When your doctors say your debilitating periods are normal

Alright, fellow uterus-owners, it’s time for a chat. In case you’ve somehow never noticed, life can be a liiiiittle bit unfair sometimes (understatement of the century? Yup!). But one thing I’ve realized after almost 23 years of being a woman is that we’re badasses. We’re so resilient that we often put up with things that NOBODY should have to deal with, all because we’ve grown accustomed to dealing with hard situations when other people brush off our concerns.

The medical field saves billions of lives every day. It’s an incredible thing for many people. And I know that we’re lucky if we have access to it at all (but THAT’S a blog for another time...). But the thing is, some fields of medicine, such as gynecological surgery and even simple gynecology, are not as developed as others. The funding isn’t there, the medical education isn’t there, and even many doctors with the best intentions don’t have the capability to totally help. And that’s why it’s important for you to keep voicing your concerns, keep trying to find the right doctor, and STOP settling for a life of pain, illness, or emotional distress simply because you feel like a burden to your doctor.

This is an issue that I’ve personally struggled with for years; I have endometriosis (stage 4) and adenomyosis. Endometriosis is a disease affecting over 176 million women-- about 1 in 10 in the US. In a nutshell, it means that the tissue that would normally line your uterus grows beyond your uterine walls, attaching itself to your internal organs and all throughout your abdomen. It is often accompanied by adenomyosis, which is when this same tissue, that would normally line your uterus, chooses to grow WITHIN the structural wall of your uterus (note: this can grow independently, and is not solely the sidekick of endometriosis). So really, both diseases happen when your uterine lining decides it’s a strong, independent woman who DON’T NEED no uterine walls. It would be kind of inspiring if it wasn’t painful and, well, an incurable disease.

Having endometriosis and/or adenomyosis feels like there are a thousand tiny paper cuts lining your entire pelvic region...but the pain doesn’t stay localized. It radiates up your back and down your thighs, it gives you tension headaches, and it can make you get sick. A lot. Not only is it physically painful, but it affects every part of your being. Fatigue consumes every inch of you, and your feeling of self worth decreases with each passing day as your chronic pain tricks you into believing that your body is “defective,” or “damaged.” Long story short: it sucks. But this post isn’t just supposed to be my sob story. In fact, it’s supposed to be sort of empowering, actually. It’ll get there, just give me a sec, OK?

The thing about endometriosis is that, despite the fact that 1 in 10 women have it, it usually takes about 7 years (or more) for them to be heard, believed, and actually diagnosed-- and it’s usually even longer for adenomyosis. While adenomyosis can be diagnosed by special ultrasounds, endometriosis can ONLY be officially diagnosed through laparoscopic surgery. And, as you can imagine, doctors aren’t super eager to cut you open without reasonable cause. While I think that’s a fair reservation to have, it often causes years of unnecessary pain.

I got my first period at age 14, and I was officially diagnosed with endometriosis and adenomyosis at age 22. Within those 8 years, I grew accustomed to constant pain that one doctor told me was comparable to LABOR PAINS. I dealt with hormonal imbalances that SHOULD have driven me totally insane (well, like, the BAD kind of insane). And, worst of all, I dealt with the emotional burden of being told by doctor after doctor (6, to be exact) that they “didn’t see anything wrong,” or maybe I just had “low pain tolerance.” Sometimes they’d sarcastically say, “welcome to womanhood!” or patronizingly ask, “have you tried talking to a therapist?” But here’s the thing: endometriosis usually CAN’T be seen on scans or imaging machines, my pain tolerance is SKY-HIGH, this is NOT just what normal “womanhood” feels like, and this pain is NOT just in my head.

It took me 6 different doctors before I found one who would listen to me, treat me like a worthwhile person with valid concerns and real pain, and invest the time to figure my pain out. Or, in other words, a doctor who would do their job. The ONLY reason I was diagnosed with stage 4 endometriosis was because I KNEW that my other doctors were missing something, and I sought out a specialist who would listen. Even once I was under the care of a specialist, the only reason I was diagnosed with adenomyosis was because I DEMANDED that they check for it. Remember, when it comes down to it, YOU know your body better than anyone.

If you think your menstrual pain is abnormally high, there’s a 1 in 10 chance that it IS. So many people are told they’re just overreacting. They’re told to “take a midol.” They’re told “being a woman is just hard.” And, yes, being a woman is hard (please take all of the above as exhibits A-Z)...but it shouldn’t be blatantly unfair.

I’m here to tell you that you are NOT a burden to your doctors. Whether you’re suffering from physical illness, mental illness, chronic pain, or you’re fighting a different kind of battle- it is your doctor’s JOB to help you. Endometriosis has no known cure, but that doesn’t mean I’m going to throw in the towel and just continue to “suck it up.” I’m lucky enough to have great health insurance, so I’m going to continue visiting new specialists, trying new treatments, advocating for what I need, and reminding myself of my personal worth. And you should too, to the best of your ability.

So, in conclusion, fellow women warriors: we have quite a fight to fight. To be believed. To be respected. To be validated. To be treated as human beings. What I want you to take away from this article is that, whatever it is that you’re “sucking up,” deserves to be addressed. Maybe you’re like me, and your horrible periods are symptomatic of something much greater, like endometriosis. Or maybe there’s something else that has been brushed off by doctor after doctor, either because they didn’t believe you or they don’t understand your urgency. I know it’s hard- but I implore you to try again, use your voice, state your case clearly and adamantly, and remember that you. are. WORTH. IT.

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