According to womenshealth.gov, an estimated 11% of women between the ages of 15 and 44 suffer from endometriosis. However, that percentage is probably much higher due to lengthy prognosis and medical negligence.
Growing up, I had never heard of the word "endometriosis", but I was always told it was normal to have terrible cramps. I remember all the women in my life telling me to be prepared for nothing but pain during the week of my period, so when that fateful day actually arrived at the age of 15, I buckled up for misery.
Those first couple of years admittedly weren't terrible, but when I turned 17, my cramps started to worsen, especially when I got on the pill. This is sad considering how many doctors prescribe it to most girls and women of menstruating age to be used specifically to help cramps.
But I've learned over the last year that while debilitating cramps are common, they are most definitely not normal and should not be ignored. It is frustrating to experience pain and be ignored or brushed off by your doctor, but there is hope - you can find relief, and not just by a hysterectomy like in the past.
For over 11 years, I'd visited dozens of doctors: primary care physicians, OB/GYNs, endocrinologists, and others who told me over and over that cramps were normal and, basically, to take some Aleve and toughen up. Every single OB/GYN I saw just put me on a new pill when the past one hadn't helped, and they all had a laundry list of side effects I had to endure as well. I'd been on pretty much all of them: Ortho Tri-Cyclen, Ortho-Cyclen, Sprintec, Yaz (big yikes), and had even tried 2 IUDs (that's a story for another day) - all of which kept me in severe pain, and just downright miserable.
It wasn't until I was 28 that I finally started to fight for my health, no matter the cost. In 2021 I quit the pill cold turkey (do not recommend) and all of my other prescriptions I didn't depend on to stay alive, and started living more holistically.
After a year had passed with many terrible side effects from quitting the pill, I decided to see a dietitian to heal naturally with food and supplements. I mean, up until this point, nothing else had been working, so I figured, "why not?" During my first appointment, I had once again gone through my long medical history and suspicion of endometriosis, to which she replied, "I'm so sorry you have to deal with that!" Not only did she apologize for something that wasn't even her fault, but she also listed several doctors in our area who she believed would be able to help me. And just like that, a huge weight was lifted off my shoulders.
Why is it so hard for doctors practicing Western medicine to apologize or sympathize with patients? All we want is to be heard.
My dietitian had put me on a plan to help my cramps, and shortly after, I had made my own plan to schedule an appointment with one of the endometriosis specialists on her list. Within one month, I was (nervously) in said doctor's office 2 hours from home to discuss my symptoms (again) and make a plan to figure out what was going on. Once again, a weight had been lifted off my shoulders when the doctor actually listened to me. First course of action: an ultrasound, which was done within 2 weeks at my local hospital.
A transvaginal ultrasound is not comfortable. Before my ultrasound I was ordered to drink a large amount of water and not to use the restroom, which was almost miserable. I'm the type of person who, if I have to pee at all, I can barely concentrate, so driving almost a half hour to the hospital, waiting to be called to the imaging room, and going through the procedure was super rough for me, but luckily the imaging itself didn't take too long.
After the ultrasound, I had another appointment with the specialist, who had mentioned that my ultrasound hadn't shown anything, but that didn't mean much - endo could still be living in my body. Unfortunately, it's not always shown on an ultrasound, which he had warned me before in my initial appointment. He then gave me a list of options: do a biopsy (which he didn't recommend if I was planning to do surgery), laparoscopic exploratory surgery, birth control, a nerve blocker, or pharmaceuticals. He had honored my decision to quit birth control, but he wanted me to have all the options laid out for me. The nerve blocker scared me quite a bit and I was on a path of no unnecessary pharmaceuticals, so surgery it was.
He explained all the risks, had me sign some paperwork, and told me someone would call me to schedule the outpatient procedure. Within 3 weeks, and just 3 days shy of my 30th birthday, I was put under for exploratory surgery.
After 2 hours in the operating room and 1 hour in the recovery room, the specialist came in to inform me he had found and removed a significant amount of endo tissue in certain areas of my body. I was so relieved - not only did I continue to fight for myself for over 10 years because I knew something was wrong, but I finally had an answer to an issue I'd been living (painfully) with for so long.
There's no telling how long the relief from my surgery will last, but after almost one week after the procedure, I could already tell such a significant difference in my pain levels and other symptoms.
Never be afraid to seek out other doctors or professional help if you are being dismissed. You know your body best and you will always be your biggest champion. If you need assistance finding a more holistic-minded professional, please refer to our growing list.