As many as women have endometriosis. In 2009, I joined those ranks.
In a way, I was lucky. It takes an average of 8.6 years from the onset of symptoms for most women to receive a diagnosis. There are a lot of reasons for this delay, including the fact that diagnosis requires surgery. My symptoms were so severe that I had surgery and a diagnosis within six months.
Still, having answers didn’t mean I was fully prepared to take on my future with endometriosis. These are the things it took me years to learn, and that I wish I’d known right away.
Not all doctors are endometriosis experts
I had an amazing OB-GYN, but she wasn’t equipped to handle a case as severe as mine. She completed my first two surgeries, but I was back in major pain within months of each of them.
I was two years into my battle before I learned about excision surgery — a technique the Endometriosis Foundation of America calls the “gold standard” for treating endometriosis.
Very few doctors in the United States are trained in performing excision surgery, and mine certainly wasn’t. In fact, at the time, there were no trained doctors in my state, Alaska. I ended up traveling to California to see Andrew S. Cook, MD, a board-certified gynecologist who’s also trained in the sub-specialty of reproductive endocrinology. He performed my next three surgeries.
It was expensive and time-consuming, but in the end, so very worth it for me. It’s been five years since my last surgery, and I’m still doing a great deal better than I was before seeing him.
Know the risks of any medication you take
When I first got my diagnosis, it was still common for doctors to prescribe leuprolide to many women with endometriosis. It’s an injection meant to put a woman in temporary menopause. Because endometriosis is a hormone-driven condition, the thought is that by stopping the hormones, the disease can be stopped as well.
Some people experience significant negative side effects while trying treatments that include leuprolide. For example, in one 2018 involving female adolescents with endometriosis, side effects of a treatment regimen that included leuprolide were listed as memory loss, insomnia, and hot flashes. Some study participants considered their side effects irreversible even after stopping treatment.
For me, the six months I spent on this drug were truly the sickest I felt. My hair fell out, I had trouble keeping food down, I somehow still gained about 20 pounds, and I generally just felt tired and weak every day.
I regret trying this medication, and if I’d known more about the possible side effects, I would have avoided it.
See a nutritionist
Women with new diagnoses will likely hear a lot of people talking about the endometriosis diet. It’s a pretty extreme elimination diet that many women swear by. I tried it several times but somehow always wound up feeling worse.
Years later I visited a nutritionist and had allergy testing done. The results showed high sensitivities to tomatoes and garlic — two foods I always used in large quantities while on the endometriosis diet. So, while I was eliminating gluten and dairy in an attempt to reduce inflammation, I was adding in foods I’m personally sensitive to.
Since then, I’ve discovered the Low-FODMAP diet, which I feel best on. The point? See a nutritionist before making any major dietary changes yourself. They can help you formulate a plan that’s best for your personal needs.
Not everyone will beat infertility
This is a tough pill to swallow. It’s one that I fought against for a long time, with my physical and mental health paying the price. My bank account also suffered.
Research has found that of women with endometriosis are infertile. While everyone wants to have hope, fertility treatments aren’t successful for everyone. They weren’t for me. I was young and otherwise healthy, but no amount of money or hormones could get me pregnant.
Things can still work out better than you dreamed
It took me a long time to come to terms with the fact that I’d never be pregnant. I truly went through the stages of grief: denial, anger, bargaining, depression, and finally, acceptance.
Shortly after I reached that acceptance stage, the opportunity to adopt a little girl was presented to me. It was an option I hadn’t even been willing to consider just a year before. But the timing was right, and my heart had changed. The second I laid my eyes on her — I knew she was supposed to be mine.
Today, that little girl is 5 years old. She’s the light of my life, and the absolute best thing to ever happen to me. I truly believe every tear I shed along the way was meant to lead me to her.
I’m not saying adoption is for everyone. I’m not even saying everyone will get the same happy ending. I’m just saying I wish I’d been able to trust in everything working out back then.
Dealing with endometriosis was one of the most isolating things I’ve ever experienced. I was 25 years old when I was first diagnosed, still young and single.
Most of my friends were getting married and having babies. I was spending all my money on surgeries and treatments, wondering if I’d ever get to have a family at all. While my friends loved me, they couldn’t understand, which made it difficult for me to tell them what I was feeling.
That level of isolation just makes the inevitable feelings of depression worse.
Endometriosis significantly increases the risk of anxiety and depression, according to an extensive 2017 review. If you’re struggling, know that you’re not alone.
One of the best things I did was finding a therapist who could help me work through the feelings of grief I was experiencing. I also sought out support online, through blogs and endometriosis message boards. I’m still connected today with some of those women I first “met” online 10 years ago. In fact, it was one of those women who first helped me to find Dr. Cook — the man who eventually gave me my life back.
Find support wherever you can. Look online, get a therapist, and talk to your doctor about any ideas they may have to connect you to other women experiencing what you are.
You don’t have to face this alone.
Leah Campbell is a writer and editor living in Anchorage, Alaska. A single mother by choice after a serendipitous series of events led to the adoption of her daughter, Leah is also author of the book “Single Infertile Female” and has written extensively on the topics of infertility, adoption, and parenting. You can connect with Leah via Facebook, her website, and Twitter.