic.

Political content: Doesn't affect viral transmission.

This kind of virtuous manipulation shreds public trust. I worked in public health for several years before starting grad school. I know this mindset well. You think: You're the expert. The public don't have time to become public health experts. You have their best interests at heart. So the question becomes: what do people need to hear to do what you want them to do? It's easy to fall into a "wouldn't it be convenient if..." mentality. Then you forget that that was only a qualification, a clause you had no business cutting from the final draft.

But you forget that you don't know everything. You forget that where the 'narrative'—we talked about narratives all the time—diverges from the facts, people will notice because their very lives and experiences will fall into those gaps.

The only way through difficult situations is working with reality, rather than against it. Public health's convenient narratives and virtuous manipulation shred trust. These tactics also don't work because people with experiences you’ve ruled out as inconvenient will want to know what happened to them and why and what to do about it. And don’t forget that you made these people and their experiences inconvenient, by needing a messy reality to appear just so.

Logic models make everything look clean and orderly. You progress neatly from left to right, tackling your objectives as you go. But real life is something else, especially during a pandemic where so many variables are unknown. Unforeseen complications arise. Sometimes, efforts to help can harm. Don’t precook your conclusions for political convenience. Do the research first.

*Why does this sound so much like the the 1970 Senate hearings on safety concerns about birth-control pills, where critics accused Senator Nelson of “needlessly frighten[ing]” women? As Barbara Seaman observes in The Greatest Experiment Ever Run on Women:

“I never understood what they meant by that needlessly. Did they really think that all the studies were wrong, and that no blood clots or strokes were taking place in otherwise healthy young women? Or did they think women would be scared to death by negative information, even if it was accurate, and that it would be better to die from blood clots than from fright?

Needlessly frighten became a buzz phrase not only during the hearings but also afterward, separating those who valued fairness, evidence, informed consent, and/or women’s health rights from those who had other priorities… such as population control, pharmaceutical profits, or, if a doctor, maintaining the obedience and blind trust of patients.”