In July of 2018, I woke up with extreme pain in my midsection and lower abdomen. Though I consider myself to have high pain tolerance, I couldn’t stand the feeling in my body and curled up in a fetal position. I called my doctor immediately, and she told me to take an over the counter (OTC) pain reliever and lie down.
Five months passed and I continued to experience the pain while doing my best to manage it with OTC pain relievers. After talking with my doctor we decided to switch my birth control, but I continued to experience symptoms for another three months. The paralyzing pain I first experienced nearly half a year ago continued with a vengeance. There were times I even skipped classes and called out of work because the pelvic cramping left me bedridden and uncomfortable.
Eventually the pain became too much to bear, I scheduled a visit with my gynecologist, where she did an ultrasound. I tried to read the silence during the exams for clues as to what might be happening within me. Hearing nothing about the results, I was escorted to another examination room, where the gynecologist entered a few minutes later.
She explained to me that my ultrasound indicated I had endometrial tissue growing where it did not belong, otherwise known as endometriosis. In a professional matter, she began to explain all my options, including medication and surgery.
My experience transformed from a need to adjust my birth control to an endometriosis diagnosis and my future all in one appointment. I was 20.
Since being diagnosed with endometriosis, I’ve been vocal about my experience, especially knowing one in 10 women of reproductive age suffer from the disease. It took about a year of frequent gynecologist appointments, calls to the nurse and talking about my constant pelvic pain to be diagnosed, and I would never wish that upon anyone else.
Regardless of if you’re just starting to discuss your symptoms with your doctor or have been diagnosed with endo, I wanted to share some tips I’ve learned along my journey that I hope will help other women:
Monitor and Understand Your Symptoms
Had other family members of mine not also had endo, I never would have known what it was. Even still, all I knew was that it was a ‘painful period,’ when in actuality, endometriosis is an estrogen-dependent disease, which causes tissue that acts like the lining of your uterus – called the endometrium – to grow outside of your uterus, where it doesn’t belong. While every woman with endometriosis has a unique experience, common symptoms may include painful periods, pelvic pain in between periods and/or pain with sex.
Be Your Own Advocate
After my diagnosis, I remember sitting in my car full of tears and frustration, with questions racing in my head. Unfortunately, incidents like this can happen quite frequently, with women’s pain often dismissed as psychological or false, causing those who experience chronic illnesses to suffer in silence. For me, having a diagnosis felt validating – like my pain was finally understood. If you experience chronic pelvic pain especially around your period or pain during sex, be sure to have an open dialogue with your doctor at your next exam.
Work With Your Doctor To Develop a Treatment Plan That Works For You
Unfortunately, there is no cure for endometriosis, but treatment options are available for endometriosis pain. These include medical management and surgical procedures. I worked with my doctor to identify my treatment goals and pick a treatment that was right for me and I encourage others to do the same.
Treatment options for endometriosis pain you discuss with your doctor could include ORILISSA® (elagolix), a prescription medication for women 18 years and older for moderate to severe endometriosis pain. It’s been proven to reduce three common symptoms: painful periods, pelvic pain between periods and pain during sex.* It doesn’t include hormones. ORILISSA may not be for everyone. Do not use ORILISSA if you are or may be pregnant, have osteoporosis, severe liver disease, or take medicines such as cyclosporine or gemfibrozil.
ORILISSA works by lowering the amount of estrogen in the body. Less estrogen is less fuel for painful endometriosis lesions. ORILISSA is available in two doses.* Each dose dials estrogen down to a different level. Your doctor can determine the lowest effective dose for you based on your symptoms and treatment goals.
*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.
Be confident in what you’re feeling and communicate that to your doctor so they can identify a treatment plan that works for you — remember, everyone’s symptoms are different. In sharing my story, I hope to bring awareness to endo and help those who suffer from its painful symptoms. Together, let’s fight endometriosis pain!
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 under 18 years of age.
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. 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. Your healthcare provider (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 one week 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 or may be pregnant, have osteoporosis, have severe liver disease, or take medicines known as strong OATP1B1inhibitors, such as cyclosporine or gemfibrozil. If you are unsure if you are taking one of these medicines, ask your HCP.
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, have other conditions, or take medicines 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 pills. Your HCP may advise you to change the pills you take or 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 right away, or call 911 if an emergency, if you have any of these symptoms, especially if they are new, worse, or bother you: thoughts about suicide or dying, try 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 or 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 doctor or HCP.
Take ORILISSA exactly as your HCP tells you. Tell your HCP if you have any side effect that bothers you or that does not go away. Call your HCP 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.
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