Jillian Amodio got her period at 14. When she told her pediatrician that she was experiencing pain so severe she could hardly walk and was frequently vomiting during menstruation, the doctor told her that it might take a few years for her body to “adjust” to having a period. Two years later, her doctor suggested she may just have “low-pain tolerance.” Finally, at 19, Amodio explains, knowing her mother had also had endometriosis, she insisted that her OB/GYN do exploratory surgery to check. The surgeon found endometrial tissue outside of her uterus and diagnosed her. A decade later, Amodio has tried almost every common treatment for endometriosis, resulting in a whirlwind of side effects ranging from depression to paranoia while her pain continued.
What Is Endometriosis?
Endometriosis is a condition in which tissue similar to endometrial tissue, the tissue that normally lines the uterus, ends up coating other organs. Throughout your cycle, the endometrial tissue thickens in your uterus and if you don’t become pregnant, it sheds during menstruation. When similar tissue migrates outside of your uterus, it still responds to the hormonal cues that guide this cycle, causing thickening tissue and bleeding outside the organs, along with scarring, cysts, inflammation and pain.
One reason that endometriosis can be difficult to diagnose is that this tissue can exist just about anywhere in the body, meaning that people with the condition may experience different types of pain. For example, Joe Connolly who founded Visana Health, an app to help women manage endometriosis treatment. He had several women in his family suffer from the disease. “If you have endometriosis on your bladder, you can have bladder pain and urgency with regards to urinating,”he explains. “If you have endometriosis on your bowel, you can have a lot of pain with defecation while you are menstruating. If you have endometriosis on different nerves, you can actually have radiating leg pain during menstruation.”
It can take doctors two to five years to diagnose a woman with endometriosis. Midori Matsuo, bachelor of medicine bachelor of surgery (MBBS) and a pain management doctor, explains that endometriosis is far more than period pain. It’s a multisystemic disease, but a “lack of research limits treatment options for the pain, which often leads patients to repeat surgeries.” She adds that it can be especially difficult to diagnose in the earlier stages when people have fewer symptoms.
The most common symptom is moderate to severe pain during menstruation, but other symptoms include:
- Painful urination or defecation during menstruation
- Pain during sex
- Heavy or abnormal bleeding during menstruation
- Diarrhea, constipation or nausea
Endometriosis often runs in families. Additionally, some scientists believe endocrine disrupting chemicals may play a role in the disease’s development.
Diet and Life Strategies to Manage Endometriosis
Anti-Inflammatory and Anti-Estrogenic Diets Can Help Ease Symptoms
Endometriosis is often characterized by excess estrogen and excess inflammation. Certain diets may help you lower the levels of both. MedShadow offers a free anti-inflammatory diet guide, and this article features more anti-inflammatory recipes from Instagram. Both Amber Bibelheimer and Amodio say they follow an anti-inflammatory diet that has helped control their symptoms. However, Bibelheimer says that while “removing major inflammatory foods like gluten, alcohol and dairy,” for a year helped her considerably, the diet was difficult to follow and led to stress and binge-eating. Over time, she was able to find a more balanced and sustainable approach to dieting.
After following her new diet, taking supplements advertised to help balance hormones and getting acupuncture, Amodio says it’s been two years since she’s had any flare-ups or “even a remote indication that endometriosis was present.”
Less is understood about foods that lower estrogen, but some foods, like cabbage, brussels sprouts, broccoli and cardamom may reduce the effects of estrogen on your body and may limit pain. Foods with Vitamin B6, such as peanuts, bananas, soybeans and oats, and those with omega-3 fatty acids, such as salmon, anchovies and chia seeds, have also shown promise.
Exercise Can Help Treat Pain and May Reduce Other Symptoms
Research shows that for some people, exercise can reduce pain associated with menstruation. Connolly recommends low-impact exercise, such as walking, yoga and swimming. In the specific case of menstrual pain associated with endometriosis, it’s not entirely clear how much exercise may help, however, a 2017 review paper suggests that because it’s known to reduce inflammation, it may help lessen pain as well as other symptoms associated with the disorder. Mastuo adds that, “Regular physical exercise causes a decrease in estrogens being associated with a reduction in the risk of endometriosis.”
Acupuncture is an important part of Amodio’s strategy to manage her endometriosis symptoms. Of several complementary interventions for endometriosis in one review article, including acupuncture, exercise, electrotherapy and yoga, acupuncture was the only one that demonstrated a significant reduction in pain over a placebo.
Pelvic Floor Physical Therapy
A small, randomized trial of 29 women suggested that pelvic floor physical therapy can reduce pelvic pain as well as pain associated with sex. This type of physical therapy may include the therapist manipulating your vaginal or rectal muscles with a finger. It can also include relaxation exercises and biofeedback.
Cognitive Behavioral Therapy
Little is known about the effects of cognitive behavioral therapy (CBT) on pain specifically associated with endometriosis, however studies have shown that the practice can lead to small, but sustained improvements in chronic pain in general.
When dealing with menstrual pain it’s common to start with non-steroidal anti-inflammatory (NSAIDS) drugs available over the counter, like ibuprofen and naproxen. However, a Cochrane review, a systematic review of the existing body of research on particular treatments or diseases published in the Cochrane Library, suggests we still don’t know how well these drugs work for endometriosis pain.
