This is a conversation about period pain, and everything that goes along with that.
One day in the Autostraddle Slack “office” we were casually chatting about tracking our periods and our partner’s periods; soon our banter turned into a rousing discussion about period pain, uterus pain, the medical establishment being incompetent at best and harmful/dangerous at worst (often both!), PMDD, and how we as individuals manage the pain that people are so often told is simply “part of having a period / uterus / body!” You know, just a regular day at the office.
We decided to collect our thoughts, feelings, and experiences about period pain into a roundtable for you. Here it is!
Comments
This was good to read and also horrifying
I’m really glad you guys did this roundtable! About a year after I started my period, I began to have OVERWHELMING pain during periods, ate ibuprofen constantly and still had pain. Luckily I had an aunt who had had endometrioses and she convinced my dad and me that I should go to an OBGYN, so when I turned 18 I went to Kaiser and had a great experience with the doctor there. I told him my family history and symptoms and he diagnosed me with endometriosis, although like you guys said he acknowledged he needed to do a surgery to get an official diagnoses. I got put on progesterone only birth control and take it continuously and haven’t had a period since! My quality of life is much better and I’m so glad it works for me. I’m also glad my aunt ignored all the other females in my family who were telling me its nothing to go see an OBGYN and that my dad is a sensitive man to my pain and encouraged me to make the appointment. I guess I’m going to be on birth control most of my life until I want to have kids? After the pandemic I want to schedule another appointment just to make sure my endometrioses isn’t somehow getting worse even if that means a laparoscopy, I’m curious what anyone elses experiences with laparoscopic procedures are? I can’t stand the thought of knives, and cutting…. But I also want to be in control of my health!
Hey I got laparoscopic surgery done when I was 27 (2018) and it was the best decision ever. I did, however, do my research and went to one of the best medical centers in california for this (UC San Diego). Surgery took about an hour. Healing time was pretty fast and my scars are itty bitty. I’ve heard some doctors leave you with big scars. The only thing I regret was getting an IUD. The side effects were terrible for me. I recently had it removed and I feel like a new person.
Thank you everyone for sharing.
Adding one experience here that’s not covered above: mittelschmerz! (I.e., ovulation pain.) Personally, this shows up for me as a random stabbing sensation on one or the other of my pelvis, lasting anywhere from 5 minutes to a couple of hours on-and-off, and sometimes coming with light cramping. Shows up about 2 weeks before I bleed…
oh so THAT’S what that is!! sometimes it’s so bad i have to rebound-test myself to make sure i don’t have appendicitis and every doctor i’ve mentioned it to has just been like “yep sounds like a Reproductive Clusterfuck Problem but there’s nothing funky on the ultrasound so…who knows?”
It’s so validating to read all of your stories. I’m getting a hysterectomy next week due to endometriosis and suspected adenomyosis. It’s so frustrating that there aren’t more options for those with periods, other than years of gaslighting, medications, and surgeries.
I’m in menopause, my last period was in late 2017 and I STILL sometimes get menstrual cramps! Yet one more thing that I had NO IDEA to expect with perimenopause and menopause (see also night sweats, insomnia and brain fog).
Y’all, after years of obscene pain and so much bleeding, I finally found an ObGyn who offered a partial hysterectomy (remove the uterus and cervix, but leave the ovaries), which means I have no more pain and bleeding, but still technically cycle so no immediate menopause. This was one of THE BEST decisions I have ever made. It isn’t talked about much since doctors always think we might change our mind and want to grow babies in that uterus. (Nope, not I! No regrets here!) So maybe your doctor won’t suggest it as an option, so I’m telling you about it so that you can ask if it seems like a reasonable option to any of you reading this who feel like you may never find relief.
I just had a partial hysterectomy this summer due to a pretty large fibroid which had been causing relatively intense bleeding and gosh, I am so happy about it. I’m lucky that although I did want babies, my wife wanted to grow them, so I can feel unreservedly happy about never having a period again. The surgery is no joke if you can’t have it laparoscopically, but 10 out of 10, would recommend.
I’m so thankful this team is willing to share such personal info. It’s incredibly encouraging to know other people struggle with endometriosis and period pain too. Malic has inspired me – I’m going to renew my abandoned efforts to plan my work month around my cycle and endo pain.
I appreciate Kayla mentioning flu-like symptoms; I don’t get those, but I do get what I describe as a really bad cold for several days ahead of my period most cycles. Since that syndrome now overlaps with covid symptoms, it’s an extra fun time. (If anyone else gets this or knows what it’s about, I’m so curious about what’s going on in my body! My surface research suggests that no one is sure whether it’s real or not.)
I also grew a (non-cancerous) ovarian tumour a couple of years ago and am so so grateful to have been prepared for a journey of self-advocacy by everyone who had written or talked about their experiences with medical practitioners who were SO SURE it was just “a normal bad period” or “this is what happens as you move into your 30s,” without any real investigation.
