For those who may not know, endometriosis happens when tissue similar to the lining of the uterus (womb) grows outside of the uterus, where it doesn’t belong. It’s a common health problem for women, according to the Office on Women’s Health, with an estimated 1 in 10 women of reproductive age in the U.S. diagnosed with the disease. These endometriosis growths (or lesions) can be extremely painful, and at times debilitating.
There is no cure for endometriosis, and despite various treatment options, it can still be difficult to find a treatment plan that works, especially due to the normalization of endometriosis pain and the symptoms associated with it. But this doesn’t have to be the case. In honor of Pelvic Pain Awareness Month this May, we’re sharing the stories of two women who have managed to find solutions that work for them. It wasn’t an easy process, but with their persistence and commitment to finding what works best for them, they were able to achieve the right treatment plans for their specific needs. Read below for more information on how they were able to start to build a more individualized treatment plan and get care to better address their pain.
Find the right doctor
Taylor M. saw four doctors before she was diagnosed with endometriosis. “It took me getting to a specialist before someone took my thoughts and complaints seriously,” says Taylor M.
There’s always new and upcoming treatments that specialists are trying for endometriosis, so you’re going to need somebody who’s really in that field to be able to push for some of those things. Otherwise, you get people who say ‘just take common over-the-counter pain medication’ or ‘you don’t need this, you don’t need surgery, you don’t need different medications,’ but if it’s hindering your day-to-day activities, you do need it and it is a necessity. So, finding the right doctor I think is really key.”
Advocate for yourself
Getting a diagnosis is an important first step in the treatment journey because it means someone is listening to you. Conversely, sometimes women aren’t listened to when it comes to issues surrounding their bodies, and to that, Kellyn P. says it’s okay to speak up and fight for your health, even if that means firing your doctor. She, too, has been through rounds of doctors but after finding one that was able to work with her, she was able to find the right treatment plan.
“I’m on my fifth gynecologist and she has been absolutely amazing. She did my last laparoscopy and burned off all of the new lesions, burned out all of the scar tissue, diagnosed me with stage three endometriosis, and put me on Orilissa® (elagolix) and started me on pelvic floor physical therapy,” says Kellyn P.
Orilissa is a prescription medication made for women 18-years-old and older with moderate to severe endometriosis pain. Orilissa is a daily pill available in two doses and as of October 2020, 60,000 women and counting have been prescribed. Orilissa may not be for everyone. Do not use Orilissa if you are pregnant, have osteoporosis or severe liver disease, take 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), or have had a serious allergic reaction to Orilissa or any of the ingredients in Orilissa. Please see below for Indication and Important Safety Information. Please see the Full Prescribing Information, including the Medication Guide for more information.
“I don’t feel like a lot of people know that it’s okay to fire your doctor, but you know your body. Your doctor knows a textbook. If you don’t feel like you’re being listened to, it’s perfectly fine to switch doctors,” says Kellyn P. “Yeah, it’s hard to start over and re-explain everything to someone else, but a doctor that is going to listen to you and be willing to help you is way different than sitting there talking to a doctor while you’re not being listened to whatsoever.”
Recognize it’s not normal
Because endometriosis is an invisible illness, it can be difficult for others to see it as something serious. “It makes periods incredibly uncomfortable and painful so I talk about it a lot so people who are also experiencing this can realize it’s not normal to feel like that every month,” says Taylor M. “It is difficult to try to go about your life and not have to call off work sometimes because you are in so much pain.”
Acknowledging it doesn’t have to be this way was a breakthrough for Taylor M. “It’s not normal to have this pain so if somebody is telling you it’s normal, you need to see a different doctor. You know something is wrong and if you have people continuing to say, ‘This is normal, it’s fine,’ it’s time to see somebody else and see somebody who will take you seriously.”
While Taylor M. has not personally tried all treatment options, including Orilissa, both she and Kellyn P. encourage anyone suffering from endometriosis-associated pain to discuss all treatment options with their healthcare provider.
Always look at treatment plans
Kellyn P. says that once you have a good treatment plan, a good doctor and a great support system, it’s really easy to manage and to move forward, but to find a doctor that’s right doesn’t happen overnight.
“It’s a journey and a lot of people right now are just managing on pain medicine,” she says. “Orilissa has helped me tremendously, but a lot of people that have suffered from endometriosis pain for years have no idea that this medication exists. So, do your research, look at the different treatment plans, talk to your doctor about Orilissa and just keep advocating for your health and don’t become complacent because endometriosis is a chronic and typically progressive disease.”
Speak up, connect with others and help raise awareness
Since not a lot of people know about endometriosis, Taylor M. has used her platform to speak up about the condition. “I talk about it a lot,” she says. “I talk about it on my social media channels because it’s really hard to get [endometriosis] diagnosed, so I talk about my symptoms.”
Kellyn P. adds that she also wants people to know that they’re not alone and that there are resources available. “There’s a community of us,” she says. To anyone newly diagnosed, you’re not alone, even though endometriosis can feel very, very isolating.” To learn more about endometriosis, Orilissa and hear from others, visit Orilissa.com.
This article was created by SheKnows and sponsored in collaboration with AbbVie.