First things first: this story has a happy ending. It could have, so easily, gone the other way. I am lucky.
It started with vertigo.
No, back up. Three years ago? No. Eight years ago? No.
More like twenty nine years ago: March 1987.
Or: when I got my first period.
When people who menstruate talk about their cycles, they tend to do so in hushed voices and behind closed doors. We need to talk about this openly. Menstruation is a basic biological function. When I was growing up–things may be different now, but I doubt it–I learned about menstruation not in a health class but from a curriculum provided to my school by Kotex. The girls stayed in the classroom while the boys were taken to the gym–presumably for showing of the video about boners that we also got to watch. But I bet the boys didn’t get a pink pamphlet about that “time of the month” and how you might feel a little sick, but it’s normal and you should just push right through it. While wearing white pants and frolicking in a field of flowers on or a beach. No discussion at all about cramps, gastrointestinal issues, mood swings, or any of the other pain that often comes along with menstruation. Just exhortations that ultimately serve to minimize the potential impact of menstruation on your life and that make you feel like a freak when your experience isn’t like the one described in the pamphlet or video. Oh, and Judy Blume’s Are You There God? It’s Me, Margaret.
If you have painful periods, doctors will often recommend high doses of ibuprofen for those who can take NSAIDS and if you’re lucky, you might get a prescription for something stronger. But you probably won’t. Oh, and if you take too many different kinds of over the counter painkillers in a futile attempt to make the pain stop so you can concentrate, you may end up vomiting blood and going to the ER where you’ll be subjected to a humiliating exam and lecture by the (male) doctor on duty. The fact that you were in so much pain that you felt that you needed to take ibuprofen, acetaminophen, and aspirin over the course of about four hours will never come up. You will never tell another doctor about your extreme pain and when it subsides after you take birth control pills for a few years, you will be so grateful. And you will have learned your lesson–you only mention your difficult periods one other time to a doctor and when you do, she tells you it’s normal. And you believe her.
There is an appalling lack of research into menstrual disorders. Because this is something that mostly women have to deal with and because the medical establishment has been overwhelmingly dominated by men for centuries, it hasn’t been a priority. Menstrual pain interferes with our daily lives and can be a symptom of a more serious condition.
We must talk about it. Our very lives depend on it.
Note: descriptions of medical issues under the cut.
A Periodical History
From the very beginning, my periods were difficult. Even the first one.
Doubled over with cramps. Vomiting. Diarrhea. Backache. Headaches. Mood swings. Heavy bleeding.
And shame. Shame for bleeding so heavily that it was impossible to change my pads frequently enough (and an incongruence between their geometry and mine). Shame for having to go home from school early–and then feeling better later in the day. Shame around not being allowed to use tampons the week I was going to have my period with swim lessons. It was made extremely clear to me from my first period that this was not something that was talked about. It was shameful and to be hidden.
My freshman year of college, I went to the student health center about the pain. The doctor suggested I pre-load 800 mg of ibuprofen in the 2-3 days before my period started. I was regular, but not that regular so this rarely worked. I still got sick every month–and it was affecting my ability to concentrate on my school work or even to attend class during the worst of it.
In my early-to-mid-twenties, I went on birth control pills. It was a revelation. My periods were light, cramp-free, and manageable. I’d’ve stayed on them, except I was laid off and lost my health insurance and couldn’t afford to pay out of pocket. But the few years on birth control pills seemed to help everything regularize. My period was regular and my flow was predictable and I missed less work once I found another job.
Until it wasn’t regular anymore, about eight years ago. I started keeping track of my cycle length, first on a calendar and then in an app on my phone (gender neutral! not pink! not cutesy!). I went back on birth control pills–then stopped after a few months because they gave me terrible mood swings the like of which I’d never experienced before (and on the same pill I’d been taking previously). I continued to keep track. Then I noticed that my period duration and flow had changed.
Both before and after I’d been on birth control pills, my periods always lasted the same number of days and my heaviest days were always the same days each cycle.
Three years ago, my period duration became irregular and I developed mid-cycle spotting. My heaviest days became unpredictable and heavier than they’d ever been–so heavy that I had to use a pad with super-plus tampons on those days. I eventually invested in cloth pads because they were less irritating than disposables. Switching solely to pads was never an option for me and neither was a menstrual cup. I could bleed through a super-plus tampon in about an hour and a half to two hours when my flow was at its heaviest.
So I said something to my primary care doctor. I showed her the data and told her I was concerned that there was something wrong. She told me I was too young for perimenopause and that everything was normal. She did not refer me to a gynecologist. I didn’t think to go to one–why would I? My doctor said everything was normal.
So that’s the back story. Years of pain and difficulty. Intermittent relief. A doctor who told me that what I was experiencing was normal.
