I'm Not Embarrassed about my Periods Anymore
March is Endometriosis Awareness Month. A disease-riddled brain dump of experiences and details that might help.
Continuing on with my thinking on disease, disability, womanhood, and language.
This is kind of a collage piece but mostly bulleted lists of thoughts and facts.
I wrote this to help others get help so it leans into information over narrative.
Reminder of the obvious: I’m not a doctor. Not even close. I share what I know today in the hopes it can help but it isn’t a diagnosis or a medical plan. Science gets updated all the time. So I’m not liable etc etc etc.
:::
15 year old me would be horrified I went on tv to talk about my periods.
I started bleeding around 14 years old. Maybe earlier but it took a while for things to be consistent.
It always hurt. I can’t remember it not hurting. I lay in the floor of the downstairs bathroom, waiting for poop to move through me because I thought that was the reason it hurt so bad. I just waited and waited.
But also, it really seemed like it hurt everyone too.
I was embarrassed. I hated bleeding. I hated people knowing I was bleeding. I was convinced everyone could hear pads crunch as I walked. Convinced every time I carried a purse to the bathroom they knew. That when the friend’s dog stuck their nose in my crotch, everyone knew.
But I was embarrassed about most things related to my body. I hated going to the bathroom in public bathrooms because people could hear me pee or poop. I hated bras because my small size meant I was in trainers and you could see the bulky shape of the fabric I didn’t fill and the length adjusters on my shoulders. I couldn’t stand being in my pjs in public. Who would ever do that for fun?
My mom wanted to help with all of it. She told me everything well in advance. She wanted to help me learn about make up, choose pads, figure out tampons, pick bras. She wasn’t embarrassed. She was confident and proud.
I refused her help the way my toddler yells at me if I look at her too sympathetically. “Stop looking at me!” she cries. “Dad! Mom is looking at me! Stop!”
I didn’t want to be seen either.
I hated being in this form that kept morphing beneath my clothes when all I wanted was to read books, play frisbee, and memorize Bible verses for quiz team.
But I did need help.
Twenty years later, I have a diagnosis and way more of my mom’s spirit of Devil May Care. There is very little that could embarrass me about my bodily functions anymore.
Mostly because I don’t want someone else to suffer like I did. I would never let my kid suffer like I did, assuming the entire time it was normal. And in a way, it was in my house. Eve’s curse and all of that.
If I start counting the years of symptoms from when I started bleeding… it was twenty years from start to surgery.
What the fuck kept me from help all that time? I told doctors about it. I told friends different facts over the years.
A combination of misinformation I believed, dismissive providers, uneducated providers, and normalization of pain/restriction in women’s bodies.1
Periods should be inconveniences, not hindrances.
Hindsight is 20/20 as they say. But there are things that I wish I had known were beyond the line of healthy, no matter how many people in my life dealt with similar things.
I was afraid of when my period would start and how I would handle it amidst regular life.
I once cancelled plans to fly to a dance event across the country when I realized my period would happen during the event.
I changed plans when I was too tired or when I hurt too much.
I’ve brought a heating pad to meeting with realtors, professional appointments, staff meetings, etc.
I was up for a job and started fishing to find out if I would have disability accommodations for the worst day of my periods.
I felt scared to drive on the first day of my period. I was so tired and floppy. I had the worst brain fog (it really feels like a fog). I was limp. I couldn’t maintain basic coordination. I accidentally hurt myself a lot.
The clotting was so regular that it became familiar and normal. But wow red flag: I regularly had the impulse to take pictures of clotting because I wasn’t sure how big is too big. I never showed these pictures to an actual gynecologist.
Pain during sex that I attributed entirely as psychological issues due to strict adherence to Purity Culture as a young adult.
I saw minimal change in blood loss when on birth control. I tried six different brands and combinations over the years.
Bladder pain makes sense now. I thought I had recurring UTIs or yeast infections. Nope.
The bonkers gut flares I’d have. I didn’t think of these as related to endo; but I haven’t had a single one after surgery.
I also believed a lot about endometriosis that wasn’t true.
Basically, I read disease descriptions like insecure women read job descriptions—I don’t hit or exceed every single metric? Then this isn’t me.
My periods were consistent in their timing. I didn’t have any variation in when it happened. I assumed my periods would have to vary to have endo.
The pain was inconsistent. Not every period was hell. Not every period derailed my life.
