When Should I Worry About a Change in Endometriosis Symptoms?

Editor's Note: Please see a health professional if you are worried about any changes or new symptoms you may be experiencing.

The other day I felt tired, bloated, and crampy. My gums felt sore. I kept getting reflux.

I was so exhausted I fell asleep in the middle of the day. That left me wondering if my period was about to start. Surely not, I thought. I’d had my last one only ten days prior.

I can’t say I was completely surprised when I went to pee a few days later and saw blood on the toilet paper. Though, this felt different than a period. The cramping and fatigue came on fast and felt more severe than usual.

I thought about going to the hospital, but the bleeding, pain, and serious fatigue stopped after about a day and a half.

I know endometriosis can cause spotting, abnormal uterine bleeding (AUB), and irregular periods. So can perimenopause and stress. As a 41-year-old woman with endo, I’m not surprised that my menstrual cycle has been a little wonky the past year.

How I handle new symptoms

I do worry when my symptoms change. Here’s how I keep my calm when that happens.

I watch for signs of an emergency

Severe pelvic pain has landed me in the emergency room before. The first time was when I was 17 and thought I had appendicitis.

The nurse told me it was probably just ovulation and to return if I got a fever. Later hospital trips, mostly in my 20s, revealed urinary and bladder problems.

Luckily, my symptoms have never been life-threatening that I know of. But I have a history of infections, endometriomas, and other ovarian cysts. Left untreated, these can be serious.

One time I languished in bed for three days with what I thought was the flu mixed with endo cramps. I blew off my symptoms even though I had a fever of 103, lots of pain, and I kept throwing up.

It turned out to be a serious kidney infection, and I needed antibiotics to improve.

I can’t rush to the hospital every time I feel bad. But I care about my health, so I’ve asked my doctors for clues about when I might need medical help immediately. They’ve told me to watch for signs of an infection or a ruptured ovarian cyst.

That includes symptoms such as:¹

• Severe belly or pelvic pain along with;
• Nausea or throwing up
• Diarrhea
• Fever
• Dizziness or vision changes
• Fast heartbeat
• Lots of pain when peeing
• New mid-back pain

I monitor my symptoms

I have a lot of endometriosis-related issues. They usually don’t surprise me.

It’s rare for me to have AUB. While I know endometriosis can cause spotting, that’s not what usually happens to me.

AUB can also be an early sign of endometrial cancer, which runs in my family. My doctor knows about my family history of cancer. She encourages me to update her on my symptoms, especially if they last longer than three months.

My new symptoms may be unrelated to endometriosis, but they include the following:

Abnormal uterine bleeding (AUB):

The American College of Obstetricians and Gynecologists (ACOG) says to bring up any abnormal bleeding with a doctor. ACOG defines AUB as a menstrual cycle that’s longer than 35 days or shorter than 21. Two of my last four have been 13 to 17 days.

Waves of fatigue:

I normally get pre-menstrual fatigue that can last days. This most recent tiredness came and went pretty fast.

I felt fine one minute and bone-tired the next. Sometimes my energy came back in a matter of hours. It was bizarre and had never happened like this before.

Sharp pelvic pain:

I’ll get sudden twinges in my pelvis's lower right or left side. I’ve had serious pains like this, but these are slightly different. They don’t happen with ovulation or my period.

They seem random, and they take my breath away. I can’t keep walking until they let up.

Abdominal spasms:

I’m having a lot of what’s called myokymia. That means that I have involuntary muscle spasms.

The most common kind is that annoying eyelid flutter that most people get. The ones I’m getting are all over my body, including the muscles in my lower abdomen. I can see them twitching under my belly button.

I Call My Doctor

When I search for causes of severe pelvic pain, AUB, and irregular menstrual cycles, many things come up. According to ACOG, that includes conditions I have or probably have, like endo, adenomyosis, and perimenopause.

Other causes include medical issues I’m not sure if I have, including:²

• Fibroids or polyps
• Thyroid issues
• Polycystic ovarian syndrome (PCOS)
• Endometrial cancer
• Endometrial intraepithelial neoplasia (EIN)
• Pelvic inflammatory disease

In short, I have no idea why my symptoms have changed in the past several months or if I should be worried about them. It’s something I’m going to talk to my primary doctor about.

I’ll bring these symptoms up with my new OB/GYN whenever her schedule opens up for an appointment.

I still don’t know what’s causing my symptoms. But my doctor told me to keep her updated, especially if my symptoms worsen.

Update: Since I wrote this post, I have had to cancel my OB/GYN appointment. My insurance didn’t cover being seen by her. My primary doctor ordered some bloodwork and a transvaginal ultrasound. Everything came back normal.