Forewarning: some of this may be TMI!
Endometriosis? What the hell is that? I never had heard of endo prior to being diagnosed with it at age 22. Little did I know, about 1 in 10 women have endometriosis in the United States but many women are misdiagnosed or just think that the pain they’re feeling is “normal.” Definitely NOT normal. Endometriosis is a painful disease where your uterine lining grows outside of your uterus. It can also cause fertility problems when trying to get pregnant.
When I was in high school, I used to have terribly painful periods, even to the point that I had to stay home from school. I remember feeling embarrassed and so wimpy because none of my friends had to stay home because of their cramps. When I was 22 years old vacationing in Hawaii, I experienced crippling pain but this time I wasn’t on my period. Here I was in paradise but barely could even leave the hotel room. Me in Hawaii and not on the beach?! Yeah, something def wasn’t right. When I got home, I made an appointment with my OBGYN who speculated that I had endometriosis based on my reoccurring symptoms. After doing an internal ultrasound (so not fun), they found that I had a 6cm cyst inside my ovary (that’s the size of an orange fyi). Uhhh no wonder I was in so much pain! My OB insisted on removing my entire ovary because it would be “impossible” for her to remove the endometrioma cyst without harming the ovary. Ummm, so here she was telling a 22-year-old woman (who wants to have kids someday) that she needs to remove her OVARY?! *Cue freak out.* I decided to get a second opinion and I’m so glad that I did!
At this point, I was in the teaching credential program and I remember there were several days where I just literally had to lay on the ground during recess while I student taught because I was so desperate to find pain relief. I decided to see a specialist at UCSF who confirmed that she thought I had endometriosis. Doctors aren’t able to confirm a woman has endometriosis until actually performing surgery to see what’s going on internally. This doctor was literally a Godsend who told me she could perform the surgery without removing my ovary. HUGE RELIEF! So 2 months later, I had my first laparoscopic surgery. That means they only needed to make two tiny incisions right below my underwear line and also went through my belly button. The doctor found that I have stage 4 endometriosis and the surgery actually took an hour and a half longer than expected. I was basically in bed for the next three weeks recovering. I will spare you from the boring details of recovery but let me tell you, I’ve never watched so much Netflix in my life!
After about 6 weeks, I began to feel more like myself again and the pain was completely gone. I was so relieved and couldn’t believe how much better I felt. I think I had just gotten so used to the pain that I didn’t even realize how bad it was. For the next 9 months, I felt great until suddenly, I didn’t. My symptoms came back and were worse than ever. I was in my first year of teaching and would wake up every night for 2-3 hours in excruciating pain. I basically would pop a few Advil and have to wait it out until I could fall asleep again. Deprived sleep and first year teaching? Terrible combination. I went in to see my specialist and she did an ultrasound to find that a 6cm cyst grew but now this time in my other ovary! Are you kidding me?! How did this happen? I just had surgery less than a YEAR ago.
Long story long, a few months later, I had my second endometriosis surgery. This time I felt really emotional and lonely. I was on summer break after my first year of teaching and Andrew had just moved a couple months prior. I was so frustrated that I was dealing with another surgery and felt so discouraged on how to prevent this from happening again. Post surgery, my doctors decided to put me on birth control pills and told me to skip the placebo pills to suppress the disease. So I haven’t had a real period since June…super weird. They also suggested that I freeze my eggs because I may have trouble getting pregnant in the future. This is the last thing a woman in her mid-twenties wants to hear. My parents are so amazingly supportive and offered to pay for the procedure (freezing your eggs isn’t covered by insurance) but I decided to hold off. I know that if God wants me to have kids someday naturally, I will. For some reason, I have a peace that I’ll be able to have babies someday whether naturally or through adoption. But I’m not even going to think about that yet!
It’s been 7 months since my last surgery and I feel great but I’m also nervous that my pain is going to come back. I’ve decided to research some natural ways to help prevent my endometriosis from flaring up. I now only eat hormone-free, grass-fed meats (whenever I can) and have cut back on dairy about 80%. Apparently, going gluten-free is supposed to help too but I’ve yet to make that jump. I also go to acupuncture a couple times a month and I honestly think that’s helping (I used to be super skeptical). Sooo that’s basically where I’m at with my endo journey. I felt compelled to write a blog post because after being more vocal about my endometriosis on social media, two women have contacted me and told me that they were diagnosed with endometriosis after hearing about my symptoms. I’m hoping that sharing my story can help bring awareness to endometriosis because I remember feeling super alone and I don’t want anyone else to feel that way! If you have any questions or have endometriosis and want someone to chat with, don’t hesitate to reach out!
Before surgery #1 (April 2016)
Before surgery #2 (July 2017)