The descriptions on websites about what signals a “heavy period” was so weird. “Two pads an hr.” Y’all, I never hit that metric. But I also changed my pads often?
It also describes unhealthy clotting as “bigger than a quarter”. What does this mean?! In circumference? In depth? And how I am supposed to measure this when I mostly ran to the toilet when I felt one coming? Or it was absorbed into my pad? I’ve had this question over a decade.
I genuinely believed it wasn’t “bad enough.” Endo actually has very VERY different presentation based on the person. Some people never have symptoms. So when I knew people with the disease who had multiple surgeries by their early 20s or were in the ER for pain management or blood loss… well, I was fine.
Slow development of the most severe symptoms over many years. It wasn’t all at once. Though being pregnant and not bleeding for a while was a revelation. I had so much energy!
Pain during periods was “manageable” with advil. Just… a lot of advil.
Dismissal from care providers. “It gets better after children.” “Just drink some alcohol before you have sex to relax.”
Education. It’s hard to know what is happening when the symptoms are murky. And I had no idea that endometriosis was as common as it is. And I don't hear nearly as much about adenomyosis.
Surgery. I felt I had to “qualify” in some way with an accumulation of symptoms, with a referral from a doc. In the end, I called the specialist myself and said “I want to see you.” Dr. Riley has told me since that people often come into her office thinking they have to go through several treatments or meet certain criteria of pain/etc before they can access surgery. Not with her they don’t!
I got pregnant when I wanted to. Endo caused infertility, yes? Actually, not exclusively. It is a cause in a major number of infertility patients. But that population is a large minority of endo cases out in the world.
I had a c section. Wouldn’t they have seen it during that? I know they looked at my ovaries because I knew when they placed them back inside (anesthesiologist bumped up meds at that point). I asked Dr. Riley about this. She said nope. It was mostly behind my uterus and my uterus would have taken up my whole abdomen at this point. I didn’t have large sections on my organs. Blood from the surgery would have hidden other parts of it. And they were busy. A lot is happening even in a non-emergency c section. Having your abdomen opened and no one saying “endo!” doesn’t mean it isn’t there.
Care first arrived outside of traditional medicine.
Friends gave me books that taught me what I needed to know about the biology of menstruation. Fifth Vital Sign. Taking Charge of your Fertility. Period Repair Manual. The Result: I could read my periods. I had an accurate idea of what did and did not work.
The first person to assert I must have endo was an integrative health doctor I met through dance. We were in different states so I couldn’t use insurance and she couldn’t order tests; but she consulted on my health through the pandemic.
My sister Jen who was bold enough to go through the surgery and get a diagnosis. Which led me to Dr. Riley.
A provider like Dr. Riley who took my pain AND my fears seriously. It built really significant trust.
Getting work around medical anxiety. Taking care of my mental health.
By the time I met with Dr. Riley, I’d been through several scary health things. There was real medical anxiety around what could happen to me during treatments that should have been straightforward. I was so scared of surgery and if it would hurt me further.
I was scared that nothing would be found. What was I supposed to do then?
Or even worse, how embarrassing that I’d made all this fuss and been “dramatic” (oh what a damning word to be called as a woman) when it was nothing at all.
That it would be so bad that I’d lose organs. Or maybe it would be cancer. Maybe it was the start of the end.
It would make it all worse.
I’d bleed out and die.
Woof.
Dr. Riley really helped me with all of these.
She said that she wouldn’t do anything in surgery that would change my recovery time in a significant way. So no organs going missing, etc. (Though I did give her permission to take my appendix… which ended up being too stuck to take)
She said they almost always find something. And always take tissue samples to run through the lab even if they don’t see traditional endo lesions.
That if they really didn’t find something, I still had her as my doctor. Her team supports pelvic pain of all kinds, not just endo. So I had resources even if endo wasn’t my root cause.
And that I shouldn’t feel embarrassed if it was nothing. Not having a disease is good! We aren’t embarrassed to finish a colonoscopy and not have colon cancer! All information is good information for treatment!
I felt like I was going to be okay with these perspectives.
The diagnosis and surgery really has me excited for the future. Excited for my future. Excited for the future treatment for all endo patients. I don’t think the coming generations will suffer like mine has.
The mental impact of the surgery was huge. Even though the long term symptom relief isn’t guaranteed, knowing that i have it changes everything for me.
