Endometriosis is a chronic disease where the tissue lining the inside of the uterus starts growing on the outside of your uterus. Endometriosis affects 1 in every 10 reproducing females — that’s 176 million women worldwide. There is no known cure or cause for endometriosis. You can only be diagnosed with endometriosis through surgery. No scans or tests can show endometriosis. A doctor can only detect it and visually see it through surgery. Surgery does not get rid of endo for good; it just removes the current lesions or cysts, which alleviates pain — temporarily. They usually always grow back. It’s something that most women live with for the rest of their lives. This results in women having multiple surgeries throughout their lifetimes, some every year. Some women even have their ovaries removed or get a complete hysterectomy to deal with the pain. Here is my personal journey with the horrible disease.
“I couldn’t possibly have this disease.”
Since I started puberty and for as long as I can remember, I’ve always had very painful, debilitating abdominal cramps. Not just any painful cramps. These were the type of cramps that taking 3 Midol’s or 3 Advil’s did not relieve. For a day or two at the start of my period, every single month I would take off from school or work and I would curl up in fetal position and cry all day long from the pain I was experiencing. I would non-stop vomit, and not be able to eat or drink anything. The pain was so bad; I couldn’t even fall asleep or take a nap to make the day go by quicker. I remember the first time my dad saw me in this pain, he thought I was dying and he was ready to take me to the emergency room. He had no idea this was a normal monthly thing for me. I always wondered how I would be able to go on living the rest of my life knowing that this is what was in store for me each and every month. I used to cry and ask God why I wasn’t born a male. Or why me, out of everyone that I know, I had to get these painful cramps. If you are reading this and wondering what these cramps feel like, just try to imagine someone repeatedly stabbing your lower stomach with a pair of open scissors; all while your uterus is doing jumping jacks. Actually, all of that would probably still not be as bad as the cramps that I get.
Growing up, I always read about endometriosis in Seventeen Magazine and Cosmopolitan. It seemed like every article about periods had a mention of it. I never gave it any thought. My only symptoms were the painful cramps, “I couldn’t possibly have this disease,” I thought to myself. When I was about 15 or 16 years old, I finally decided to see a doctor about my period. The pain was unbearable and I didn’t want to keep missing out on life because of it. It took a lot of courage for me to see a doctor about this. I always felt shy and embarrassed for some reason, or that I was being a crybaby. I had a female Muslim doctor at the time. I was so excited to be at the doctor’s office that day, I thought maybe this was the last time I’ll have to deal with this kind of pain. Like I was about to start a new life or something. All of that excitement quickly ended, after I explained to the doctor why I was there. How my periods were so painful that I was always missing school, how I couldn’t get out of bed or eat. Her response were these exact words “All girls get their period, some handle it better than others,” and I was sent on my way. No referral to see another doctor, no prescription for pain medication, nothing. There are no words to explain how disheartening it was to live in this constant pain and have a FEMALE doctor just brush you off like what you were experiencing was nothing, or not bad enough.
The pain was unbearable and I didn’t want to keep missing out on life because of it.
I suffered through the cramps and painful periods for another year or two and then finally decided to go see a gynecologist. I was terrified. Terrified of going to a gynecologist, terrified of my mom finding out, and terrified of someone being all up in my vagina. I filled out the forms and used my best friend’s address instead of mine, in case they decided to send me mail about my office visit. How could I explain to my mom why I was at a gynecologist’s office without her thinking the wrong thing?
I had an awesome experience with the doctor that day. She asked me some questions then offered to put me on birth control pills to help with my period or write me a prescription for some heavy-duty pain meds. “Birth control??” I thought. How would I explain THAT to my mother? She would have a heart attack if she found out. I opted for the pain medication and the doctor gave me monthly refills for the next year or so. She said if this didn’t help, birth control would be my only other option. I was excited to get my period and try out my new pain pills. The pills helped a lot, but only if I took them early enough before my period started. Otherwise I was still miserable and in pain during that time of the month. While on the pills, the pain wasn’t THAT bad anymore. Phew! I finally found some relief.
I was on those pills for a few years and life was fine it seemed. Then out of the blue one day, I started getting really weird, dull pains on the left side of my abdomen. The pain would last for a week or so then disappear. It would come back every few months and switch between my left and right side. I didn’t know what the heck it was, but as long as it was disappearing on its own, I didn’t give it much thought. Google’ing the symptoms told me it was either my appendix or maybe an ovarian cyst. I always told myself that if the pain got worse I would then go see a doctor.
