Maria Thoms grew up thinking excruciating menstrual pain was normal. She assumed, like a lot of girls and women, that she just had “bad periods" with severe pelvic pain, fatigue and nausea. It was like getting the flu on a regular cycle.
The early solution for Maria was prescription birth control. It eased the symptoms but masked the root cause of her pain:
endometriosis. After graduating from college as registered nurse, Maria decided to get to know her body without birth control. The searing pain returned.
“Every period, I would have a day or two that I could not do much because of the pain," Maria says. “I would cancel plans. I just wanted to curl up in a ball and sleep."
Maria went to her doctor thinking she might have a hormonal imbalance, and even asked about endometriosis. She was given the option of getting back on birth control to bring the symptoms under control, but what she really wanted was to learn what was causing her periods to hurt so badly.
At the end of an overnight shift caring for patients in intensive care, Maria was about to become a patient herself. She was hit with the worst abdominal pain she ever felt in her life. It sent her straight to the emergency room.
A cyst had ruptured on her right ovary. The surgery to fix it finally revealed what had been causing her suffering all these years: Stage 4 endometriosis – the worst you can possibly get.
The endometriosis had spread across her abdomen, pelvis, and even up into her diaphragm. Part of her colon was adhered to the front of her bladder and uterus.
What causes endometriosis?
Sarah Bartlett, MD, a gynecologist with The Christ Hospital Physicians, says Maria's experience getting a delayed endometriosis diagnosis is all too common for women. It's estimated that about 10% of women are affected by endometriosis, but it's often underdiagnosed and undertreated.
“There's a long history of endometriosis not getting the attention it's due compared to something like asthma or diabetes that are easier to see or measure on a blood test," Dr. Bartlett says. “Endometriosis is harder. There's still not an exact test other than surgery. Even then, you could not see it and still have it."
Endometriosis happens when endometrial tissue that lines the uterus grows in other parts of the abdomen, like in the fallopian tubes or on the ovaries. When it's in the uterus, the tissue thickens, breaks down, and is shed as a normal part of the menstrual cycle.
When endometrial tissue grows
outside the uterus, the same process happens, except the broken-down tissue has nowhere to go. So, it can lead to the formation of cysts and scar tissue, the potential for other organs to stick together, much like Maria experienced.
Even with years of study, doctors still aren't sure what causes endometriosis, although
newer studies are looking at changes in DNA and genetic patterns. “There are different theories on how endometriosis develops on a cellular level, but we do know it happens long before the symptoms develop," Dr. Bartlett says.
Historically, endometriosis also used to be very difficult to treat. “For the longest time, there was one drug and one surgery, and neither was a really great option," Dr. Bartlett says. “Doctors weren't always excited pursuing a diagnosis because treatment options were so limited."
Pain and other symptoms with endometriosis
Endometriosis typically affects women of reproductive age up until their 40s. “In younger girls, it can be hard to diagnose until they've gotten into regular cycles, and we have a sense of what is normal for them," Dr. Bartlett says. “A little bit of it is pattern recognition. It takes time to develop inflammation, scarring, and some of the other things that cause symptoms."
Pain is the hallmark symptom of endometriosis, and that pain can feel very different from woman to woman. Some women may have very small patches of endometriosis and have extreme pain, while another woman with larger patches may feel very little pain and inflammation.
Endometriosis pain can be experienced in many ways, like:
- Painful menstrual cramps that get worse over time
- Pain during bowel movements or urination
- Pain in the intestines or lower abdomen
- Pain during or after sex.
In addition to pain, some women may have chronic nausea that comes and goes with their cycles, lack of energy, heavy periods, spotting between periods, and trouble getting pregnant.
“There are symptoms that would flag endometriosis as a likely diagnosis," Dr. Bartlett says. “When patients come in and say they have bad periods, we talk about what does 'bad' mean? It depends on how heavy and how painful they are. Do you take ibuprofen and they're manageable? Are you missing school or work?"
“Patients who tell me they have chronic nausea that comes and goes with their periods, they have pain with sex, they have pain with bowel movements; those are trigger words that suggest this is more than just a bad period," Dr. Bartlett says.
