This Woman's 'Gluten Intolerance' Turned Out to Be Uterine Cancer

This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.

It all started in June 2014 when I was 35. I was traveling, socializing, working a lot on my career as a senior project manager in the food industry, and enjoying life in general. Then I started experiencing symptoms.

I was very bloated all the time, and I knew something wasn't right. My stomach was so swollen I couldn't even see my feet when I looked down. I went to my primary care physician, known as a general practitioner, or GP, here in the United Kingdom, and she didn't take me seriously. She never even touched or examined my stomach. After three visits to her in three months, she suggested the bloating might be food-related and referred me to a gastroenterologist.

The gastroenterologist couldn't find anything wrong, so I was diagnosed with a possible gluten intolerance, though my lab results were normal. They told me to give probiotic yogurt a try. it didn't help much.

More than a stomach issue

The bleeding started that November. I started bleeding between my periods, so I decided to see a different GP, who encouraged me to see a gynecologist. Here in the UK, unless there's an emergency, we always have to see our GP first. In a 10-minute appointment, you explain the problem you're having, and the GP decides if you need a specialist's opinion. If the GP decides that you do, it can take almost a month to even receive a referral letter.

I'd already booked a flight to surprise my sister in Macedonia, where my family lives, for her birthday. I didn't want to wait for the referral letter, so I decided to take the trip and ask my sister if she had a gynecologist I could see. She did, and at the appointment, the doctor and her staff performed a full range of checkups, including a pelvic exam and a transvaginal ultrasound.

That's when they discovered it—a 5.5-inch tumor on my uterus. The tumor was very big, about the size of a melon. The doctor suggested it could be a fibroid, which is a benign growth, but because of its size she wanted me to have it removed immediately. So I agreed to have surgery right then in Macedonia.

When I woke up in my hospital room, my family members were extremely concerned, and I didn't understand why. Then the surgeon returned and gave me the life-changing news. He told me I had stage two uterine cancer, and that the cancer had spread to my ovaries. My cancer, leiomyosarcoma, is a very rare type of cancer affecting around six out of 1 million women. The doctors didn't know how quickly it spread, so they told me I must have one more surgery that evening to remove all of my reproductive organs and potentially save my life.

An emergency surgery

Even though I had all my family with me, I was shocked, confused, and lost. Did I only have a few days to live? I really couldn't explain what I was feeling because I was so afraid. I kept asking the surgeon if I had any other choices because I wanted to have a family. He said there were no other options for me. My cancer was estrogen-receptive, so stimulating my hormones, as pregnancy would do, might cause another cancer.

Fortunately the surgery was successful; doctors removed all the organs affected by the cancer. Luckily, I didn't have to undergo chemotherapy. And now, I'm five years in remission. I don't get regular checkups but I go for MRI scans and X-rays once a year.

One side effect I didn't expect was entering early surgical menopause at 35 because my ovaries were removed, and I was no longer producing estrogen on my own. I was really shocked; no one explained to me what I could expect in menopause and how to care for myself—like that I should take vitamin D to protect my bones, as my bone density started to decline. Now I'm very health conscious. I'm exercising a lot and I've changed my diet to manage the symptoms of menopause. The mood swings are really uncomfortable, so it's very hard.

Life after a serious misdiagnosis

I stayed in Macedonia for two months post-surgery, reflecting on what happened to me. It made me very angry. I wasn't taken seriously by my GP, and I realized that having a gynecologist examine me in the UK could have led to the discovery of my cancer earlier. Now I had to deal with all of the consequences. I was single and really worried that I couldn't have children of my own. But I was even more worried that if I met someone, would they accept me as an infertile woman? This fear of loneliness and rejection played in my mind for a long time.

After this harrowing experience, I started working to change how women's health operates in the UK. We don't have direct access to regular ob-gyn checkups under the National Health Service system, and I personally know many UK women (including close friends and colleagues) of various ages who have never been to an ob-gyn in their lifetime. Had I seen a gynecologist much sooner, my life could have been changed, but at the time I was simply doing as my doctors told me and didn't seek a second opinion. I began a campaign that would push for yearly checkups for all women in the UK, which would prevent late diagnoses like mine. Right now, my petition for change has over 37,000 signatures.

Despite it all, I'm now 41 and engaged. I met my fiancé six months after the surgery. When I met him I was really afraid to tell him about my operation, because I didn't know how he was going to take it. So I waited a month for the relationship to get serious before I told him about the situation with having kids—and he was fine with it. I also quit my job to become a life coach. I feel like I've been given a second chance to live, and I want to focus on what I have and not what I have lost, while also helping others. I don't want this to destroy my future.

If you have a story to share about being misdiagnosed, email us at misdiagnosed@health.com and join our Misdiagnosed Facebook community to talk to women who share the same struggle.