Periodic Uterine Tantrum
Blood Issues: This or a picture of my insides. Your choice.

Written by Natalie Luhrs

I'm a lifelong geek with a passion for books and social justice.
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June 1, 2016

Blood Issues

Blood Issues

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.

Bloody Relief

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.)

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24 Comments

  1. Gail

    I had massive fibroids, and waited way too long to finally work up the nerve to address it with a doctor. Having a hysterectomy was honestly one of the best things I’ve ever done. I feel so much better, my life is so much easier, and I’m finally no longer anemic.

  2. Olivia Waite

    Holy crap, last year I had mild but noticeable vertigo and tinnitus so I went to the doctor. Also tend toward anemia. Also diagnosed with BPPD by a specialist, which is crap because he did the head test and nothing happened and he said “well it’s just not happening right now.” This was a man who broke eye contact IN THE MIDDLE OF OUR ‘NICE TO MEET YOU HANDSHAKE’ and completely declined to hear anything I said. I’m a nurse’s daughter with a history of ear problems: I’d done my research and knew roughly what I wanted checked out.

    The vertigo went away as soon as we moved out of our mold-infested apartment. Imagine that. The tinnitus is still here.

    • Natalie Luhrs

      The ENT I saw said that my hearing was within normal parameters and that the tinnitus was probably age related. At that point, I had been diagnosed with anemia and was on iron supplements and the vertigo was gone–it took less than 12 hours for it to be noticeably improved.

      When I got the dx of BPPD, my doctor did not even do the head test. My doctor also had a history of forgetting why I was taking medications but she wanted me in every three months anyhow (and never coded any of the visits as preventative so I had to pay the full cost of the visit out of pocket).

    • Olivia Waite

      Oh, that sucks — the ENT did a pressure test on me along with the hearing test, and when they tested my left ear I felt the world noticeably shift left and then back, like a terrible movie effect. I told them, “Hey, that was a big thing just now and you should look into it,” and they just shrugged. But hey, at least I can tell you when storms are coming because of barometric pressure shifts. It’s not as neat a party trick as you’d think.

    • Natalie Luhrs

      Yeah, I bet it’s not. The way my wrist sometimes hurts when there’s a storm coming.

  3. Ros

    @Olivia Waite: I can do that too, with my teeth. That’s no fun either.

  4. Becki

    Wow. I have been having a lot of these symptoms and it didn’t even occur to me that anything was out of the ordinary until I read your post. Thank you. I do know that I am anemic – I’m going to go do a better job of taking my supplements starting right now.

  5. angharad

    I can’t take the pill because it causes me to have a period every other week. I told this to a GP once and he said ‘yes, sometimes you get breakthrough bleeding on the pill’. I just gaped at him. Fortunately I had gone to see him about shoulder pain, not gynecological issues (the tendency of doctors to turn any conversation into ‘so why aren’t you on the pill’ is one of my pet bugbears).

    My story is very similar in some ways – I assumed for years that rushing off to the bathroom every hour was normal, and it was only after a number of years of chronic iron deficiency (and becoming very ill and run down) that I realised it was not. For women who can’t take the pill there’s a drug called cyclokaprone (or tranexamic acid) that may be useful for heavy bleeding.

    I

  6. trishb

    Natalie, thanks for sharing this. I hear you on the high deductible plans. My out of pocket is 6,850. On April 28, I found a small lump in my breast and saw my primary care on the 29th. On Monday, May 2, I went for a diagnostic mammogram and ultrasound. May 3 was a core needle biopsy. At this point I was still trying to convince myself that it was only a cyst. On the May 5, the results came back positive for invasive ductal carcinoma, stage 1a, grade 3 – translation no visible lymph node involvement, poorly differentiated cells. Somehow poorly differentiated equals very visible white spot in radiology land.

    I was given an appointment for May 9 with my surgeon who will head the multidisciplinary team for my treatment. My tumor was estrogen AND progesterone negative, with further testing still out on HER2 receptors. We decided that surgery and chemo could wait until the beginning of June. This was important to me as an IT consultant, as my 5 year contract would end on May 31 and I really wanted to tie up all the loose ends for the best client anyone could ever have. No such luck, tumor came back negative for HER2 receptivity, classing this as triple negative, which can be quite aggressive.

    So here came the echocardiogram on May 16, surgery for chemo port insertion May 17, genetic screening on the morning of May 18, followed by my first chemo treatment, and a follow up immune boosting shot on the 19th. Busy fucking week!

