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According to Fertility and Sterility, endometriosis affects 1 in 10 women. In addition, 25% to 50% of women who deal specifically with an infertility diagnosis have endometriosis. Unfortunately, symptoms are often missed or misdiagnosed completely.
Making matters more complicated, endometriosis is sometimes mistaken for other conditions, such as pelvic inflammatory disease (PID) or ovarian cysts. It may also be confused with irritable bowel syndrome (IBS), which causes diarrhea, constipation, and abdominal cramping. In other cases, 20–25% of endometriosis patients are completely asymptomatic, also known as “silent endometriosis.”
In recent years, several female celebrities such as Lena Dunham, Julianne Hough, Padma Lakshmi, Daisy Ridley, Tia Mowry-Hardrict, and Halsey have all opened up about their endometriosis diagnosis in hopes of spreading awareness around this disease, since diagnosing it can take, on average, 7.5 years. Endometriosis sufferer Denie Shae Martinez explains that despite a lingering suspicion that something was ‘off,’ “[her] journey to diagnosis was not easy or direct.”
It’s time to recognize that we do have a lot of control over the process, but it requires us to keep our hands on the steering wheel, do our research, and be ready to ask for what we want, which may not be easy for everyone.
Now let’s familiarize ourselves with the signs and symptoms of endometriosis so that we can better advocate for ourselves if we feel like something may be amiss.
What is endometriosis?
Endometriosis is a condition where tissue similar, but not identical, to the lining of the uterus is found elsewhere in the body. This tissue may be found throughout the entire pelvis area, including the fallopian tubes, ovaries, bowels, bladder, and even in some cases, the appendix, causing inflammation and pain.
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Symptoms can vary from patient to patient, but common symptoms are severe menstrual cramps, painful intercourse, heavy or irregular periods, and potential infertility. The severity of endometriosis and the symptoms can vary from patient to patient, so endometriosis may or may not impact a woman’s quality of life or fertility.
For Denie Shae, her endometriosis symptoms included heavy, painful periods and pain during intercourse. Still, after numerous pelvic ultrasounds, CTs, and MRIs, there were no remarkable findings. She explains, “I felt defeated seeking competent care for a very real and debilitating disease and finding only yet another doctor ready to minimize, discredit, or mistreat me rather than to admit they were bewildered and didn't know how to help.”
Does endometriosis impact fertility?
Each case of endometriosis is unique when it comes to the severity of a person’s symptoms and its impact on their fertility. The problem is: that endometriosis can be challenging to diagnose, as a definitive diagnosis can only be made through laparoscopic surgery. That’s why if you have been trying to get pregnant for over a year, it may be time to have a conversation with your OB/GYN or seek the help of a fertility specialist to discuss your options. That time frame shortens to six months if you’re over the age of 35, if you already know you have endometriosis, or if you have experienced recurrent pregnancy loss.
While some women may need assisted reproductive technology to help them expand their families, it’s important to note that it’s still very possible to get pregnant naturally with endometriosis.
Whether you’ve just started trying or are currently in the thick of IVF, the good news is a new test has emerged that can help determine whether a woman has an inflammatory condition most often caused by endometriosis. Tissue growth on the outside of the uterus is high in a protein called BCL6. The ReceptivaDx test detects the presence of BCL6 in the patient’s uterine lining, helping medical professionals give you a clear diagnosis of the issue causing infertility. So if you hope to get pregnant, it may be worth asking your healthcare provider if the ReceptivaDx test is right for you.
A personal endometriosis success story
In the case of Denie Shea, she ultimately took to the internet to find a solution to her ongoing symptoms. After hours of research, she finally landed on a specialist that made the 15-hour drive to her office worth every minute. Denie Shea shares, “Her continued communication made me feel at ease amidst learning what I suspected all along — I have endometriosis. She pointed out details that no doctor or radiologist had noticed or reported. She was 99% sure after the exam and ultrasound that I had endometriosis and possibly adenomyosis.”
Together with her doctor, they made a plan for surgery — which she is now happily on the other side of – and she encourages others that the time to see a specialist is NOW. You know your body better than anyone else, so whether it’s through surgery or the ReceptivaDx test, do not stop seeking answers if you have a feeling that something could be wrong.
Does treating endometriosis increase fertility?
With endometriosis, there is no “one size fits all” treatment plan, which is why getting the proper diagnosis and having your treatment tailor-made to your unique situation is the best way to determine what will help you have the best possible outcome — in this case, not just increasing your fertility but having a healthy pregnancy and child.
Educating yourself, keeping track of your cycle and its related symptoms, and some good old-fashioned persistence in advocating for yourself can make a tremendous difference in getting a diagnosis and receiving the proper treatment. And remember, there are resources, support, and options you can turn to along the way!
Jennifer “Jay” Palumbo is a freelance writer, infertility and women’s rights advocate, former stand-up comic, author of the blog, “The 2 Week Wait,” and proud IVF Mom. Her articles have been featured in Time magazine, Huffington Post, and ScaryMommy. She has been interviewed on news outlets such as CNN, NPR, and BBC, where she has demonstrated her ability to make even reproductive issues fun and educational. You can follow her "infertility humor" on Instagram at @jennjaypal.