I’ve recently come across many fellow bloggers discussing the negativities of birth control and I thought it was an opportune time to share a personal story of mine that I’ve been thinking about writing for a long time.

Now ladies (and I say ladies because I doubt any guy will want to read this), this post will definitely be the most personal I will ever get, but I thought I’d share it in hopes of helping other women who have experienced/are experiencing it. I’m also sharing it to bring light to an issue that has been silenced for far too long. 

Here’s my story:

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The Prequel

About 10 years ago, my mom would get ill around the same time every month. She went to multiple doctors who couldn’t give her an answer. Eventually, she visited a specialist in women’s health who diagnosed her with endometriosis. A year’s worth of doctor visits and they couldn’t diagnose this; a reason why endometriosis truly is a silent disease.

For those who aren’t aware, Endometriosis (Endo) is a disease in which the inner lining of the uterus (the Endometrium) begins to grow outside of the uterus. During a monthly period, a woman’s body sheds her uterine lining. When that lining is being shed from the outside of the uterus in an Endo case, the body is working harder, thus causing various symptoms.

Since Endo has shown signs of being hereditary, my mom’s doctor put me on birth control at the age of 16 to try and prevent me from getting it in the future. I’ve been on birth control since then and it has absolutely nothing to do with preventing pregnancy. Honestly, if it were up to me I wouldn’t be on it. It makes me crazy and emotional, I gain weight as it lowers my metabolism and, if I forget to take it, here comes the flow. With that medication I’ve tried many other remedies like essential oils and acupuncture. I spent a lot of time looking for the right supplements such capsules made with equipment like blister pack co packers, so I knew they would be trustworthy.

Fast forward to my life, summer 2017, at 25 years old.

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The Downfall

I flew back home from Germany to Indiana to stay for a month. A few days after I arrived, I started my period. My time of the month has always been extremely awful for me: intense and crippling cramps; debilitating nausea; an uncommon heavy flow; missing out on school, work, and social activities. For the first 3 days of it, I’m usually up all night getting sick, curled up in the fetal position, writhing from the pain shooting down my legs and up my back, hopping in and out of a hot bath in hopes of easing it all, sweating but shivering at the same time and popping multiple extra-strength Tylenols with no results. But none of that compared to this specific night, where all of those symptoms were intensified times 100.

I go the entire night like this and the majority of the morning. When the sun came up, I thought maybe I’d finally be able to get some sleep but that was far from what happened. For 3 or 4 hours I squirmed, moaned and cried. My entire body felt like it was shutting down. I kept feeling like I needed to use the bathroom but once I would move I would throw up. I would try and get out of bed to go to the bathroom but had no strength to stand up. At one point, I fell out of bed and onto the floor, realizing that I couldn’t move. I curled up into a ball, violently shivering, and laid there for almost an hour, feeling like I was drifting in and out of consciousness.

After coming to, I tried to crawl to the bathroom that was only 5 feet away. As I’m crawling, I’m dragging with me the towel that was underneath me because I was uncontrollably vomiting. With that vomiting, my entire body would seize up like I was experiencing tourettes.

This was the worst I had ever felt in my entire life.

I managed to get a hold of my mom and told her I needed to go to the hospital because I couldn’t take it anymore. Since my legs were completely cramping up and I didn’t have the strength to lift my head, her and my dad managed to get me into the car and to the hospital. I was pumped with IVs, pain meds and who knows what else. The nurse told me I was hyperventilating on top of it all, which I don’t doubt one bit (I mean, I really thought I was dying.) They tried running tests and doing exams on my body but came forth with no medical results. I was released from the emergency room and went home, feeling weak as hell. I took it easy for the next couple of days and gave my bartending shifts away at work, promising to return on Saturday.

Saturday comes and I made the 30 minute drive to the lounge I worked at to start my shift. The entire time I was driving I just felt off, like something still wasn’t right with me. I get inside the lounge and go to turn on the lights when the world around me started going hazy and my body, beginning from my feet and working its way up, start convulsing. Here we go again. I slowly lowered myself to the ground and laid there, absolutely freaking out. After a few minutes, one of my coworkers found me and called my dad from my phone. While waiting for him to get there, they had to pick me up and put me on the couch because I couldn’t walk. I just wanted to go back home but my dad insisted on taking me to the hospital, again.