    Things have calmed down for a bit. Last week was an off week from treatments, and my second treatment was yesterday and this afternoon I head back for the shot, which can’t be given until at least 24 hours have passed from the end of the last chemo session.

    Here I am, less than a full month out from diagnosis, and not all the bills from the weeks of the 16th are in to the insurance company, yet I have already hit my out of pocket for the year! That immunoboost shot? $18,000!!!! And I get that after every treatment. For now that is every 2 weeks, but then it will be after weekly treatments for 3 months. This Neulasta really does sound like a medical wonder that can force your bone marrow to produce more healthy blood cells, but 18K x 20 treatments? Wow.

    If anyone in the SW OH area is ever dealing with this, I can highly recommend the Mary Jo Cropper Breast Center at Bethesda North. I am between there and the Kenwood Infusion Center and every single doctor, nurse, assistant, clerk, anything has gone out of their way for any little thing that will help me right now.

    Natalie, sorry I didn’t mean to hi-jack your post. Starting out just whining about crazy OOP insurance plans, and the high dose steroid pre-meds for chemo took me elsewhere. Feel free to moderate into oblivion.

    P.S. It does sound like you have your medical issues under better control, so very, very glad to hear that! But despite with everything else, do not let them tell you can’t be in perimenopause yet. My last period was at 46, and I am now 49. My sister was 46 or 47 also when she was done. Can’t remember if you are into your 40s yet.

    • Natalie Luhrs

      Trish, I’m so sorry you’re having to deal with this and I’ll hope for the best possible outcome for you. I’m in my early 40s now, when I raised the concern with my doctor I was in my late 30s. And since my mother died in her late 40s, I don’t have family history to track against, either.

      The high deductible plans are completely ridiculous–they moved us to one this year and my plan was to build up my HSA balance over the next couple of years to be able to cover deductible and out of pocket expenses. HAHAHAHAHAHAHAHAHA nope. The only good thing about this plan is that I don’t need referrals for specialists, so I can be more pro-active about investigating things–I have a list of things for my new primary care doctor to check on and I have an appointment with an endocrinologist in September to check for PCOS and insulin resistance. I’m also very lucky in that I have a flexible work schedule and I don’t have to make up time or use vacation time for doctor appointments.

      I have believed for many years that health insurance companies and hospitals shouldn’t be for-profit entities: the fact that they are making money off of people’s pain strikes me as evil. I fully support paying people for work, but when a company’s first duty is to their shareholders, priorities get fucked up.

  7. Fiberaddict

    My daughter (not quite 19, on the spectrum) was having horrible periods – at one point she bled for 8 weeks. Our GP shrugged and told her she could try the pill…..and I went *Ballistic*. The GP blinked and got her an appointment with an actual Gyn….and actually Looked at the labs.

    She’s now on a high-dosage bc pill, and under the care if an endocrinologist for a whacky thyroid. I’m glad OSHA can’t ban me from the room – she can’t advocate for herself. (Have to run to the Endo now, in fact!)

  8. QuilterPhyl

    I’m pretty convinced my sister’s (eventually fatal) uterine cancer was because her doctors spent decades blaming her painful, heavy bleeding on her weight. I will shout to any woman who will listen–find a doctor who will listen! They are out there. Be persistent. Heavy, painful bleeding is NEVER normal. Fire the doctor who tells you so.

    I’m glad, Natalie, that you are well. Bless you for writing about it.

    • Natalie Luhrs

      QuilterPhyl, in my case, my weight probably is a contributing factor–fat cells apparently produce estrogen which is what lead to buildup of tissue in my uterus. However, simply because something is co-morbid with another condition doesn’t mean that one should not get appropriate medical treatment. I’m so sorry that your sister’s doctors wouldn’t listen to her and that it ultimately proved fatal. I have been, I will admit, fairly lackadaisical about my health for much of my life, for various reasons. This seems to have lit a fire under me to make some changes in how I treat my body and my willingness to advocate for myself.

  9. QuilterPhyl

    Thanks, Natalie. And yes, weight can be, and most probably was for my sister, a contributing factor. But it’s no reason to ignore a serious condition. I hope others will see that and speak up. I’m glad you are doing that.

    • Natalie Luhrs

      Weight is absolutely NO REASON to refuse someone healthcare. Many fat people suffer and die needlessly because doctors refuse to treat them until they lose some weight instead of meeting people where they are. I have so much rage about this. So much.

  10. LunarG

    @Natalie Luhrs: Natalie and QuilterPhyl, I agree with you both completely and would like to add that if one has polycystic ovarian syndrome (PCOS), one’s entire insulin/estrogen relationship is completely jacked up, frequently causing obesity and vastly complicating attempts to lose weight? Symptoms of PCOS can include irregular periods, abnormally heavy periods, abnormally painful periods, breakthrough bleeding… A whole cavalcade of very familiar symptoms.

