‘Ugh, you can have my kids. Just relax and it’ll happen.’ My journey ended with a hysterectomy.’: Woman diagnosed with Endometriosis after years of infertility, finally finds peace in a ‘beautiful, unexpectedly child-free life’

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“Like anyone who’s experienced infertility, I’ve heard a lot of ‘miracle baby’ stories. You know, the tales of couples who go through unimaginable heartbreak in the pursuit of parenthood and in the end are rewarded with a baby because they ‘never gave up.’

During the almost four years I tried to get pregnant it seems everyone had a miracle story or unhelpful advice to share. Gems like, ‘you can just adopt,’ or ‘Just relax and it will happen,’ or ‘Ugh, you can have my kids.’ These uncomfortable encounters could have been avoided if they had read even one article on what not to say to someone going through infertility.

Courtesy of Kati Sepi

While I know the stories and advice were well-intentioned, the problem is they have the opposite effect. They imply that you can somehow control whether you get pregnant. If it doesn’t happen it’s because you didn’t want it enough, think positively enough, relax enough or try enough. The truth is that statistically, some of us will have to walk away from infertility without a baby, despite our best efforts. I am one of them.

It’s been almost six years since I started trying to get pregnant. I had read a dozen books on fertility and knew exactly when I ovulated each month so I was optimistic it would happen quickly. Still, month after month, I was left holding a negative pregnancy test. Each one deepened my heartbreak.

After a year of trying, I saw my doctor to see what was wrong. The next few years of my life were consumed by appointments, invasive tests, surgeries, medications, and lots of tears. First, I was diagnosed with low progesterone, then uterine polyps, then fibroids and endometriosis. I had been in physical pain for years but this was the first time a doctor had mentioned any of these words to me. From the ages of 12 to 32 I had seen dozens of doctors, but my pain was always dismissed. On one instance the doctor actually laughed and told me I was ‘just dehydrated.’ One asked me if I had been sexually abused because he thought the pain was in my head. Many told me, ‘That’s just what periods and ovulation feel like.’

Courtesy of Kati Sepi

I found out later my experience is very common. Endometriosis is a disease where tissue similar to the lining of the uterus is found outside of the uterus, in other parts of your body. Symptoms vary but often include: severe pelvic pain which may be worse during your period or ovulation, pain with sex and/or urination, gastrointestinal symptoms, nausea, fatigue, and of course, infertility. It’s common, 1 in 10 women have it, yet it takes an average of 8 years to get a diagnosis.

Three years ago, I had my first surgery to remove the fibroids and endometriosis. It turns out my reproductive organs were a complete mess. Endometriosis was splattered throughout my pelvic cavity, including multiple organs, my left ovary was adhered to my uterus, both ovaries were filled with endometriomas (blood-filled cysts), and my uterus had multiple fibroids and polyps. No wonder I wasn’t getting pregnant. I couldn’t believe that so much was going on in my body and so many doctors had missed it.

I came out of that surgery full of hope. With so much disease removed, my surgeon was optimistic that I would soon be pregnant. To speed things along, we decided to do a round of In Vitro Fertilization (IVF). The process took a huge emotional and physical toll. With renewed hope comes the possibility of deeper despair when it doesn’t work. And, despite my diligence in following the detailed instructions, injecting myself with every required medication, going to all the vaginal ultrasound and blood draw appointments, being put under for the egg retrieval, it didn’t work. I was left with no viable embryos and unwavering despair.

Not only that, but within a few months my pain was back, worse than ever. I wore maternity leggings every day because jeans hurt too much and when I had a pain flare, the inflammation would make my belly swell to where I looked six months pregnant (a symptom known to sufferers as ‘endo belly’). Every time I coughed it felt like an ovary had exploded. I had to bring a change of clothes with me everywhere because I never knew when I would bleed through my clothes. I kept a pillow between me and my seatbelt because the pressure was excruciating. Through all of it I did my best to keep my life together. I travel a lot for work and had to push through a lot of pain to keep going. I developed stomach ulcers from all the Ibuprofen I used trying to dull the pain. There were times where the pain got so bad I couldn’t stand up. I have memories of sitting on the ground of airport corridors, shopping malls and sidewalks, basically wherever I was when the pain would hit.

