Learned Shame and Embarrassment Delayed My Diagnosis

There are a lot of things about growing up that are really disheartening (I was so prepared for quicksand and falling anvils.), but I think the most sobering thing was the realization that when it comes to doctors and healthcare, nobody really cares. I found that to be especially true in regard to women’s health issues (I should note, my whining is nothing compared to the treatment of women of color, non-cis-gendered or LGBTQ+ folks.).

I have endometriosis, which is a condition where the type of tissue that grows inside of the uterus starts to grow outside of it. Harmless, right? No. Hard no. Because the tissue grows outside of the uterus, it can’t really escape. When that excess tissue gets inflamed, it can cause serious pain on top of normal period symptoms. For me, endometriosis feels like someone has taken a cheese grater to my insides while stabbing me repeatedly in the sides. Along with the pain comes fever, hot flashes, dizzy spells, headaches (sometimes migraines), nausea, no appetite, fatigue, constant hip pain (It feels like someone is scraping my hips with needles.), back pain, and chest pain.

Why I couldn’t talk about my endo pain

Needless to say, it can be debilitating. I remember at school, my teachers would let me lay on the floor during class since I couldn’t sit up. I had to cancel things, reschedule things, or miss out on stuff altogether. The pain would wake me up at night, or keep me up at night. It was miserable, frustrating, and honestly, quite isolating. That kind of pain is hard to relay to other people, and the taboos surrounding women's health make it especially difficult. I (unfortunately) had abstinence-only sex education. My only takeaways from sex-ed were that if you had premarital sex, you’d get an STD and die; sex was only for making babies; and women's bodies were something to be ashamed of and embarrassed by. Anything involving women's health or development – periods, tampons, bras – was not to be discussed.

On the surface, that approach may seem harmless. However, in making young girls feel ridiculous and ashamed, you keep them down. I don’t need to explain how this is beneficial for some; bodily autonomy is the key to equality for women. Disempower women, and you have a better chance of keeping them down.

I’ll admit, that message worked pretty well on me. Even now, saying “period” or talking about my own health feels wrong and embarrassing, and it kept me from getting the help I needed. The focus was on tiptoeing around sensitive parents, so I did not learn anything scientific or beneficial. Because of that, I had no idea that the symptoms I was experiencing – pain, irregular periods, etc. – were major red flags that something was seriously wrong. I can’t help but feel betrayed by that, since I could have avoided five years of pain and illness.

I was 17 when it finally clicked that something was wrong. I had started on birth control pills to regulate my periods, which were sometimes several months apart. With those more frequent periods came all the endometriosis symptoms. Between November 2019 and February 2020, for whatever reason, I was having my endo symptoms on a daily basis. Needless to say, I was really unwell. I couldn’t really eat, I was in constant pain, and I felt like I was going to pass out at any moment. It was miserable.

Undiagnosed endometriosis left me feeling lonely and isolated

What was just as miserable, or perhaps even more so, was that I felt like no one believed me or like I couldn’t talk about what I was experiencing. I was embarrassed, and I was frustrated with myself that I couldn’t just get over it. Women are encouraged to endure pain all the time, so why couldn’t I? When I did bring it up, the reception wasn’t always that supportive, not even among my family. My mother told me that I just “didn’t know how to handle pain” and that I was “being dramatic,” and everyone else acted as if they knew better than I did.

Living with a chronic illness and chronic pain is hard enough as it is, but not having people believe you is isolating. I wasn’t completely alone, I had some wonderful friends and teachers who were incredibly supportive, and to whom I owe so much. Had it not been for them, I really think I would have given up.

Doctors were little help

I begged my parents for months to take me to a doctor. My mother finally took me to an OB-GYN in February 2020. That appointment was awful. I was frustrated because I’d felt so awful for so long, and I was really angry with my parents for blowing me off. I had blood tests, and scans. A few days later, my doctor called and said they thought I had a blood clot in my lungs (I didn’t.), which led to another scan. This was the start of about three years of constant doctor appointments, trying to get myself sorted. It became apparent very quickly that no one really cared. My first OB-GYN, in her defense, tried to treat me for endo, but there was no urgency or real concern (or so it felt). What that entailed was trying a new birth control every six months.

At this point, I’d been on five different pills. The fact that no one really discusses the potential side effects of birth control medications is astounding. The first one made me very ill, the second made me a sad and anxious mess, the third made me bleed the whole time, the fourth made me emotionally numb, and the one I’m on now is tolerable.

After a while of bouncing between birth controls, I was referred for pelvic floor therapy, which sucked. Because of the endo, anything internal is horribly painful. It feels like someone is rubbing my insides with sandpaper, and I nearly fainted and puked from the pain. Given that, I couldn’t do pelvic floor therapy, and was referred to a different doctor to discuss surgery. I met with a 60-year-old male gynecologist, and it was genuinely one of the most uncomfortable experiences of my entire life.

I had to wait an hour and a half for a 15-minute appointment, and I will never forget the doctor’s first words to me: “You’re fine. You don’t have Endometriosis, and you don’t need surgery.” He didn’t ask me any questions, except to make sure I really didn’t want a baby (At age 19, no thanks.). He looked at notes from previous appointments, got stuff wrong, and then corrected me over and over. He then spent the majority of the appointment (I wish I was joking.) telling me about how much vaginas can stretch. Of course, to get to the point where you can push a baby out one.

Self-advocacy finally led to surgery and relief

I gave up for a few months after that, because who wouldn’t? I didn’t give up for too long, though– I switched to Mayo Clinic a few months later, which was the best decision I’ve ever made. They have been incredible, and I cannot express my gratitude enough. Within three months, I’d been diagnosed, and had surgery to remove the excess Endo tissue. For the first time, I felt cared for. There was a real concern for my health, urgency, and commitment to making sure I felt better. Before surgery, I had an MRI, which eventually led to the decision to go through with surgery. The operation was easy, and the staff were amazing. I will never forget the week after surgery, when I met with my surgeon to go over the results. Sure enough, I had endometriosis. I remember that being a pretty emotional moment, since it was confirmation that I wasn’t crazy or dramatic. I cannot tell you how often I questioned what I was experiencing. When everyone else’s default is to deny or downplay, you start to do the same.

One year post-surgery, my life is significantly better. I’m not in debilitating pain, although my hip pain hasn’t really gone away. That’s a trade-off I’m happy to live with. I don’t share this story for pity or sympathy or anything like that; I wish these things were discussed more often. There’s power in talking, and there’s power in women sharing their stories. While I’m obviously not happy I have endometriosis, or that I lost so much time being in pain or feeling awful, I’ve learned a few valuable lessons. I’ve never been good at standing up for myself, but I’ve learned to advocate for myself, and see myself as worthy enough to deserve to be just as well and happy as anyone else. I’ve learned to trust myself more, which has been hard, and to listen to my body more.

You deserve to be happy, too

For anyone else struggling with endo (or anything else, for that matter), or thinking they might be, you’re not alone. There is a lot of power in that. Keep pushing. You deserve to be well and happy. Find those who believe you and love you, and lean on them. It’s okay to need people, and to be vulnerable. Don’t be ashamed of your experience… they win so long as women are.