Ellen was diagnosed with stage 3C grade 3 endometrial cancer.

She started noticing symptoms similar to a urinary tract infection or a yeast infection. After being diagnosed and treated for recurrent UTIs, her symptoms got worse.

A transvaginal ultrasound revealed that her uterine lining was thick, so her gynecologist recommended doing a D&C. After the procedure, they found out she had endometrial cancer.

She shares how she experienced medical gaslighting, going back and forth with different doctors before getting to the root of her symptoms, and the importance of listening to your body and advocating for yourself.

In addition to Ellen’s narrative, The Patient Story offers a diverse collection of patient stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.

Seeing a gynecologist

They said I had an infection and gave me some medicine. Then they said I had a yeast infection and gave me medicine for that.

I saw him a few times and I said, “That’s not helping me get any better so obviously that’s not it.” I started feeling maybe it was urine and not vaginal discharge. I thought, That’s probably what it is. I’m having all these UTIs.

Through 2021, UTIs and discharge got worse. Through all of this, I never saw blood. It was a clear discharge so it didn’t connect with me that it might be vaginal. I was post-menopausal for 13 years already. I thought all of that was behind me. I didn’t even think about that.

At that time, my mother was sick and she moved in with me. She was in her late 80s. She was incontinent. I thought, This is what’s happening to me. What I thought was UTI didn’t turn out to be. It turned out to be the cancer getting worse.

My family practitioner said, “It’s time we go to a urologist.”

Follow-up appointment with the gynecologist

I went straight to the car, called the gynecologist, and said, “I need another appointment. This is vaginal. We got to do something.” I saw him within two weeks.

He scheduled a transvaginal ultrasound and said, “Your lining is really thick. Let’s put you on some progesterone.” I said, “No, I’m not taking progesterone. I told you many years ago I was not taking that anymore.” He said, “Let’s do a D&C then put in a Mirena IUD,” which we had done in 2008 and had worked great.

We did that the [following] week. When the D&C was over, he came out and told my husband and then told me later, “We’ll talk when the pathology report comes back. I don’t like the looks of it.”

Reaction to the diagnosis

[When] my gynecologist said we’re going to do a D&C, it was a frozen-in-time moment. I said, “Thank you because I’m telling you something is very wrong with me.”

I don’t need negativity in my life. I tried to let that go because I can’t fight the fight being bitter or upset about the past.

I know that doctors are in a big hurry and they have a whole lot to deal with. I wish all medical people would not look at someone’s size and assume that if they lose weight, their problems would go away and not assume that you don’t know what’s going on in your body.

I knew something was wrong. I don’t know how to make people listen to your concerns. Even if you go through a whole bunch of tests and it comes back that it’s nothing, then great.

Had somebody listened to me a little bit earlier, we could have gotten this cancer while I was still in stage 1. Now, I’m in stage 3. Maybe I haven’t processed it yet.

Side effects from chemotherapy

I didn’t even know chemo dread was a thing. You have such a bad feeling the day of chemo or when you even would think about a chemo treatment coming up.

I got really nauseous, but there is good nausea medicine.

My hair fell out. I got proactive about that a little bit. I started cutting it shorter and then as it started coming out, I shaved it off because I could not stand my hair being on everything.

The first one made me really sick. The steroid made me feel bad. But for the last five cycles, the steroid kept me feeling good for the three days that I took the steroid. The fourth and fifth days were really bad. Then I started feeling a little bit better.

Before the third or fourth cycle, I told the nurse navigator, “I’m so tired.” She said, “Usually the people who stay as close to their regular schedule do the best.” I said, “I stay ‘til I work all day, get home, and get supper. I’m worn out.”

I missed a few work days every cycle. As the cycles progressed, the harder it was to work. I would be so tired.

I’d be asleep early and sleep for a long time. I remember telling my doctor, “Sometimes I go to bed at 6 o’clock at night and I sleep ‘til 6 o’clock in the morning.” She said, “You’re tired. That’s not strange. It’s not abnormal to need that much sleep.”

Words of advice

See a gynecologist

If you’re a woman, you need a gynecologist. Ten years post-menopause, I thought, I don’t need a gynecologist anymore. I’m not having a period. I have had zero issues. I can just let my family doctor do that. I made that decision and that was a bad, bad decision. I will have to [deal with] the repercussions of it for the rest of my life because I let it go.

You can’t rewrite history. It may not have made any difference because they may have just let that go. Women should not ignore their feminine health, whether that’s a mammogram or a pap smear. If something’s just not right, we need to have a doctor who we’re seeing regularly, who knows us.

Listen to your body

I never really thought it wasn’t a UTI until the urologist said, “You have not been having any UTIs. Your bladder does not show that.”

Every time, the culture grew something different. I think a gynecologist would have put all of the pieces together.

They removed my cervix. I still need a gynecologist because things can happen in your vagina. You can have cancer there. You still need somebody checking all these places. Everybody does.

Advocate for yourself

The main thing is to be an advocate for yourself. Doctors have a lot of patients. You have to be able to say, “No, wait a minute. This is wrong. Something is not right here. You’ve got to look at me.”

One time long ago, I had an allergic reaction to medicine. I made an appointment because I was itching and they messed up my appointment time. I lost it in the doctor’s office. I said, “No, I can’t stand this itching one more day. You’ve got to do something.” They got me straight into the doctor.

If you push enough, you’re going to get in and get somebody to listen to you. You just have to keep pushing. Stand up for yourself.