I have a team that cares about me. And not just me as Dana but all endometriosis sufferers. Not just my disease but my goals for my own life, my preferences, finding what works for me.
Research and test development around biomarkers. I’m seeing things about noninvasive tests with menstruation blood.
Dreams of management that can be tailored to the person without a test and see approach. It's trial and error right now.
Public conversations around women’s pain. See: The Retrievals.
We need better standards of care for patients with ambiguous disease presentation.
aka we need better care for women*
because we’re the ones with ambiguous disease presentation.
The patient standards for their own care are changing. I don’t think patients are going to be as ready to accept an answer that isn’t an answer. We aren’t going to just let things slide.
The doctor will call us if they are worried, right?
We know this is a myth. Maybe this kind of set up never existed. Certainly can’t exist under insurance directed medicine.
We patients know what we want. And we don’t want vague answers, suggestions, or “management” of symptoms without nuance and rigor.
We want curiosity from our providers.
We want our narratives listened to. We want to be believed from our reports, not running experiments in our own lives.
We don’t need our doctors to be super nice or friendly. We just want them to believe us.
Insurance dictated healthcare has got to go. Doctors and patients need to be the ones making decisions about what is prescribed, what is treated, how it is treated.
People need to not avoid their PCP because a basic blood test sets them back hundreds of dollars because they can’t afford the health insurance that makes it accessible.
It’s too expensive to be chronically ill or disabled—but most of us already are or will be soon.
Medicine as a business first model has got to go. Buh bye administrative metrics for profit. Adios. Ciao.
We need education on how to spot endometriosis so more referrals given
More surgeons! More specialists!
More team models of care with consistent ethic and culture across appointments.
Stop the pink tax!
Creation of easy file transfer and information sharing between practices. Stop the feeling of starting over every time we look for a new provider. My generation moves way more than the one before me. We don’t have doctors who see us through our whole lives. We need continuity of information sharing.
Can you imagine a world where policy makers make these issues central to their platform and its not weird but celebrated for the basic human rights and dignity that it is?
Resources
Fifth Vital Sign. Cycles and reading cycles and how our periods tell us about our health.
Healing Endo. I had skepticism about title because Endo is chronic and not currently “healable”, but I do know that lifestyle changes can support management and the rest of the book seems really solid.
Period Repair Manual. A great first evaluation tool for what might be happening with you.
Power to the Pelvis. A handbook on pelvic exercises for pain. Super super great images to guide and essential information!
Ask Me About My Uterus by Abbie Norman. Published in 2018, this is already an “older” text because of the advances happening in surgery, diagnosis, and pain management. But the process she shares of fighting for her medical care is so compelling and familiar. Warning: this text would have been a “well I don’t have endo because I don’t have it this bad” if I had read it before I had been diagnosed lol.
Endo Tiktok. In the green room before tv, I brought up how helpful I think tiktok it. The surgeons did not agree. They see people come in with debilitating issues but start insisting that a “fact” they heard from an influencer is real and that their expertise hard-won over decades is irrelevant based on this “elixer” someone is selling. Fair. If you use tiktok less for the science and more for the sharing and support, for running things past folks, you can get so much out of it. I argued that the community, that people sharing their daily experiences, was super useful. And that the repeated message was to get specialist care, to not get surgery from a general obgyn but someone who focuses on excision.
Random Facts //Warnings // Things to Look For // Opinions
The only diagnosis for endometriosis is SURGERY. You can make a probable guess without it but it is not a diagnosis.
Ultrasounds are useful but not diagnostic. We need them to see if there are other issues causing pain, bleeding etc. We need them because they can indicate endo lesions or scar adhesions when the technician uses certain imaging techniques. They can make sure you aren’t walking into a scary mess when you go into surgery. But most people who have endo have completely clear ultrasounds.
Only work with surgeons who FOCUS ON Minimally Invasive Gynecological Surgeries (MIGS). Even better if most of what they do are surgeries for endometriosis. Laparascopy with robots is super cool too.
Only surgeons who do excision as primary modality and who can explain under what circumstances ablation is used.
I think a lot of “interventions” are better framed for patients as “supports”. How can we support your body doing the thing it needs to do?
Beware of an unexplained birth control prescription. Birth control is not treatment; it is symptom management. Nothing wrong with that if you know that is what you are doing. Symptom management can literally give someone’s life back to them. But getting a pill without a more in depth conversation about extent of pain and underlying causes is misdirection.
