iWhen Dawn Hauschild’s period showed up shortly after the birth of her second child, she expected it to be a normal adjustment to her pre-pregnancy state. Instead, the third-grade teacher’s period refused to go away, and with it came debilitating pain. The problem? Endometriosis, a chronic and painful disorder that allows uterine tissue to flourish in areas of the body other than the uterus.
It’s a lonely disease, Hauschild says.
“Your hormones are messed up, which messes with your entire body. You are in pain like the first-day period cramps every day, and people look at you like you are crazy,” she tells HealthyWay. “I talked to my best friend, who really didn’t understand what I was going through. My husband was my biggest support. But really and honestly, I felt ALONE.”
Hauschild is far from alone. An estimated 1 in 10 women in the world suffer from endometriosis, but it’s a condition that’s often misunderstood—in part because women don’t all show the same symptoms. For every woman like Hauschild, who was wracked with pain after her son’s arrival, there are women who show few or no symptoms at all.
Wondering whether you’re one of them? Here’s what the experts say.
What’s endometriosis, anyway?
Endometriosis can be (and often is) confused with endometrium, a term that refers to the mucous membrane lining the uterus. It’s an easy enough mistake to make when you look at the two words, but having one doesn’t mean you have the other.
Most cisgender women have endometrium. It’s the lining that will thicken during the menstrual cycle in anticipation of embryo implantation then shed during your period if you aren’t pregnant.
But for the millions of women with endometriosis, the endometrium doesn’t just show up in the uterus, says Sherry Ross, MD, an OB-GYN at Providence Saint John’s Health Center in Santa Monica, California. Endometrial implants, as they’re called, will show up in other parts of the body—from the ovaries to the fallopian tubes and beyond the reproductive system in the bowels, bladder, and other parts of the pelvis.
These implants become problematic because—just like the endometrium in the uterus—endometrial implants in other parts of the body respond to hormonal shifts and they slowly wreak havoc.
“With each period, the endometrial implants will bleed no matter where they are located in your body,” Ross explains. “As a result of the bleeding implant(s), scar tissue or ‘spiderwebs’ as I like to refer to them, develop in your pelvis, causing pain and all the other symptoms related to endometriosis.”
Those symptoms include everything from heavy menstrual bleeding and pelvic discomfort to painful intercourse and irregular periods.
It was both pain and bleeding that prompted Hauschild’s diagnosis. But although she had already gotten pregnant with one son, doctors said she might deal with yet another common sign of the disease: infertility. In fact this is how many women discover they have endometriosis.
Doctors still don’t know why a quarter of patients never show any of the more obvious side effects, but there’s a correlation that can’t be ignored. Anywhere from 25 to 50 percent of infertile women have endometriosis, and 30 to 50 percent of women with endometriosis are infertile. Although it is one of the most treatable causes of infertility, it also remains the least treated.
In the end, Hauschild was able to get pregnant a second time, albeit after several years of trying. But the second pregnancy and the hormones that flooded through her body seemed to make her condition worse. Still, she considers herself blessed.
“I was lucky,” Hauschild says. “I was able to have my boys. Some people are not able to have kids if they have it.”
Even those who do get pregnant, like Hauschild, often find that endometriosis worsens with each pregnancy. And the diagnosis process can be all the more frustrating, Ross says, because of the wide range of different symptoms each patient might experience.
“Since symptoms vary between women, so does the time it takes to make the diagnosis,” Ross explains. “Diagnosis can be tricky even for the specialists.”
What endometriosis is not
Whether you have endometriosis or you’re facing a possible diagnosis, there’s one thing that’s certain: It’s not your fault.
Although researchers have yet to pinpoint any one particular cause of the condition, it’s been verified that endometriosis is not something women can control. It’s not sexually transmitted, nor is it something that you can “bring on” by any one behavior or action.
Studies have ruled out a link between using the IUD for birth control and developing endometriosis, as well as the chance that previous sexually transmitted diseases might increase your chances of encountering the disease. What’s more, endometriosis and polycystic ovary syndrome (PCOS) may both be reproductive in nature and occur in about the same percentage of the population, but the two conditions are not linked. Having one won’t increase your chances of having the other.
Most of the risk factors are things you’re born with, says Gerardo Bustillo, MD, an OB-GYN at MemorialCare Orange Coast Medical Center in Fountain Valley, California. They include:
- Never having been pregnant, early onset of menses, late menopause
- Being taller and/or thinner than most women
- Having a family history of endometriosis—having a mother, sister, or daughter with endometriosis raises your risk about six-fold
- Being Caucasian or Asian
- Having red hair, freckles, sensitivity to the sun, and pre-cancerous skin moles
On the other hand, a period that doesn’t begin until late adolescence correlates to a lower risk, as does being black or Hispanic.
None of those things are changeable. But Ross says there are some things that may help to lower your risk if you’re already in a higher-risk group.
“Many believe that keeping your estrogen levels low can help reduce your risk,” she notes. “The birth control pill, regular exercise, [and] avoiding excessive alcohol and caffeine all help keep estrogen levels low in your body and help reduce your risk.”
Getting diagnosed with endometriosis
If you’ve been hammered by painful periods or struggled with infertility, an endometriosis diagnosis won’t be automatic…and you may have to fight for it, even at your physician’s office. Some studies have found that women can wait for as long as 11 years for a proper diagnosis.