I knew I couldn’t keep living like this. Infertility seemed to have no limits in what it would take from me. I had sacrificed my mental health, physical health, relationships, time and energy. I felt numb. I couldn’t feel the things that used to bring me joy. I didn’t want to be around anyone. I was broken and drowning in grief.

I decided to pause and consider my next steps. I had been so singularly focused on trying to get pregnant that the rest of my life was on pause. With the help of an amazing therapist, I decided that it was time to walk away from my dream of being a mother and start living my life again. I remember her saying to me, ‘It’s okay to put yourself and your health first. It’s okay to stop.’ In a culture of ‘never give up,’ she was the first person who said this to me. On hearing her words, I immediately started sobbing. It triggered something deep within myself that was waiting to be released. I then realized that I did not have anything left to give to the pursuit of parenthood. My heart could not stand one more break. My body could not take any more treatments. My marriage couldn’t survive my self-protective retreat inward.

Courtesy of Kati Sepi

Two years ago, my infertility journey ended with a hysterectomy. After hundreds of negative pregnancy tests, I saw my last one just minutes before being wheeled into surgery.

I wasn’t really sure how to move forward after this. I had heard so many miracle baby stories but no one had told me the ones of those who had walked away from infertility empty handed. Was it possible to create a life filled with love, joy and meaning when it didn’t look the way you’d planned? I was lucky to have one person in my life who had done this. A few days before my surgery she lovingly placed her hands on my shoulders, looked directly into my eyes and said, ‘You’re going to be okay.’

I hadn’t realized how much I needed that. I’ve replayed those words many times since my surgery. Physically, I started feeling better almost immediately, the surgery greatly improving my quality of life. But emotionally I had a long way to go and I felt very alone.

I hung the following quote by Melanie Notkin on my bedroom mirror and read it multiple times a day. ‘My infertility is circumstantial but my life is not barren. And to the women who are on the other side of hope, know that you are more powerful than your womb. You are maternal whether or not maternity ever comes. You are a woman and your love and how you choose to offer and receive it, is a gift. And you’re not alone.’ I knew I wasn’t alone, there must be thousands, even hundreds of thousands who had experienced this. But how could I connect with them?

Early this year, I started my website, ChasingCreation.org. I thought if I started talking about my experience, others would reach out to me and we could walk this path together. What I didn’t anticipate is in less than a year, I would have connected with literally thousands of men and women who are childless not by choice.

They have shown me that it is possible to navigate grief, find healing, and design a beautiful, unexpectedly childfree life after infertility. I can now tell you hundreds of stories of those who have done it. It’s unfortunate that their stories so rarely get told.

I’m following in their footsteps to create a life I love and am starting to feel like myself again. I have a renewed lust for life. I’ve found healing through hobbies and passion projects. I pour love into my relationships and receive love in return. I am content with my family of two.

Every day I’m contacted by those who are at the end of their fertility journeys. Those who have sacrificed all they can or who have run out of options. They feel scared, hopeless and alone. I’m now able to tell them what I’ve learned to be true. That sometimes you have to let go of a dream to make room for new ones. They may not look the way you imagined, but they can be just as amazing.

If you are walking away from your dream of parenthood, I would like to lovingly place my hands on your shoulders, look into your eyes and tell you, ‘You’re going to be okay.’ Others have walked this path before you. You are part of a community of incredible people. When you feel alone, you can call out to them through your grief, asking them if it’s still possible to create a life you love after so much loss. They will respond with a resounding, ‘yes,’ and will walk with you to show you how.”

Courtesy of Kati Sepi

This story was submitted to Love What Matters by Katy Seppi of Asheville, NC. You can follow her on her website and Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more inspiring stories of women accepting a child-free life here:

‘My miscarriage crushed me. I screamed and cried in the nursery closet, clenching my son’s wubby so hard my palms bled. I was inconsolable.’

‘I openly said, ‘I never want kids.’ No one took me seriously. ‘You’ll change your mind when you meet the right guy.’ I’m not any less of a woman.’

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