I was 25 years old when I was first diagnosed with endometriosis. At the time, most of my friends were getting married and having babies. I was young and single, and I felt completely alone.
My dating life was essentially halted by all my surgeries — five in three years — and medical needs. In a lot of ways, it felt like my life was put on pause. All I’d ever wanted was to be a mom. So when my doctor suggested I pursue fertility treatments before it was too late, I jumped in head first.
Shortly after my second round of IVF failed, my three best friends all announced pregnancies within days of each other. I was 27 at the time. Still young. Still single. Still feeling so very alone.
Living with endometriosis significantly increases the risk of experiencing anxiety and depression, according to a 2017 review in the .
I fell into both categories. Thankfully, I was able to find support along the way.
People to talk to
I didn’t know anyone in my real life who had dealt with endometriosis or infertility. Or at least, I didn’t know anyone who was talking about. So, I started talking about it.
I began a blog just to get the words out. It didn’t take long before other women experiencing my same struggle started to find me. We talked to each other. I even connected with a woman in my state who was my age and dealing with endometriosis and infertility at the same time. We became fast friends.
Ten years later, my daughter and I are about to go on a Disney cruise with this friend and her family. That blog gave me people to talk to, and led to one of my closest friendships today.
Information my doctor didn’t have
As I was blogging, I slowly started to find my way into online groups of women dealing with endometriosis. There, I found a wealth of information my doctor had never shared with me.
This wasn’t because my doctor was a bad doctor. She’s great and is still my OB-GYN today. It’s just that most OB-GYNs aren’t endometriosis specialists.
What I learned is that the women fighting this disease are often the most knowledgeable about it. In these online support groups I learned about new medications, research studies, and the best doctors to see for my next surgery. It was actually from these women that I got a referral to the doctor I swear gave me my life back, Dr. Andrew S. Cook, of Vital Health.
I frequently printed up information from online support groups and brought them to my OB-GYN. She would research what I brought to her and we’d talk about options together. She’s even suggested different treatment options to other patients based on information I’ve brought to her over the years.
This is information I never would have found if I hadn’t sought out those groups of other women dealing with endometriosis.
The reminder that I wasn’t alone
One of the biggest benefits of these groups was simply knowing I wasn’t alone. Being young and infertile, it’s very easy to feel singled out by the universe. When you’re the only person you know in daily pain, it’s hard not to fall into a “why me” frame of mind.
Those women who were in my same shoes helped to keep me from slipping into that same despair. They were the reminder that it wasn’t just me going through this.
Fun fact: The more I talked about endometriosis and infertility, the more women in my real life came forward to tell me that they were experiencing the same struggles. They just hadn’t talked about it openly with anyone before.
With endometriosis affecting about women, chances are high you personally know other women dealing with this disease. When you start talking about it, they might feel more comfortable coming forward and doing the same.
A check in on my mental health
I was one of the women who dealt with depression and anxiety because of endometriosis. Finding a therapist was one of the most important steps I took in dealing with it. I needed to work through my grief, and that wasn’t something I could do alone.
If you’re concerned about your mental well-being, don’t hesitate to reach out to a professional for help. Coping is a process, and sometimes it requires extra guidance to get there.
Support resources you might find helpful
If you’re looking for some support, there are a few places I can recommend you start. I personally run a closed online Facebook group. It’s made up of only women, many of whom have dealt with infertility and endometriosis. We call ourselves The Village.
There is also a great endometriosis support group on Facebook with more than 33,000 members.
If you’re not on Facebook, or aren’t comfortable interacting there, the Endometriosis Foundation of America can be an incredible resource.
Or, you could do like I did in the beginning — start your own blog and seek others who are doing the same.
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.