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I’ve battled endometriosis for decades. Now I’m trying to conceive with IVF

Until I started my research into endometriosis I didn't realize how much treatment can impact my quality of life and ability to have a baby.
April Summerford is sharing her story so that other people with endometriosis don't lose 'decades' of their lives.
April Summerford is sharing her story so that other people with endometriosis don't lose 'decades' of their lives.Courtesy April Summerford

April Summerford, 36, from Fresno, California owns Women’s Health Leadership, a health and wellness coaching businesses, runs the support group, Beyond Endo, and hosts the FemFuture podcast, which covers women’s health. She has endometriosis and has participated in the ROSE study (Research Outsmarts Endometriosis) at the Feinstein Institutes for Medical Research at Northwell Health in New York. The study hopes to find less invasive ways to detect endometriosis and better treatments.  

My periods always felt crampy and excruciating. My mother and grandmother also experienced painful periods and my mother asked her doctors why it happened. They dismissed her saying that’s just how she was. Growing up, I simply accepted that periods just felt painful because that is what we've been told.   

But in my 20s my symptoms worsened. Suddenly, I struggled to work and get through the day. Any pain management treatments failed me. I told my general practitioner and hoped she would help. Instead she said something incredibly frustrating: She noted that they don’t know why I experienced so much pain but she hoped that it wasn’t endometriosis because there was nothing they could do to help me. Endometriosis is a condition where the lining of the uterus grows outside the uterus. It can lead to lesions or cysts on the ovaries, fallopian tubes, uterus, bladder and bowels. It is painful and can cause infertility. There is no cure.

For years, I had been telling her about my pain. I picked her because I thought a female doctor might feel more empathetic toward me but I received no answers and little help. At the time, I was agreeable so I continued seeing her and trying to survive the pain as best I could.

April Summerford's periods always felt awful and when she was younger she thought everyone had really crampy periods.
April Summerford's periods always felt awful and when she was younger she thought everyone had really crampy periods.Courtesy April Summerford

Around the same time I was trying to get pregnant and couldn’t. While infertility can occur at any age, I was in my mid 20s and many of my peers didn’t struggle to get pregnant like I did. Finally, my doctor sent me to someone she considered an endometriosis specialist who I thought could help with my pain and infertility. He said the only thing he could do was surgery to clean out my fallopian tubes to see if that would help. I knew so little about endometriosis and its treatment that I agreed to it.

While the surgery diagnosed me with endometriosis (the condition currently is only diagnosed via surgery), the type of procedure he performed actually made my pain worse and caused me to feel ill often. He burned the lesions with an iron — I didn’t learn until later that this is ineffective at removing the endometriosis. But in hindsight, this makes sense because after this surgery my symptoms worsened.

Soon after I tried in-vitro fertilization for my infertility. The process felt painful and didn’t work. At times, I felt frustrated and angry. I experienced so much terribly complex and unexplainable pain. Some days the grief overwhelmed me.

After experiencing infertility starting in her 20s, April Summerford is hoping that this round of IVF will help her become pregnant.
After experiencing infertility starting in her 20s, April Summerford is hoping that this round of IVF will help her become pregnant.Courtesy April Summerford

After a few years, though, I realized that my emotions weren’t helping me find better treatment or get pregnant. So I began researching endometriosis to learn more. When my original endometriosis doctor recommended a drug with terrible side effects to treat my pain, I fired him and looked for a new doctor. At the time, all the research found that drug ineffective and it didn’t seem like this doctor understood how to treat my condition.  

My new doctor performed a better surgery, what’s known as excision, to remove my endometriosis. I have stage IV endometriosis and deep infiltrative disease. My quality of life changed dramatically and I consider it a huge success even I still could not get pregnant. I was no longer in agony and since surgery in 2017 I have experienced what feels like a normal life.

I met with a new fertility doctor as well. I first tried intrauterine insemination (IUI) and that failed.  Next week, I start the medication to stimulate my ovaries, a first step in IVF. I feel confident and excited about the next stage.

April Summerford hopes to raise awareness of endometriosis, which affects 11% of people with a uterus.
April Summerford hopes to raise awareness of endometriosis, which affects 11% of people with a uterus.Courtesy April Summerford

But part of me still feels frustrated. Infertility treatments can be painful and invasive. And, I had hoped that I would have been past this problem by now. I feel like I am receiving really good treatment from my fertility specialist and feel hopeful at times. Though, I admit that I’m cautiously optimistic. After so much time grappling with inadequate medical treatment for endometriosis and struggling to get pregnant I try to temper my expectations. That way I am not hurt too much and I can move onto the next stage. If IVF doesn’t work this time my husband and I will likely start the adoption process. We want to start our family.

Sharing my story seems important because I don’t want other women to lose decades like I did. That’s also why I participated in the ROSE study. It’s mind boggling that in 2022 surgery is still needed to diagnose endometriosis. I hope that others don’t get stuck in the loop of not getting treatment that they need and struggling to get pregnant. Endometriosis is progressive and becomes worse without treatment.

When I was younger, I felt like I needed to do whatever doctors told me. As I have aged and learned more about endometriosis I feel more empowered to research treatments and seek out what feels right for me. I have learned to protect myself from people who second guess my decisions. At times, I wish I didn’t have to do so much research and advocate for myself. But that’s why sharing my experience feels so important. I hope others do not have to follow the path that I did.   

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