It took me about two years of being like “I feel like getting a cold every single month and then it just goes after a couple of days” before I realised this was always a few days before my period. Don’t know the cause but it’s 100% real and it’s exhausting when other people don’t think stuff like this is real just because they don’t experience it.
Chills and fever sound like your hormones are messing with your thermoregulation – it happens to me too, right before my period I feel hot and sweaty for about 48 hours and then suddenly REALLY REALLY COLD as soon as I start bleeding. No idea what causes it though – bodies are just WEIRD.
I’ve experienced cold/flu symptoms too, in relation to another cause of hormone change. Mine were caused by a contraceptive injection, I got flu like symtoms for a full 2 months after each injection (low level high temperature, painful joints and huge levels of fatigue), just when I was starting to feel better, another injection was due and made me ill again. This all stopped as soon as I stopped having the injection (I had 3 so it basically took a year of my life away). The only reason why I was able to know exactly to the day when the temperature started was because I was asked to keep an eye out for infection symptoms from the injection site (a temperature being one of them), so for a few days I thought it was that, but after it was completely healed a few days later it was clear that it wasn’t that. I reported my symptoms but was told it wasn’t one of the listed side affects, and it was highly unlikely to be the reason. I’ve always struggled with symptoms of a hormone imbalance (not made better by the hormone pills my gp kept chucking at me), I often have 2 week long periods that wipe me out energy wise (I now take iron, high strength vitamin b complex, magnesium and zinc, which has helped greatly, I rarely get bad fatigue now). I think the injections just exacerbated an already existing issue.
Anyway, yes, in my experience, hormones changes can make you feel ill!
I feel like I need to make this PSA about endometriosis: ablation is not a cure, nor is hysterectomy. Please please look into excision surgery for endometriosis – it is the only way to actually remove all of the endo tissue and not have it grow back (like with ablation). And ultrasound cannot prove the absence of endo (only laparoscopic surgery) so don’t listen to any doctor who tells you you don’t have it because they couldn’t see it on a scan.
Nancy’s Nook is a FB education group which is hugely informative and I beg anyone who suspects they have endo to spend some time researching there.
Thanks for this article. I wishwe’d talk more about how much pain we’re all in each month. It’s ridiculous how we just put up with it or with the fact that doctors don’t really do much about it.
That was very interesting and also horrifying. Shows me another insight in the American healthcare system. (And once again it’s not pretty…) So sorry you had to go through that. Heather I once had a patient in a nursing home with a vaginal-rectal fistula and I remembered the gynacologist I consulted said it’s most likely cancer, because the other causes are generally only seen with people in developing countries without access to healthcare.
Something that’s not known by everybody so I’m just putting it out here because it’s important: if you (or a loved one) is post menopauze (12 months without a period) and has a bleeding that feels or looks like a (light) period – you need to see a doctor! They need to do at least a pap smear and ultrasound. There is a risk of malign causes, and that risk rises with age. (It’s very rare under 50.) Endometrium carcinoma has a fairly good survival rate, but early diagnosis is key.
Some years ago I had a myoma, a benign uterine tumor, that ended up weighing about 500 grams when it was removed. Size of a large grapefruit. Before it was taken out I was bleeding so much in one hour I lost several clots of blood the size of my hand and was not able to stand up anymore because of how faint I was. Fun times. Right now there’s some minor issues and a small spot of endometriosis but I’m thankfully doing okay.
Endometriosis is a weird disease, some people have one tiny spot and need opiates for the pain, others have large amounts of tissue in their abdomen and have fairly little pain and symptoms. You can have endometrial tissue in your lungs even – and start coughing up blood periodically.
Oh and for who wants to track their periods, I like the app Clue. No gendered language and a very informative and inclusive website too. If I go to my gynacologist I just show her my phone with all of the statistics. Very convenient.
Thank the Goddess I’m now past all that but I. Suffered. So. Much. from the age of 9 to 53. And I also so felt alone and of no importance to the medical profession.
I calculate that in total I lost three years of my life to intense pain. So I feel you, and I’m so grateful that you’re talking about this to break that ridiculous cycle of misinformation and neglect.
Re: Kayla’s part, for me sleeping helps with period pain, too! 🙂 If my cramps are bad, I’ve found that lying in bed, sleeping/dozing and moving as little as possible is about the best thing I can do. Unfortunately it’s not always possible to do that, e.g. I once had an important math exam on the first day of my period (which for me is generally the worst day in terms of pain). Not fun.
Thankfully, most of my periods aren’t too painful, but I do have some experience with crying, vomiting, and (almost) fainting from period cramps ☹ So I’m sending virtual hugs to everyone who experiences that level of pain every month ❤🩸
Thanks for sharing about this!
A couple of thoughts: I have developed no shame letting my school principal know that I’m taking a day for cycle pain. It should be normalized!