Other risk factors that may play a role in a woman developing endometriosis include:
- Family history, especially if her mother, sister, or aunt has endometriosis
- Short monthly cycles (less than 27 days)
- Heavy periods that last more than seven days
- Starting periods at an early age.
Diagnosing and treating endometriosis
Diagnosing endometriosis is not always easy. Gynecologists and women's health specialists no longer rely solely on exploratory surgery to make a diagnosis. It can also be based on a review of symptoms and risk factors with their patients.
“We can treat it medically as an ongoing inflammatory condition, and when patients improve – there's your answer," Dr. Bartlett says. “We still do surgery, but it's not always our first go-to. It's sometimes just a piece of this more complex puzzle."
For mild symptoms, anti-inflammatory pain medicines like ibuprofen and other NSAIDS may provide relief. Hormone therapies to prevent ovulation, like prescription birth control, can also reduce symptoms and slow the growth of endometriosis and further scarring.
As Dr. Bartlett notes, there is no blood test for endometriosis. It can't always be detected through imaging like an X-Ray or a CT scan. And the anatomy of the female reproductive system can even make diagnosis challenging because the uterus is so close to other potential sources of pelvic pain.
“The bladder is right in front of it, and the intestines are all around it," Dr. Bartlett says. “It's harder than it sounds to distinguish from those and rule out other potential causes of pain like kidney stones, irritable bowel, or an infection."
A same-day surgery procedure called a laparoscopy is generally the best way to confirm that a woman has endometriosis. The surgeon uses a small probe to look for inflammation and scarring within the abdomen.
There are still some limits to surgery. Endometriosis can be microscopic, meaning a surgeon might not be able to see it, and it could still cause symptoms and pain after the procedure.
If endometriosis is visibly present, the surgeon may remove it or treat it with a laser to prevent it from growing or spreading. In very severe cases of scarring and damage, your surgeon may discuss the need to remove the uterus, fallopian tubes, or ovaries.
Endometriosis and fertility
Women with endometriosis often worry about future difficulty getting pregnant, but there is hope. Endometriosis does not always cause infertility, especially when it's diagnosed and treated in its earliest stages.
“If someone has mild disease, you don't want to let it progress to a point where they're having significant issues," Dr. Bartlett says. “We're going to keep it on our radar to prevent infertility. If symptoms aren't getting better with medicines or if they desired fertility, those are situations where we would suggest surgery for more direct visualization."
Women with endometriosis can still become pregnant naturally, although they would have to come off birth control as a means of treatment. However, once pregnant, Dr. Bartlett says many of those endometriosis symptoms ease up.
“Younger women feel their best when they are either pregnant or breastfeeding because the hormone changes that happen during that time, it quiets endometriosis down," Dr. Bartlett says.
If a woman does not conceive after several months, her obstetrician or gynecologist may explore other options to improve fertility, like oral medications or potentially even in vitro fertilization.
After a woman passes reproductive age, symptoms of endometriosis generally go away altogether. “Women feel their best if we can get them to menopause," Dr. Bartlett says. “The scarring doesn't go away, but the activation, the inflammation, the growth of it stops at menopause."
Importance of women speaking up about endometriosis pain
Now that Maria has been diagnosed and treated, she is looking forward to getting back to her favorite activities like recreational sports and her newfound hobby of beekeeping. She's also sharing her experience to educate other women about the impact of endometriosis.
“It's important to advocate for yourself," Maria says. “You know your body. Everything you are feeling is valid."
It's a sentiment echoed by Dr. Bartlett, who encourages women to talk to their doctors about the impact of pelvic pain on the quality of their lives.
“Compared to when I started practicing 15 years ago, there are much better treatment options for endometriosis," Dr. Bartlett says. There's literature to support it's underdiagnosed, but a lot of gynecologists focus in on it now."
The Christ Hospital Health Network women's health team provides advanced treatment options for women with endometriosis.
Click here to find a women's health specialist or call our ezCare Concierge at 513-261-8007 to find a provider that's right for you.