The journey to relieve endometriosis pain

Some women spend as much as a month of every year in so much pain they can do little more than endure it.

"We're talking about pain that's beyond 'I took two ibuprofen and went to work,'" said Dr. Kristin Riley. "We're talking about pain that keeps people from living their lives."

As chief of the Division of Minimally Invasive Gynecologic Surgery at Penn State Health Milton S. Hershey Medical Center, Riley hears stories about pain every day. When the stories involve endometriosis and chronic pelvic pain, it ranges from endurable to excruciating―from no big deal to circumstances where leaving the house or even getting out of bed isn't really an option.

For days. Every month. "The time adds up," Riley said.

And, in the case of endometriosis, no cure has been found. The condition, which occurs when a variety of tissue found in the uterus grows in ovaries, bowels, the bladder or elsewhere, affects roughly 190 million women around the world.

The good news is that health care professionals have become adept at diminishing the agony it causes. These days, if you're living with endometriosis or chronic pelvic pain, you have a wealth of options to choose from―including some geared to the very specific kind of pain that's yours.

"It's not a one-size-fits-all approach," Riley said. "It's very individualized."

Pills, creams, diets, holistic options―you name it, it's either on the market or someone is experimenting with it.

Riley discusses a few available options, including what's new for managing your pain.

First step: Talk to your doctor

Many women experience some pain during their period, and that doesn't necessarily mean there's a problem. But when it becomes debilitating, you should speak with your doctor.

Riley talks to new patients about their goals. What is the pain like? Where is it coming from? What does it keep you from doing?

"Some people have this cramping pain," Riley said. "Some people have sharp shooting nerve pain or muscle pain. Some people have something that starts out as bad period pain, and then it moves on to other organs—gastrointestinal pain, bladder pain, abdominal wall pain, back pain—or all of those things."

Often the first line of defense is medicine to decrease inflammation, Riley said, but a disease like endometriosis is so specific to each person, there's no catch-all pill.

Nor is there a simple diagnosis. There's no blood test. Right now, definitive diagnosis can only be made with a laparoscopic surgery. It can still take patients seven to 10 years to get a diagnosis due to the variety of symptoms and the method of diagnosis. Surgery to remove endometriosis can be helpful but isn't considered a cure.

That doesn't mean you have to suffer for years before you can do something about it. More options for treating your discomfort are emerging regularly.

"People want to treat their pain flare at home," Riley said. "They don't want to come into an emergency room or urgent care setting. They want to be able to have a list of therapies at home that might help them."

Downstream effects

The organs in your pelvis all function in a cavity about 5 inches wide. When one organ is inflamed, the problem doesn't have to travel to affect other organs. Women with endometriosis pain often discover bladder or bowel aches. They sometimes also find intercourse painful and discover infertility issues along the way.

Treating the pain often involves working with doctors other than a gynecologist. At Milton S. Hershey Medical Center, for example, doctors from various departments are part of a multidisciplinary team to treat the downstream effects that sometimes arise.

Those same organs affected by endometriosis can cause pain flares related to it. Riley sometimes sees patients who happened to eat too much of the wrong thing—but the pain they feel from a gastrointestinal problem causes their endometriosis discomfort to kick in.

That's why it's so important to have options, she said.

Traditional treatments

When considering what's right for you, doctors have a lot to think about. For example, say you're taking a drug to treat depression. Is there a slightly different antidepressant out there that might treat endometriosis pain at the same time? Also, your doctor might be less likely to prescribe a medication with sedating effects if someone is already taking a drug with sedative properties ― the patient might wind up feeling too drowsy and lethargic.

You might not choose one remedy. Rather, some drugs or procedures complement each other and add up to the best solution, Riley said.

• Hormonal therapies: Some patients find the use of hormone therapy to suppress their periods helpful for stemming endometriosis pain. Estrogen can slow the growth of the tissue outside of the uterus and control pain related to periods that can cause flares related to endometriosis.
• Anti-inflammatory and neuropathic pain medicines: Doctors often use drugs that specifically target the pain. Neuropathic pain medicines target the nerves that transmit pain to the brain. They're sometimes used for mental health purposes. Anti-inflammatory medicines lower swelling and reduce pain. Aspirin is an anti-inflammatory. Both neuropathic and anti-inflammatory medicines can be effective, but can come with side effects you'll need to know about. Milton S. Hershey Medical Center doctors avoid prescribing opioids as much as possible, "but we do have some patients that are treated with them for chronic pain," Riley said. Opioids can have intense side effects and are highly addictive. Furthermore, they deaden the mind "so you don't care about the pain," rather than reducing inflammation or targeting what's actually causing it.

Other remedies

• Cannabidiol (CBD): A variety of products—from creams to pills to oil droplets—marketed as pain relievers for people with endometriosis are popping up everywhere. Some patients and doctors say the medications are effective options. Most of them haven't been tested, Riley said. CBD seems to offer relief with relatively few side effects, Riley said. Researchers, including health care professionals at Penn State Health and Penn State College of Medicine, are studying their efficacy, but if you're looking for proof, not much is available yet. But CBD could be another option—and when it comes to endometriosis, the more options, the better, Riley said.
• Transcutaneous electrical nerve stimulation (TENS): Some patients find relief through a mild electrical current passed through leads attached to their muscles. The practice relaxes tissues and decreases pain, Riley said.
• Yoga, mindfulness meditation, diet: Doctors and patients are seeing some benefits from holistic, Eastern sources, Riley said. A 2023 National Institutes of Health study found that a yoga class specially geared for endometriosis patients showed the class helped decrease pain and stress. Mindfulness meditation involving breathing can also work to reduce pain, Riley said. Some patients find relief with dietary changes. Foods can trigger gastrointestinal reactions that can create pain flares related to endometriosis. "Some patients are cutting out dairy, red meat, processed food and foods high in sugar content," Riley said.