By Casey Berna
March is Endometriosis Awareness month and a great time to shed some light on a common, yet, often misunderstood disease, that can impact fertility.
What is Endometriosis?
Endometriosis is a disease where endometrial-like tissue exists in the body outside the uterus, often causing pain and inflammation in the areas it impacts. 1 in 10 women have endometriosis, which doesn’t include endometriosis found also among trans and non-binary individuals. While endometriosis is often considered a reproductive disease, and is accountable for up to 50% of infertility among women, endometriosis can also impact many other parts of your body. For example, endometriosis can be found on your bowels, bladder, and appendix, while even occurring in areas like the lungs! Endometriosis symptoms vary, but up to 80% of women with pelvic pain are later diagnosed with endometriosis. Aside from pelvic pain, painful periods or ovulation, you can also experience painful sex, stomach issues, including constipation, diarrhea or painful bowel movements, back or leg pain, frequent or painful urination, chronic fatigue, and for some, infertility and/or recurrent pregnancy loss. 20-25% of endometriosis patients who experience infertility, may not have any symptoms at all.
How does Endometriosis Impact Fertility?
While not all patients with endometriosis experience infertility, there are a few different ways that endometriosis can impact fertility. Endometriosis and resulting adhesions can cause anatomical distortion, moving the ovaries and fallopian tubes out of place, which can negatively impact ovulation and fertilization. Women with endometriosis often have increased cytokines, or inflammatory factors, in the fluid throughout their pelvis. It is suspected that this inflammation could impact egg quality, fertilization and implantation. Endometriomas, which are present in up 44% of endometriosis patients, are benign cysts in nature, but can they can be painful and impact ovarian reserve, therefore affecting fertility. Some studies also show that endometriosis patients are at a higher risk for pregnancy loss.
How is Endometriosis Diagnosed?
If you are experiencing a few endometriosis symptoms, it is quite possible that you may have endometriosis. If anyone is your family, like your mother, aunt, or sister, was diagnosed with endometriosis, you are up to 7x more likely to have the disease. The only way to diagnose endometriosis is through diagnostic laparoscopy. Suspected disease can be removed by your doctor during surgery and sent to pathology to confirm. While all reproductive endocrinologists and obgyn’s are able to perform a diagnostic laparoscopy, not all may be familiar with all of the different ways and places the disease can present, so it is great to seek an expert, high-volume surgeon who focuses on endometriosis.
How is endometriosis treated?
If you think you may have endometriosis, there are a few treatment options available that can not only improve your fertility, but also improve your quality of life. While hormonal medications can sometimes decrease symptoms, they do not improve fertility, nor are they recommended for those trying to conceive and can actually delay treatments to improve fertility.
Endometriosis excision surgery of the disease, including excision of endometriomas, can improve fertility by restoring anatomy and reducing inflammation in the pelvis. Removing lesions and adhesions from all impacted organs, including the bowels and the bladder, can also improve pain and other related symptoms.
Egg freezing and IVF can also be important family building tools for patients with endometriosis. For younger endometriosis patients with a healthy ovarian reserve, it might be worth discussing whether removal of disease, inflammation, and adhesions should be considered before pursuing egg freezing to improve egg quality and quality of life. IVF can also help endometriosis patients build their families. Decisions on when to pursue IVF are made between you and your provider and can be influenced by age and other health factors
Multidisciplinary care is so important when treating endometriosis. Pelvic floor therapy, nutrition, and even acupuncture can help manage the pain and inflammation that comes with endometriosis and infertility.
How to Get Support?
Endometriosis is a challenging disease to live with. If you have endometriosis and are experiencing infertility, it can feel incredibly isolating trying to manage both diseases. Finding great mental health support is an important tool as you navigate these health challenges. Connecting with online patient support groups such as Nancy’s Nook Endometriosis Education, Endometropolis, Endo Warriors, or Extrapelvic Not Rare Support and Education Group can help patients feel less alone. RESOLVE, the National Infertility Association, offers incredible support for those struggling with infertility and pregnancy loss.
If you are struggling with endometriosis, please know you are not alone!
Casey Berna is a social worker and patient advocate in the endometriosis and infertility communities. After experiencing years of misdiagnosis and delayed diagnosis herself, Casey works with fellow advocates and patient-led endometriosis non-profits to help support and educate patients, while also collaborating on ways to transform endometriosis care and broaden access to the multidisciplinary treatments that patients need to live their best life.