- Difficulty concentrating
On rare occasions or after prolonged use, you may experience:
- High blood pressure
- Swelling in the face, hands, lower legs, feet or ankles
- Bloody or cloudy urine
- Blurry vision
- Difficulty breathing
- Ringing in the ears
- Vomiting blood
- Weakness in one side of the body
- Light sensitivity
- Extremely painful headache or back pain
- Chest pain
- Fast heartbeat
Combined Oral Contraceptives
Once you are diagnosed with endometriosis, the next treatment you’ll likely be prescribed is birth control pills. These drugs may help lessen your pain during menstruation and throughout the month. Most oral contraceptives are made of a combination of estrogen and progesterone, but they’re not all the same. Each brand contains different amounts of each of these hormones and certain brands may be better for specific symptoms and for limiting side effects. Even though they contain estrogen, the pills work by preventing ovulation, which can lead to lighter periods and fewer symptoms.
- Fluid retention
- Blood clotting
- Mood changes
- Increased risk of heart attack or stroke (especially for those who smoke or are over 35 years old)
- Breast tenderness
For Amodio, extreme mood changes were a side effect of oral contraceptives.. She took the contraceptive Yaz, which she says did regulate her period, but didn’t help with the pain and caused “anxiety, depression, paranoia…I truly felt like somebody was always around the corner, like something bad was always around the corner or something was going to happen.”
Progesterone-Only Birth Control
If combination oral contraceptives fail to provide you sufficient relief from endometriosis symptoms, your physician may prescribe a progesterone-only treatment, such as a minipill. ,The treatment is available as a pill or an injection and may lighten or eliminate your period.
Side effects include:
- Breast tenderness
Sometimes physicians will recommend an intrauterine device (IUD) that delivers progestin, such as Mirena, Skyla or Liletta. In addition to the side effects above, there is the rare possibility that the device could break, perforating the uterus, and will need to be removed.
The next step, for some, is to take drugs that induce menopause using long‐term gonadotropin‐releasing hormone (GnRH) agonist therapy, which blocks the production of estrogen. The most common form is a drug called Lupron.
The experience is temporary, if you stop taking the drugs, you’ll start menstruating again. Connolly says there’s a newer drug Orilissa (elagolix), which may cause fewer side effects. “Lupron is like an on-off switch, and Orilissa is more like a dial,” he explains. The newer drug “allows estrogen to be fine-tuned so you can take different doses and find the level of side effects that are acceptable or unacceptable to you.
If you use one of these treatments, the side effects are likely to mimic the symptoms of menopause such as:
- Hot flashes
- Decreased libido
- Mood changes
- Reduced bone density
Amodio says that agreeing to go on Lupron for a year was “the worst decision I’ve ever made.” She had to do physical therapy after the injection hit a nerve and led to sciatica. Instead of improving the mood swings she experienced on contraceptive pills, she says this treatment “threw the mood swings into overdrive.”
To mitigate the risk of fractures due to reduced bone density, Amodio was told to take calcium supplements while she was on Lupron. She says the supplements were likely responsible for the eight kidney stones she formed while using the drug. The one positive, she says, is that the drug gave her body some time to heal. After she came off of it, she was able to sustain a pregnancy.
Physicians use surgery both to diagnose and to treat endometriosis (though there is a growing faction of doctors who prefer ultrasounds for diagnosis). In terms of treatment, since endometrial symptoms are caused by uterine tissue growing outside the uterus, during a laparoscopic surgery, a surgeon can scrape some of that excess tissue off of your other organs, which may lessen your painful symptoms. Like any surgery, the process comes with inherent risks, such as bleeding or complications from anesthesia. Bibelheimer says it took her three weeks to recover from her laparoscopic surgery, but afterward she had less pain and was able to get pregnant within a year.
In other cases, women may have hysterectomies, surgeries to remove the uterus. In addition to removing the organ that houses most endometrial tissue, the surgery instigates menopause, dropping your estrogen levels and preventing any further ovulation.
Fertility, Pregnancy and Endometriosis
Since pregnancy suppresses ovulation, it often reduces endometriosis symptoms. “Some doctors will even joke that the best cure for endometriosis is pregnancy,” says Amodio. “But I don’t want to have 10 children.”
However, endometriosis can make it difficult for a woman to get pregnant and may contribute to a higher risk pregnancy if you do. There aren’t many treatments to help fertility, though in vitro fertilization can work, particularly in milder cases of endometriosis.
Surgery or induced menopause prior to conception may help give your body some time to heal before pregnancy, though current data is inconclusive.
Endometriosis can make it difficult to get pregnant. Some recommend that surgery to remove the endometrial tissues can help. Bibelheimer says that not only did the surgery reduce her pain, but she was able to get pregnant a year later.
The most important thing you can do, says Amodio, is advocate for yourself. On average, it can take more than four years for a woman with symptoms to be diagnosed with endometriosis.
“You know your body better than anyone else,” she says. “And when you know something’s wrong, you have to push for answers.”