In the emergency room, they made the decision to admit me overnight to run tests, thinking I had experienced a seizure. I was deemed a “fall risk” and spent an entire night in the hospital, not allowed to get out of bed unless I was assisted by a nurse and hooked up to a heart monitor. 24 hours later, I was told that my Phosphorous levels were substantially low. At a low rate, it can begin to cause seizures.

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The Decision

I made an appointment with my gynecologist the next week to update her on my condition and what has recently happened to my health. After some discussion, she decides that we need to do surgery so she can see what’s going on inside of me. A week before I leave to go back to Germany I have to have surgery. You can imagine the stress I was under, wondering if I would make my flight that I didn’t get insurance on and trying to figure out if I was going to make it back to Europe at all.

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The Diagnosis

I went in for a Laparoscopic surgery, where they made a tiny incision through my bellybutton, stuck in a camera to see the inside of my uterus and then performed the operation without actually cutting me open. Can you guess what they found?

Endometriosis

While I didn’t have a substantial amount of Endo in my body, my Common and External Iliac Veins, which have many nerve endings, were predominantly affected. This was the reason I had extreme leg and back pain.

I also had Uterine Polyps, which are little bumps caused by the overgrowth of the outer lining of the uterus. Those were scraped off and sent to the lab for testing, with everything coming back benign (thank goodness!).

So, to sum everything up, when I had a period, my body was working extra hard to shed everything but it was actually struggling due to the uterine polyps and the thick lining of my uterus. The Endo was making me so sick that I couldn’t eat and was vehemently vomiting. Because of that, I lost a ton of nutrients, causing my phosphorous levels to significantly drop, leading to hospitalization and thus surgery.

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The After-Surgery Treatment

My doctor, who I legitimately look at as my hero for saving me, wants to make it so I don’t have a period whatsoever for the foreseeable future. If I were to start having regular periods, my uterine lining would thicken up and the Endo would continue to grow. The problem with Endo is that it’s uncurable; it can only be treated.

I am now taking a daily dose of LoEstrin, a birth control pill. I’m also on a 6 month treatment plan with a drug called Lupron, which is an intramuscular hormonal injection administered once a month that’s used to treat the symptoms of endometriosis. The drug is usually given to men to treat the symptoms of prostate cancer, so you can imagine how awful the side effects of the medication are for women. I’m to expect symptoms of menopause while on the medication, such as hot-flashes, mood swings, weight gain, etc.

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The Future

After I complete the Lupron treatment, I will continue taking my birth control pills.

Endo will always come back, especially at my age and not having any children yet. I will have to have a surgery to help Endo again, whether that be 2 years from now or 15.

This is Why Women Need Access to Birth Control Pills

Sometimes it has nothing to do with wanting to prevent pregnancy but there are actual medical benefits of taking birth control pills if you’re faced with a certain disease. I used to take it to prevent the endo and now I’m taking it so I can prolong when the endo comes back. Did you know that with the recent decision by the U.S. government a company can claim exemption from covering a woman’s birth control pills if they cite religious or moral reasons? This decision is putting me at risk, among millions of other women, from not receiving the medication we need to keep the Endo away. If my insurance claims they don’t want to cover it because it’s against their morals or values, then I could be looking at hundreds of dollars a month for a pill that could save me.

The problem with endometriosis is that it is all too often misdiagnosed. For example, I was having gastrointestinal and bladder problems 3 years before I was diagnosed with endometriosis and my medical record actually states that my conditions are a spasmed bladder and Irritable Bowel Syndrome. In reality I have neither, it was the endometriosis the entire time. There are only around 250 specialists in the world who can diagnose and treat endometriosis thoroughly, which is another reason it is widely misdiagnosed.

Since endometriosis doesn’t affect how we look we’re often discriminated against for the pain we’re in. I can’t tell you how many times I’ve had to call off work or cancel my attendance to an event and I hear “Well, you don’t look sick.” Of course I don’t, and that’s the problem with this disease; it’s so incredibly debilitating yet is hidden inside of us, hence why it’s called the Silent Disease.