(Women's Health)

Tips To Aid In Coping With An Endometriosis Diagnosis

Remember: You’re not in this alone.

By Erin Kelly
Shutterstock/Daniel M Ernst

It’s common for women to experience the combination of cramps and pelvic pain associated with their period. But if you find that your pain symptoms are so severe at times that it’s difficult to go to work or get out of bed, you may be suffering from endometriosis.

Endometriosis — or “endo” as it’s commonly called — is an estrogen-dependent disease characterized by the presence of tissue resembling endometrium, or the lining of the uterus, outside the uterus. It currently affects approximately one in 10 women of reproductive age. While some women with endo are asymptomatic, the most common symptom is chronic pelvic pain, particularly before and during your period, and may occur during sex.

More than just discomfort, endo can impact your day-to-day activities. Severe endometriosis pain may prevent women from fully participating in work, home, and social activities. If you have been diagnosed with endo, you might ask: so, what now? What comes next after an endometriosis diagnosis?

1. Talk To Your Doctor To Educate Yourself

One of the most empowering things you can do regarding your endometriosis diagnosis is ask questions of your doctor to educate yourself on the disease, including how it presents and its progression. It may have taken years for your endometriosis to be diagnosed, which may leave you feeling frustrated and searching for answers. You’re not alone.

For Kellyn, a 28-year-old living with endometriosis pain, it took over a decade to get the right diagnosis. After 10 years of experiencing painful periods, several endometrial lesions were identified and removed from her uterus by laparoscopy.

“I was not told much after the laparoscopic procedure,” Kellyn said. “The doctor prescribed a pain medication and switched my birth control method. There were no discussions on what endometriosis was, what it meant for myself and my body, or how I would move forward after this.”

Arming yourself with information — such as the common signs and symptoms of endometriosis, who to see when you suspect you’re experiencing endometriosis (an OB-GYN or endometriosis specialist), and how physicians definitively diagnose the disease (laparoscopy) — can lead to different treatment options.

2. Consider Seeking Out A Support Group

It may be common for women with endometriosis to be dismissed by friends, family, and healthcare providers (HCPs) who believe their pain symptoms are “just cramps.” Understandably, this can be confusing, frustrating, and upsetting — especially when you’re experiencing chronic pelvic pain.

After moving to a new state, Kellyn’s initial diagnosis of endometriosis was questioned by her new doctor, as a second laparoscopy didn’t show any new major lesions. Later, another doctor claimed her pain was caused by chemical imbalances in her brain and prescribed her antidepressants. Both times, Kellyn felt defeated.

“I was so tired of being dismissed by doctors,” Kellyn said. “I had to start on a diagnosis journey all over again to prove that what I was going through was not normal.”

Seeking out a support group with other women who also experience endometriosis pain may help you feel less alone and heard. Plus, talking to others who have been through similar experiences may provide opportunities for accessing additional resources and outlets that will help you cope with your endometriosis pain.

3. Consider Treatment Options

Endometriosis pain can be different for everyone, which is why it’s important to be specific with your gynecologist — together, you and your OB/GYN can decide on the next steps for treating your endo pain. Tell your OB/GYN about your experiences with endo pain and how it has impacted you. The more your doctor knows, the better they’ll be able to help.

It’s also important to weigh your different options when seeking a treatment for endometriosis pain. One available treatment option for managing endometriosis associated pain is ORILISSA® (elagolix). ORILISSA is a hormone-free prescription pill for women 18 years and older that’s clinically proven to relieve moderate-to-severe endometriosis pain, including painful periods, pelvic pain in between periods, and pain with sex*. It works by lowering estrogen in the body. Less estrogen in the body means less fuel for painful endometriosis lesions.

ORILISSA may not be for everyone. Do not take ORILISSA if you are pregnant, have osteoporosis, severe liver disease, are taking medicines called organic anion transporting polypeptide (OATP) 1B1 inhibitors that are known or expected to significantly increase the blood levels of elagolix, the active ingredient in ORILISSA (ask your HCP if you are not sure if you are taking one of these medicines), or you have had a serious allergic reaction to ORILISSA or any of the ingredients in ORILISSA. See the end of the Medication Guide for a complete list of ingredients in ORILISSA. Ask your HCP if you are not sure.

*There are two different doses of ORILISSA: 150 mg (taken once a day) or 200 mg (taken twice a day). Only the 200 mg dose was proven to work for pain with sex.

Clinical studies show that women who took ORILISSA for three months reported less period pain and less pelvic pain between periods, compared to women taking a placebo. For Kellyn, it wasn’t until she found a new doctor who really listened and understood her symptoms, that she had a discussion about medical treatment options. This doctor spoke to her about ORILISSA as a potential treatment option. Kellyn noticed ORILISSA helped alleviate her endometriosis pain after 3 months of use and she was finally able to stop using her heating pad every day.

“I noticed improvements as ORILISSA helped relieve my endo pain. This progress was exciting as I was used to dealing with constant pain,” Kellyn said.

Whether you’ve been living with moderate to severe endometriosis pain for just a few months or several years, finding pain relief may be possible. Advocate for yourself and ask your doctor if ORILISSA may be the appropriate option for you.

4. Prioritize Rest & Relaxation

Kellyn’s endo symptoms have ranged from incredibly painful periods to constant non-menstrual pelvic pain. Coping with her chronic pelvic pain was extremely difficult.

