Last month on “The Bachelor,” a contestant, Lexi Young, surprised viewers by choosing to prematurely leave the show because she and bachelor Joey Graziadei weren’t on the same timeline when it came to children. Young had been open about her endometriosis diagnosis and said at the time, “Because I have endometriosis, having children is going to be a lot more difficult.” It was refreshing to see endometriosis be discussed on such a large platform, because the truth of the matter is, for many dating with chronic illness, these conversations are happening all the time.
Endometriosis is a painful condition that affects one in nine people with a uterus. It can be described by tissue similar to the lining of the uterus that is found growing in other areas of the body. This condition can cause debilitating pain and infertility. Living with endometriosis can make the day-to-day difficult, not to mention dating.
From my own experience, I can say that the brutal reality of living with endo is hard to work into first-date conversations. It’s hard to navigate when the right time is to bring up the ins and outs of living with endometriosis. Letting someone see you at your most vulnerable can be really nervewracking. The questions and “what ifs” can quickly become overwhelming: How will they react when I cancel plans because I’m in pain? Will they leave when I tell them sex can be painful? When should I bring up children?
I learned it was best to be transparent – early on – about my reality and how endo affects my life. Of course, that may lead to potential heartbreak, but someone who isn’t willing to support and accept me fully (endo and all) isn’t worth the time and tears.
Instead of pitying me, he told me I was brave.
When I went on my first date with my now-fiancé, I was terrified and almost canceled. I was having a bad pain day, and none of my cute clothes would fit from bloating in my stomach. I wasn’t feeling confident. Luckily, I didn’t cancel and instead put on my comfiest dress. He called me beautiful, and the conversation was easy. I felt comfortable with him. Comfortable enough to tell him my story – and instead of pitying me, he told me I was brave.
In navigating my illness while being in a relationship, the biggest thing I can emphasize is communication. Before I started staying over at my fiancé’s house, I made him aware of what my “bad nights” can look like and how they can affect me the next day. Those days I’m so run down I can barely leave bed. My pain makes me vomit and, at times, pass out.
The first few times I let him see that side of my life, he made me feel at ease. He would comfort me and offer ways to help me, he would heat up my heat pack for me, and he would bring me water and painkillers. Being with him on those bad days that I’m usually alone made them that little bit easier to tolerate. Not once did I feel embarrassed or guilty about our days spent in bed. That was one of the moments I knew he was the boy I wanted to marry.
A year into our relationship, I underwent a second surgery for endo. These surgeries involve removing endometriosis tissue from organs and, in my case, separating organs that have been stuck together from such intense tissue growth. Sitting in the car after my specialist appointment, I looked at him and immediately burst into tears. He could tell the news I had just received wasn’t good.
My endometriosis was quite advanced, and it had attached itself to most of my pelvic organs and caused some horrific damage. That day in the car that I showed him my surgery pictures, he couldn’t understand what they meant, so through tears, I told him, “Kids, I might not be able to have kids. I am so sorry.”
We had already spoken about kids – how we both grew up in big families and wanted that for ourselves. At that moment, I felt like I’d let him down, that it was the last straw, the final thing that would make me “too much.” Instead, he held my hand and he kissed me. He told me over and over, “We’ve got this, I’m not going anywhere.”
From that moment, we started trying for kids, and somehow, it didn’t feel rushed. Sure, there was pressure from the odds that were given to us, but we still kept trying. We downloaded the ovulation apps and took it in stride. Scheduled sex can get old quickly, but we tried our best to make it fun – an adventure, a time to experiment and try new things. That was what we’ve become really good at: making the best of a bad situation.
I won’t sugarcoat it: it was hard dealing with infertility. We spent hundreds of dollars on specialists and medications. We were in our early 20s, and while most of our friends were still clubbing and living like 20-somethings should, we were trying special diets and staying in on weekends to save money in case we needed to do IVF. For two years, we tried. It was hard on us, but it made us stronger. At times, I felt like a failure when I’d come back with a negative pregnancy test, but just like that day in the car, he would kiss me and tell me it was going to be OK.
Since then, I’ve undergone seven more surgeries for my endometriosis. I completed IVF, and I am now 20 weeks pregnant with a miracle baby boy.
Years ago, I couldn’t have imagined any of this would be happening. I saw myself as “too much.” I thought my endo made me hard to love, because it’s easy to feel that way when your body is seemingly turning against you. How can you love yourself when you despise your body and the pain it causes? But no matter your diagnosis, you are worthy of love – not just from others, but most importantly, yourself.
Haylee Penfold is a 20-something writer from Australia. She is the health and sex editor for Ramona Magazine, where her focus is on chronic illness advocacy and inclusive sex education.