Also, so glad to hear that folks are finding treatment for endo. Ask your Docs about Orilissa – it’s a non-hormonal, hormone blocker and it’s been a dream for me. It’s new and only FDA approved for a 2 yr treatment right now. It might be a good option for someone (like me) who is adverse to IDUs and the pill.
wow! i wonder if i have the ovulating pain thing!?! i always thought it was gi related, but! now i am so curious.
i have had great success with motherwort tincture for making cramps and the whole period experience more mild and manageable. i think many generations preceding us relied on plants to even things out over our hormonal cycles and much of that knowledge is lost. on that note the book “this is yr brain on birth control” was suuuper validating about how the medical system knows next to nothing about how our hormonal cycles affect us, so we all gotta find our own way !
plus one for cups (smallest size anywhere!) just not working for me and that being frustrating!
woof, my main issue is PMDD mood swings and near constant mograines (both of which are much more manageable now due to monophasic birth confrol and triptans), but i sometimes get random bouts of extreme abdominal pain and nausea and like, stop digesting food? like I’ll eat pizza on Wednesday night and barf up undigested pizza 24 hours later while thinking “i KNOW i chewed more than that”
and i just called it gastroparesis…
but now I’m like:
is it actually endometriosis??
when it first started i went to a gynocologist for an ultrasound thinking i had cysts and he refused to give me a pap smear because i was “too low risk” and kept referencing my “history of drug use” even after I explained that I didn’t have track marks, I had blown several IVs from my last extreme abdominal pain ER visit after the nurse refused to heed my advice re: pediatric needle size
never did get that ultrasound, either
Was there a clear connection in timing to your cycle? (Harder to tell now you’re on monophasic birth control.) If not, endometriosis as a cause seems very unlikely as a cause for gastroparesis. If there is, I’m still having a hard time making a connection on a biomedical level between the two that can explain it. Most often the cause of gastropareseis is unknown unfortunally. Hope you can find something that helps!
it happened either when I ovulated or right around my period, but some people think that gastroparesis can be effected by hormone levels. The pain was intense – came in waves and had me doubled over.
It’s murky because this was also around the time when I started getting lax about being vegan, but I think it mostly had to do with supplements I was taking to help with my hormonal migraines, which can raise progestin levels? I didn’t get a migraine for three months – incredible!! – but then the stomach thing started.
I still have a Weird Stomach and now I throw up everytime I get a head cold?? Also the summer of 2019 I ended up in the ER with colitis when everyone else just barfed for two days so who the fuck knows?? Didn’t have insurance so I didn’t come back for the biopsy they wanted to do on my insides ~~~
So basically now I just get panic attacks when I feel even remotely nauseated
Thank you so much for talking about this! I always tell people that I’ve been in a violent car accident (as a pedestrian, smashed between cars, jaws of life had to pull me free) and I’ve had terrible periods, and I’ve preferred the car accident. It took a decade of doctors not believing me to finally get a diagnosis of hormonally induced abdominal migraines, which I was told ‘no one really knows much about’. Maybe it’s caused by a cyst or fibroid? It’s like if food poisoning and a migraine had a baby, and my favorite symptom feels like nausea radiating through my arms and legs. I’ve had multiple occasions where I had to immediately lay down wherever I was, even if I was walking on a public sidewalk (true story!). The only thing I’ve found that helps is taking massive amounts of ibuprofen the second I get my first PMS symptoms (crying at random commercials) and continuing for the ~3 days before my period starts and the ~3 more days until the worst of my symptoms are over. I always have the 1,000 count bottle of ibuprofen on hand and if anyone ever tried to take it from me I’d probably fight them to the death.
Thank you so much for this article, it made me feel so much less alone re: Horrible Horrible Pain and also not being able to use menstrual cups. I feel so bad that I’m still using disposable pads but my vagina just refuses to accept a menstrual cup without Cirque de Soleil contortions and the thought of carrying a dirty fabric pad in my bag, even if it’s turned inside out and secured in a ziploc, makes me feel vaguely sick.
On that note, my favorite (sarcasm) period symptom is the Horrible Unending Nausea that I get during the first day and then again for a day or two after it ends. Granted my body generally reacts to anything happening by trying to turn itself inside out but this is extra bad. (Though it did bond me with my grad school bestie who got me a paper towel and held my hair when she walked in on me puking in the library bathroom.)
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Thank you for this very important topic! I am so sorry all of you have had and are having such horrible painful ordeals! The medical world is so fucked and doesn’t give a shot about women, other ppl with uteruses, or trans ppl. No research, no diagnoses, no treatments, no cures. And often no understanding and no empathy.
I had a few years of stabbing pain in my vagina/cervix that would get worse if I moved. It was scary and just so horribly painful. I got the endometriosis/birth control pills response and was like, fuck no, I’m a lesbian, and just suffered until I went to an acupuncturist/herbologist. I was afraid of the pain of needles so she prescribed herbs and I drank the horrible tasting tea for several months maybe one year and my symptoms gradually went away. I was also doing intensive therapy and healing work in recovery from childhood sexual abuse and I still believe it was connected. I think the pain could have been flashbacks of rape. There’s no way to know, and the pain never came back, so I’m just grateful that something worked.
I hope everyone suffering gets excellent care and treatment and a cure!