By Kylea Wright – Baltimore, MD

At the end of August I was emailing with my lovely editor about writing a piece on intentional habit-setting during the fall to have a healthy winter. I had a plan for “Healthy September” and I was excited to put it into place – no preservatives, no eating out, minimal alcohol consumption and working out three times a week. No drastic changes, but I was hoping it would set me up for a healthy winter routine.

Unfortunately, September had a different plan for me. I got my period, for the first time in seven years. My birth control, an IUD called Mirena, had prevented me from having periods since I was 17, but now something had to be seriously wrong.

The worst part, though, was the pain. It was so bad I felt like I couldn’t move, and my partner and I spent several alarmed evenings googling, “What does a burst appendix feel like?” and “Can my IUD puncture my uterus?”. I normally avoid doctors and hospitals, but it eventually got so bad I had to make a gynecologist appointment.

The Check Up

I am not going to lie – I hate the gynecologist. So finding myself half-naked on a table, trying to explain that my uterus might be attempting to crawl out of my body and bring the rest of my organs with it, was not the best day of my life. I tried to explain how bad my symptoms were, but was not very good at advocating for myself, and I didn’t want to look like a preteen complaining about her periods.

I didn’t put all of my symptoms on the table, because I was a little embarrassed by them. I feel like I am going to cry all the time. I don’t want to do anything. When I have an orgasm it hurts really really bad, to the point that I am not sure I want to have sex anymore.

The doctor nodded as I talked and he started a “routine” check. He did a breast examination on me and about halfway through he paused. He took my hand and pressed it on my left breast about an inch below the nipple. There was a lump a little larger than a nickle. My heart stopped beating. He asked if that lump was normally there, and I told him absolutely not. He nodded, quickly performed my pelvic exam, and asked me to get dressed so we could talk.

Click to learn more about breast lumps and potential causes.

When he came back, he had some theories about what was going on with my uterus, but didn’t want to worry about them without further testing. He made it clear he was very concerned about the lump in my breast and that it was our “main priority.” He wrote an order for sonograms on both my breasts and an ultrasound on my uterus, then told me to make a follow-up appointment with him as soon as possible.

I had to wait two weeks for the ultrasound appointment. My partner came with me to the appointment for support, but he wasn’t allowed to go back with me (something I am still a little pissed off about). The ultrasound techs were nice, but wouldn’t tell me anything. One of them actually tilted the screen away from me so I couldn’t see what was going on. I was so frustrated  to be left in the dark about my own body.

The next day my doctor called to tell me everything was fine with my breast, but he needed me to come back in for a follow-up. The lab results showed I had HPV, which meant I needed to have a biopsy done. He was reassuring, but still vague even though I was going on a full month of painful period. I was emotionally exhausted, and I just wanted answers.

When I showed up to the doctor’s office the next day, the woman at the front desk told me to take a pregnancy test and I said, “No.” She didn’t understand what I meant and offered to get me water if I needed it. I couldn’t hold back anymore.

I spoke up: “I have an IUD, so I know I am not pregnant. I was in your office two weeks ago and took a pregnancy test and it was negative. I came in for an ultrasound two days ago and you made me take a pregnancy test and that was also negative. They took an ultrasound of my uterus and guess what – not pregnant. So, unless you are having me take this test for some other reason than to determine I am not pregnant I don’t want to take it, because I am not pregnant.”

She looked at me coolly and told me if I did not take the test the doctor would not see me. There was no choice.

I went into the bathroom and lost it. I had no control of my own body. My breast had turned on me and grown something scary. My uterus hurt all the time. I was bleeding at a rate that was ruining all my underwear, and mentally I couldn’t get myself to do anything. I didn’t feel like anyone was in a hurry to tell me anything and this stupid nurse didn’t even have the decency to let me skip the pee test. I cried, I peed in the cup, I cleaned up my face, took a deep breath and  promised myself I would say whatever I had to for the doctor to understand that something felt seriously wrong with me. I needed him to help me.

The Diagnosis

After the biopsy, the doctor asked me to get dressed so we could talk. When he came back into the room, he told me the lump in my breast was a cyst; that it was nothing to worry about. He explained that my symptoms and ultrasounds suggested I had endometriosis, a disease where uterine cells migrate to other parts of the body and attach there to form little polyps. These polyps then shed like normal uterine cells and cause the discomfort I had been experiencing. Normally the diagnosis is confirmed with a surgery to look for the polyps, but my case wasn’t bad enough to warrant that.

I knew I had to worry though. So I swallowed my pride, opened my mouth and told him on a scale of one to 10, the pain was an 11. I told him it was causing me emotional distress, and I felt like two weeks every month was too much to lose to these symptoms. I told him I had been gaining weight despite living a healthy lifestyle. I told him how much it was affecting my sex life, and how physically painful it was for me to even have sex. He listened intently, and when I was done, he said, “Thank you, I really didn’t understand your symptoms were that bad. We have options.” I was flooded with relief and felt hopeful for the first time in two months.

We spent the next 30 minutes talking about options and creating a plan of attack for all of my symptoms. We talked about pain killers, birth control, surgery, hormone treatments, anti-depressants and potential long-term effects it would have on my life. The more detail I was willing to give, the more my doctor listened and the more in control I felt. It was still a lot to deal with, but it was a start.

The Treatment

I am now almost two months into treatment and happy to report that I feel good. Really good. The medication my doctor and I chose (an ovulation blocking birth control) has eliminated most of my symptoms. I recently joined a support group to help deal with the leftover symptoms. I have used the last two months to educate myself – my google search history now includes What to do about painful orgams? How do I get blood out of everything I own? Why doesn’t anyone know anything about endometriosis? –  but I am more informed about my body and how to advocate for myself.

The new birth control has helped a lot. I can get out of bed, finish tasks I has been putting off for months and finally have clean clothing again. I also found some zen ways to compliment my mediation. I do yoga once a week, joined the gym and set a “big goal” of completing the Maryland King Crab Challenge, which consists of running a 10k, a half marathon and a full marathon all in one year. It’s given me positive things to focus on instead of feeling like I am “sick.”

Remember, your gyno doesn’t know the full story unless you tell it.

My biggest lesson from this whole experience? Advocate for yourself. There is so much shame around women’s bodies and so much mysticism about women’s health. If I hadn’t cried over that stupid pregnancy test, I don’t know how long it would have taken for me to tell my doctor how I was really feeling, and how long it would have been until I felt better.

I have my first follow-up appointment at the end of December and I’m looking forward to reporting how much better I am feeling. I’m also tempted to bring a water bottle with with yellow dye in it because fuck that pregnancy test.