    • Natalie Luhrs

      LunarG: And that’s why I have an appointment scheduled with an endocrinologist in September. Because I’m pretty sure I’ve got something going on in that area–my fasting blood sugar tends to be on the high end of normal and my A1C last summer came back in the pre-diabetic range and my PCP told me to reduce how much sugar I eat and switch to whole grains (which I did–I managed to quit soda completely and now it tastes weird and wrong). And then never mentioned it again. Didn’t even ask me if I’d made the dietary changes.

  11. DameB

    I am so sorry. That’s rage-making, unjust, and dangerous and I’m glad you got the care you needed.

    (I hear you on the vaginal wand thing. I had one of those during my miscarriage. The tech was gentle and competent but… well, I felt like I’d just had sex with a stranger.)

  12. I_Sell_Books

    I don’t understand why it was never recommended you not see a Gynecologist in the first place.

    I hear you on the pain – for years I took up to 18 ibuprofen in the first 48 hours. Birth control helped, somewhat, but it was a waste as I turned out infertile anyway. Nonetheless, with the help of Science! I was able to have my one and only, and the most amazing thing happened after – I have very little period pain. I have been, in fact, surprised from time to time. Never ever in a million years did I think that would happen. And I’m so grateful for it.

    I know women for whom their periods are…’deeply unpleasant’ is a misnomer. Most of them have had endometriosis, which for the record, cannot be discovered through getting wanded – you must have exploratory surgery!!. Too many people, including many doctors and gynos, have no idea that that is the case3 – surgery is the only way to find it. Please, if you are in massive amounts of pain with severe bleeding and clotting and the rest, please find a OB/GYN who will take a look. Please also remember that endo does not necessarily only feel painful in the pelvis – adhesions can take place anywhere in the gut and chest as well.

    • Natalie Luhrs

      I think at one point–before I ever said anything about the weirdness–my PCP may have recommended a gyn to me. But she was doing my then-annual (ish) Pap smears and pelvic exams and never came out and said, “I really think you should go to a specialist for this.” So I thought everything was fine. Because I trusted my doctor. And I was in a weird place in my head around healthcare, too.

      Endometriosis is horrible. A cousin had it and it was debilitating for her. My recent reading tells me that you can get stray tissue IN YOUR BRAIN sometimes. WHAT THE FUCK, BODIES?

  13. I_Sell_Books

    Sorry for the spelling/html fail – I’m at work and keep getting interrupted. 😉

  14. I_Sell_Books

    Natalie –

    Please do not allow your endocrinologist to look at previous bloodwork and decide that your thyroid is “fine”. This recently happened to me and her conclusions based on the bloodwork, amongst other things (why yes, race does factor in to doctor visits, why do you ask?), pretty much ended with me deciding to see another doctor.

    PCOS: I have it. I have the classic string-o’-pearl ovaries – they were plain to see during my multiple wandings for IVF. However, I also have low insulin resistance, yet I am a headless fatty just like you see on the news (and I’m coming to crisis the woooooooooooooorrrrld!). I am not hairy and have missed maybe two periods in over 30 years. But also infertile… In the UK I am not considered to have PCOS, while in the US, or at least at my state teaching hospital, I do have PCOS. TL;DR – getting diagnosed as having PCOS can bv riddled with problems and prejudices. I wish you luck.

    • Natalie Luhrs

      My ovaries seem to be fine, but I have other symptoms–including the facial hair. This endo was recced by a friend and is supposedly pretty good. I’m going to ask her to rerun as many tests as she feels necessary, as I have fired my former PCP and do not trust any of her dx. I’m also a headless death fatty, but I’m also white and well educated, so I have some privilege to leverage there. Even though I shouldn’t have to think about it like that, you know?

  15. Roseann

    I call BS on your not being old enough for perimenopause. I just turned 40, and I’ve been experiencing symptoms for at least 2 years previous. My PCP and my Endo both agree that I am in perimenopause. My mother started going through hers right after I was born (she had me when she was 36), and hers didn’t take too long to complete. I’ve removed my BCP from my medical regimen and have started some supplements. I’ve been wondering lately if more of my medical crap isn’t caused by Perimenopause. I’m betting a majority are.

    So yeah, you could very well be “of a certain age” now. (I hate that phrase and I had a young doctor say that to me one day and I nearly throttled him. I said that everyone is of a certain age. The age they currently are.

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