Low and behold a few months later, I made an appointment and went to see the gynecologist. Just for a check up and to put my paranoia’s to rest. The doctor asked if it would be okay to do an ultrasound just to make sure everything on the inside, down there, was OK. I agreed. During my ultrasound, the doctor said she noticed a cyst on my ovaries and wanted to send me to see an ultrasound-tech to get a better look. She said this was probably “nothing”, and that most cysts are benign and that I have nothing to worry about. The next week I was back to see the ultrasound tech. I learned that I had 2 cysts on each ovary. My doctor wanted to watch them for a few weeks to see if they would rupture on their own. I was back in her office 6 weeks later for another ultrasound. I was hoping and praying the cysts would be gone. After seeing the ultrasound tech again, I learned that not only were my cysts not gone, they just tripled in size. My doctor immediately put me on birth control in hopes that it would help the cysts decrease in size or disappear. I was due back in another 6-8 weeks.
Two months later, I was back at my doctor’s office for another ultrasound. This time the cysts were the size of tennis balls. My doctor scheduled me for laparoscopic surgery to have the cysts removed the following Monday. This was my first surgery and I was terrified. I was scared and nervous but excited to have these cysts removed so I can move on with my life. Waking up from my surgery, still in the hospital bed, I learned that my cysts were “chocolate cysts” or blood filled. Right then and there, I was diagnosed with endometriosis.
Right then and there, I was diagnosed with endometriosis.
I was stage three, with stage four being the most severe. I had just turned 24 a month earlier and now my doctor was speaking to me about seeing a fertility specialist. Even though I am stage three, that doesn’t necessarily mean I have it worse than women who are stage one. Alhamdullilah I have been mostly pain free since my surgery. I get flare ups here and there under extreme stress or anxiety but I do feel lucky for how everything worked out. It’s very important for us as young women to take care of our bodies. When something doesn’t feel right, and your doctor is blowing you off or making you feel how I felt, go see another doctor. Keep seeing doctors till you find one that genuinely cares about your health and well-being. I suffered for over 10 years in excruciating pain before being diagnosed. There is no doubt in my mind that endometriosis was the cause of all my pain.
Many celebrities suffer from endometriosis and are very vocal about it, including fellow Virgo, Padma Lakshmi, who co-founded the Endometriosis Foundation of America.
“Pain did become part of my life in the most subtle and menacing way because when it creeps up on you slowly over the course of your life, contemporaneously as you’re becoming a woman, you kind of associate it as part and parcel of your own development. So in a very sinister way, it fools you into accepting its existence. It pervades your life. If that kind of pain came on suddenly just one day, you would never accept it. You would know that it was wrong. It would be an emergency, the same level of pain. And yet because it slowly grows and is chronic, somehow you just accept it. “ – Padma Lakshmi
Actress Lena Dunham also recently announced on social media that she has cancelled her press tour for the upcoming season of her hit show, Girls, due to the ugly disease:
Other celebrities who suffer from the condition include Julianne Hough, Halsey, Lacey Schwimmer, Tia Mowry, Jillian Michaels, Baby Spice Emma Bunton, and many more.
If you are Muslim or come from a traditional Arab family like me, you know there is a stigma surrounding us unmarried females and often-times we are shamed for anything that has to do with our reproductive systems, even the things we can not control. F**k Arab cultural pride for a second and go to the damn gyno and get checked out. Get on birth control if you have to. Birth control changed my life. Not only did it take away my pain but it has also helped my endometriosis from growing and spreading. After I had my surgery, my mom forbade me from telling any of my close cousins or family about my surgery. My own father didn’t know I had surgery. Arabs always have a way of turning something into something else that it’s not, and my mom was only trying to protect me. If endometriosis is not detected or managed early enough, you run the risk of the endo growing and spreading to your internal organs. In extreme, but also rare, cases of stage four endo, it could spread to your brain, heart, lungs, blood vessels, etc. If you suffer from killer cramps and put your life on pause every time Aunt Flow comes around, please go see a doctor. It could be the best thing you do for yourself, your body and your future.