We think progesterine birth control can help reduce spread of endo because we know that endo is fed by estrogen. But it’s not a universally effective disease-spread-stiffler. [←very scientific terminology, of course lol]
In the opposite direction: beware of people who write off birth control entirely. It can be really helpful. The pill isn’t the issue, it’s the PCP tendency to prescribe it without further medical investigation.
“Natural solutions” are not “solutions” anymore than birth control is. But it can really help. Example: going off dairy and gluten really did help my GI issues that were endo based—didn’t eliminate it entirely but it did reduce my episodes a lot. Some people swear by seed cycling. I like acupuncture but it didn’t really help my hormones given the extent of the disease.
It can be worth going off BC if you’ve been on it a long time to see what’s going on underneath the symptoms management. That can give you more information to take to a Dr.
A great team won’t push you into surgery. My dr told me repeatedly I could back out at any point up until the anesthesia kicked in.
A great team won’t refuse you surgery when you are ready for it. That’s for endo and adeno. That’s for laparascopy diagnostic surgery and hysterectimies. If you want your uterus gone, keep looking till you find someone who will do it for you. No matter your age [as a legal adult]. No matter “well you might want kids later.” Fuck ‘em.
Some people never want to do surgery and only use meds. Some people want surgery but don’t want to do meds. Some people want non pharmacuetical pain management like pelvic floor therapy or tens machines. Some people want medical marajuana. Or someone wants all of it. We all deserve to have care that considers what we want and need, helps us live life the way we want to be living it.
Period underwear works so much better than anything else I’ve used for bleeding especially since I can’t really use tampons or cups. I’m using Knix right now but I’ve also used Thinx, KindredBravely, and Aisle. Something about the underwear helps me pelvic floor relax more and so I experience less cramping. Can’t explain it.
Composition Notes:
Writing this post was so interesting. I love pulling together what I’ve learned on a topic and sharing it. I’ve done it for a bunch of different things in my life and in this letter.
Even my book Name Your Work is about sharing a robust process for language devleopment
It’s a way of documenting things for myself and for others. How can I make something I learned through experience a smoother learning curve for someone else?
But that’s not the only kind of writing I do. I also do the more artsy-fartsy, feeling, reflecting, ideating, theorizing essay stuff.
Substack is a space where both end up existing in the space AND at times in the same post.
Like this week.
It opened with a feelings-ridden personal story. AND THEN moved into Stuff to Know about Endo.
I’m playing with a longer personal essay on period pain and endo… and this is a testing ground for that in a way. But also trying to then ease its way into listy-lists?!
Two forms, one letter.
I found the transitions and start/stopping really difficult to figure out. I definitely didn’t land the plane on a smooth reading experience.
Anyway. Felt like a meta-level comment on the whole thing would let us brush off the lack of conclusion. *brush**brush*
There. Much better.
With Love, Dana
SUPER IMPORTANT NOTE. I use the language of Women in this piece. I’m focusing on the barriers to my care as a cis, white woman with class privileges and quality health insurance because shit, if I went twenty years without help, imagine what someone else faces trying to get care?! Trans men and nonbinary folks. Black women. Queer women. Intersex folks. THESE FACTORS CANNOT BE OVERSTATED. If you’ve had a uterus at any point in your life, endo can affect you. But it is not my experience and I’m talking through my body’s experiences here.
this literally couldn't have come at a better time. today I was diagnosed with PMDD and what is very likely adenomyosis, which I'd never heard of before today. I was shown imaging from a recent ultrasound, where I got to see my "bulging" uterus and abnormal cysts on my ovaries. my doctor talked with me about my options, and at even the mere suggestion of birth control I bristled. what am I, in high school? you're really trying to disrupt my body's NATURAL RHYTHM?! but then I looked (through tears, because i'm on day 23) at that black and white, fuzzy image of my uterus and realized, maybe my holier-than-thou "natural route" is not exactly cutting it. in fact, i'm here, in this room, crying to this doctor, because it's not.
anyway, that's a lot of personal stuff to dump here on the internet—clearly I'm still reeling a bit—but I just want to thank you, Dana, for your very nonjudgmental discussion of these issues. I don't know what my next steps are just yet, but it's writing like this that makes me feel more open-minded, informed, and hopeful about my options.