This Bloody Year
Late last December, I developed vertigo. I had a med check with my doctor in February and mentioned it. She looked in my ears and told me it was benign paroxysmal positional vertigo and that she’d give me some exercises (she didn’t, she gave me a fact sheet but no exercises). It didn’t get better. By March I’d developed tinnitus and the vertigo was getting worse. I ended up making another appointment and, at her suggestion, an appointment with an ENT.
The day before the appointment, I had extremely heavy mid-cycle spotting–I ended up texting a co-worker to bring me a tampon, that’s how heavy it was. There was no way I was making it back to my office and then back to the bathroom without bleeding through my clothing.
Thank God I had that spotting. And thank God I remembered to say something about it at my appointment.
The vertigo and tinnitus turned out to be caused by iron deficiency anemia and once I started on 975 mg of ferrous sulfate per day, they mostly went away. I’ve been diagnosed with iron deficiency anemia multiple times in my life, the earliest when I was five years old and the time before this past March was about three years ago–right around the time I expressed concern about my periods.
Because I remembered to say something about the extra-heavy spotting, I got a referral to a gynecologist and a lab slip for an ultrasound.
Let me tell you: I was totally against transvaginal ultrasounds being required for people to get abortions before I had one myself and now I am extra totally against them because they’re uncomfortable, invasive, and potentially traumatic. (They will tell you that the wand is about the diameter of a tampon. This is not untrue. But a tampon is not 10 inches long, made from hard plastic, and manipulated by someone who is not you.)
The ultrasound showed that my endometrium was thickened. The results were sent to the gynecologist to see if they wanted me to come in earlier. Boy howdy, did they. Within the week. And the week after that I had a hysteroscopy, an endometrial biopsy, and a Mirena IUD inserted. The progesterone in the Mirena would help to thin my endometrium out which would then hopefully make my periods lighter–it was thicker due to my body not producing enough progesterone to balance out the estrogen, basically.
I thought that would be the end of it. Then my biopsy results came back and I had something called “complex hyperplasia with atypia”–in short, pre-cancerous cells in my endometrium. There were three options: hope the Mirena continued to thin the endometrium and re-check in three months, a D&C, or a hysterectomy. Dr. P recommended a D&C.
After getting a second opinion, I scheduled a D&C for May 4. It’s an outpatient procedure and done under general anesthetic. It went well and I am so grateful that I was able to work from home while I was recovering. It may have been outpatient, but as was pointed out to me, it was still surgery. And I hurt afterwards.
In the three weeks leading up to the surgery after the Mirena was inserted, I’d had pretty constant bleeding from the progesterone causing the endometrium to shed. The day after the D&C, the bleeding completely stopped–and has essentially stayed stopped. And two days after the surgery, I got the best news possible: I no longer had complex hyperplasia with atypia. My cells had regressed to complex hyperplasia without atypia.
I had my post-op appointment with Dr. P last week. She’s confident that between the progesterone I’ve been taking since the surgery and the Mirena, that my cells will ultimately regress back to normal. I’m currently tapering off the progesterone as going on it made me rather emotionally volatile for about a week until I adjusted. I have to get biopsies every three months for the next year and assuming all goes well, then I’ll go to one every six months or a year). If my endometrial cells do not regress back to normal , then we will re-evaluate the hysterectomy option.
I am very much hoping that I get to keep my uterus but I also know that if I do have to have a hysterectomy, that I’ll be okay with that.
What I am not okay with is this: my primary care doctor blew off my concern three years ago when I first raised the issue. If she’d referred me to a gynecologist at that time instead of telling me that everything was normal then perhaps things would have been different. Or perhaps not–I’ll never know for sure. All I know is that when I told her that I was concerned and that my periods were no longer normal for me, she should have listened.
I’m getting a new primary care doctor and once my care is officially transferred (sometime in the next month), I’ll be writing a letter of complaint to the state medical board, as there were other ongoing issues with my care as well.
I don’t know why doctors don’t listen to people when they talk about menstrual pain and irregularity. What I’ve had to deal with my entire adult life, and especially over the last 8 years, is not normal. And if I hadn’t said something when I did–I am so lucky.
And what I’ve been dealing with is relatively mild on the spectrum of horrible things that can happen to uteruses and environs: no fibroids, no ovarian cysts, no endometriosis (that I know of), and once it became apparently something was wrong, I received prompt and appropriate treatment. I know people who have been strung along by their doctors for years, told that their pain and difficulty wasn’t really that bad, that they were exaggerating, that they should just be less anxious, that it’s in their head, and let’s check just one more thing before you can have your hysterectomy (there’s always one more thing) so on and so forth. But it was also the fear of being told those things that lead me to stay quiet about what I was dealing with for so long, too.
I repeat: I am one of the lucky ones.
More reading: Lena Dunham’s “The Sickest Girl”. I see reflections of myself in her experience. I know I am not alone. You’re not alone, either.
(We won’t talk about my stupid high deductible health insurance with an out of pocket maximum of $5,000 because that is a whole other thing I could write a post about.)