It’s not just that the disease presents differently from woman to woman. Many practitioners are ill equipped to handle an endometriosis diagnosis. According to statistics from the American College of Obstetricians and Gynecologists (ACOG):
63% of general practitioners [GPs] indicated they felt ill at ease in the diagnosis and follow-up of patients with endometriosis. One-half could not cite three main symptoms of the disease out of dysmenorrhea, dyspareunia, chronic pelvic pain, and infertility.
In the ACOG survey, just 38 percent of GPs indicated that they perform a gynecological examination for suspected endometriosis; 28 percent recommended magnetic resonance imaging (MRI) scans to confirm the diagnosis.
Your best bet if you think you may have endometriosis is to work with an OB-GYN. If endometriosis is suspected, your doctor will likely call for diagnostic laparoscopy first. This minimally invasive outpatient surgery makes use of a tiny incision to give doctors a look inside the pelvis, where they’ll keep an eye out for endometriosis implants and/or scar tissue (some of which can be treated during the procedure).
Diagnosis can come at any time. While many women are in their 20s or even 30s at diagnosis, Jordan Davidson recalls being diagnosed at just 12 years old. Davidson, who is the founder of Endo Warriors, an online support group for endometriosis patients, is on the younger end of the spectrum, but she’s far from alone. Girls as young as 11 have been diagnosed with endometriosis, and estimates put the number of endometriosis patients at 1 in 10 women between the ages of 15 and 49.
So what does endometriosis mean for your overall health?
The results are a mixed bag. While endometriosis is exceedingly painful for some, others never notice symptoms and can live a pretty normal life. Even the number of endometriosis implants in the body does not necessarily mean you will have pain. Some women have very few implants with significant pain. Others have a lot…with little pain.
And while it may be correlation rather than causation, Ross says it bears noting that endometriosis is often associated with other health problems such as asthma, allergies, multiple sclerosis, hypothyroidism, chronic fatigue syndrome, fibromyalgia, and ovarian and breast cancer. A diagnosis with one won’t necessarily mean you’ll be diagnosed with the others, but your risks may be higher.
The goal with any treatment is to reduce pelvic pain with as little intervention as possible, says Rachel Cannon, MD, an OB-GYN and instructor of obstetrics and gynecology at Boston University. Typically that means starting with medication such as birth control pills. Because the implants respond to hormones, similarly to the way the uterine lining does, the pill’s regulation of the body’s hormones can help reduce the reaction and the pain.
Of course, if you’re trying to become pregnant, birth control pills are not helpful, as they will prevent conception. The laproscopic procedure used in diagnosis may help clear up enough of the endometriosis to allow your body to become pregnant.
If a patient is in pain but isn’t interested in conception and has no pelvic masses, Bustillo says that medical therapy will likely include non-steroidal anti-inflammatory drugs, such as ibuprofen or naproxen, and/or oral contraceptives.
If pain is not well controlled with anti-inflammatory medication and/or oral contraceptives, the next step is usually gonadotropin-releasing hormone (GnRH) agonist drugs (such as Lupron).
“These drugs cause a temporary menopause-like state by sharply lowering estrogen levels in the body,” Bustillo says. “As a result, the endometriosis implants shrink and cause less pain.”
So why not start with GnRH agonists? There are drawbacks; they produce menopausal side effects and can result in bone loss.
Unfortunately, endometriosis has a high rate of recurrence. In patients treated surgically, it’s as high as 40 percent at 10-year follow-up, and about 20 percent of patients will need to undergo additional surgery within two years. Because of this, some may opt for a hysterectomy down the road, including removal of both ovaries.
Hysterectomy is a complicated decision, Cannon says, because it both eliminates a woman’s ability to become pregnant and has menopausal side effects. Nor is it always a simple cure. There may still be endometriosis in the body that can cause issues.
Making sense of all of your options will require your doctor’s advice, but Jordan Davidson likes to think it’s other sufferers who can help you with the emotional component. It’s why she started Endo Warriors along with fellow endometriosis sufferer Jill Fuersich.
“Growing up, I knew very few people with the condition. When I moved to New York City for college, I thought ‘Great, if there are millions of women with endometriosis in the U.S., surely there must be thousands living with the condition in the nation’s biggest city.’ Except I couldn’t find a support group,” she recalls.
Like Hauschild, she felt alone, until she met Fuersich and began to put together the pieces that now make up Endo Warriors, which offers in-person and online support. There is a private Facebook group for those living with the condition and a public page with general resources for people with endometriosis. They also provide resources for the loved ones of people with the condition. The group has regular meetings in New York City and is in the process of adding more services…and it’s open to anyone with endometriosis questions.
Others with endometriosis can find support from groups like Nancy’s Nook or Endometropolis. Resolve, a national non-profit organization for folks dealing with infertility, also has resources for those whose infertility is linked to endometriosis.
In the end, the most important thing is to speak up, Ross says.
“Women are becoming more aware of their bodies and have more access to medical information. Many women already suspect the diagnosis of endometriosis after doing their own research online before going to see their healthcare provider,” she notes.
“This is a positive step in women becoming their own patient advocate. It is incredibly important to find a healthcare provider who is comfortable and competent in treating endometriosis and who can guide your treatment based on your personal needs.”