“Endometriosis symptoms took a toll on me – I had to adjust many plans around my pain,” she explains. “Managing my endometriosis pain included resting and managing the symptoms as much as possible.”

It’s important to advocate for yourself when it comes to finding your own coping mechanisms, as Kellyn did. Listen to what your body needs and work with a healthcare provider to address your specific symptoms. Maybe that’s taking a mental health day or incorporating a relaxing podcast or audiobook into your routine to help you unwind. Or, maybe it’s taking a midday nap, if you are able. No matter what rest and relaxation means for you, make sure it’s something you prioritize.

The bottom line?

Kellyn’s experience is one example of finding relief from endometriosis pain — even after 10 years of physical discomfort and an incorrect diagnosis. Since finding a treatment option that worked for her, Kellyn reports she has reclaimed several aspects of her day-to-day activities, including spending more time with her family and friends due to her reduction in pain.

Although Kellyn still experiences intermittent symptoms, ORILISSA has reduced her endometriosis-related pain. “Now that I have a treatment plan that works, I am able to participate more in my day-to-day activities,” she says.

To learn more about ORILISSA and tips to help talk to your gynecologist, visit ORILISSA.com

USE:

ORILISSA® (elagolix) is a prescription medicine used to treat moderate to severe pain associated with endometriosis. It is not known if ORILISSA is safe and effective in children.

Important Safety Information:

What is the most Important Information I should know about ORILISSA?

ORILISSA may cause serious side effects, including:

  • Bone Loss (decreased Bone Mineral Density [BMD]) While you are taking ORILISSA, your estrogen levels will be low. This can lead to BMD loss. If you have bone loss on ORILISSA, your BMD may improve after stopping ORILISSA, but may not recover completely. It is unknown if these bone changes could increase your risk for broken bones as you age. For this reason, your healthcare provider (HCP) may limit the length of time you take ORILISSA. Your HCP may order a DXA scan to check your BMD.
  • Effects on Pregnancy Do not take ORILISSA if you are trying to become or are pregnant, as your risk for early pregnancy loss may increase. If you think you are pregnant, stop taking ORILISSA right away and call your HCP. ORILISSA may change your menstrual periods (irregular bleeding or spotting, a decrease in menstrual bleeding, or no bleeding at all), making it hard to know if you are pregnant. Watch for other signs of pregnancy, such as breast tenderness, weight gain, and nausea. ORILISSA does not prevent pregnancy. You will need to use effective hormone-free birth control (such as condoms or spermicide) while taking ORILISSA and for 28 days after stopping ORILISSA. Birth control pills that contain estrogen may make ORILISSA less effective. It is unknown how well ORILISSA works while on progestin-only birth control.

Do not take ORILISSA if you:

  • Are pregnant, have osteoporosis, have severe liver disease, are taking medicines called organic anion transporting polypeptide (OATP) 1B1 inhibitors that are known or expected to significantly increase the blood levels of elagolix, the active ingredient in ORILISSA (ask your HCP if you are not sure if you are taking one of these medicines), or have had a serious allergic reaction to ORILISSA or any of the ingredients in ORILISSA. See the end of the Medication Guide for a complete list of ingredients in ORILISSA. Ask your HCP if you are not sure.

What should I tell my HCP before taking ORILISSA?

Tell your HCP about all of your medical conditions, including if you:

  • Have or have had broken bones or other conditions that may cause bone problems; have or have had depression, mood problems, or suicidal thoughts or behavior; have liver problems; think you may be pregnant; or are breastfeeding or plan to be. It is unknown if ORILISSA passes into breast milk. Talk to your HCP about the best way to feed your baby if you take ORILISSA.

Tell your HCP about all of the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

Especially tell your HCP if you take birth control that contains hormones. Your HCP may advise you to change your method of birth control.

What are the possible side effects of ORILISSA?

ORILISSA can cause serious side effects including:

  • Suicidal thoughts, actions, or behavior, and worsening of mood. Call your HCP or get emergency medical help right away if you have any of these symptoms, especially if they are new, worse, or bother you: thoughts about suicide or dying, attempts to commit suicide, new or worse depression or anxiety, or other unusual changes in behavior or mood. You or your caregiver should pay attention to any changes, especially sudden changes in your mood, behaviors, thoughts, or feelings.
  • Abnormal liver tests. Call your HCP right away if you have any of these signs and symptoms of liver problems: yellowing of the skin or the whites of the eyes (jaundice), dark amber-colored urine, feeling tired, nausea and vomiting, generalized swelling, right upper stomach area pain, or bruising easily.

The most common side effects of ORILISSA include: hot flashes and night sweats, headache, nausea, difficulty sleeping, absence of periods, anxiety, joint pain, depression, and mood changes.

These are not all of the possible side effects of ORILISSA. This is the most important information to know about ORILISSA. For more information, talk to your HCP.

Take ORILISSA exactly as your HCP tells you. Tell your HCP if you have any side effect that bothers you or does not go away. Call your doctor for medical advice about side effects.

You are encouraged to report negative side effects of prescription drugs to the FDA.

Visit www.fda/gov.medwatch or call 1-800-FDA-1088.

If you are having difficulty paying for your medicine, AbbVie may be able to help. Visit AbbVie.com/myAbbVieAssist to learn more.

Please click for full Prescribing Information and Medication Guide.

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