Endometriosis

Endometriosis is an inflammatory disease, where tissue, similar to that which lines the uterus, grows in places outside of the uterus, meaning where it does not normally occur and where it does not belong. This infiltrative tissue can cause pain, scarring and adhesions not only on the reproductive organs, but also on other organs within and outside of the pelvis.

Endometriosis impacts around 176 million patients worldwide. There is constant debate surrounding the various theories as to why a patient may develop endometriosis. We do know that there is a genetic component to endometriosis, with patients being more likely to have it if they have close family members who also have suffered. We know that while endometriosis is often seen as a menstrual related disease for those of reproductive age, endometriosis has been documented in teenagers, patients who have not had their period yet, and in patients who have had hysterectomies and are post-menopausal. Endometriosis is found in all races and ethnicities, although there is often a greater diagnostic delay for African American women due to racial biases in the healthcare system.

While some patients who are experiencing endometriosis related fertility are asymptomatic, the majority of endometriosis patients experience symptoms that can indicate disease. While the severity of the symptoms doesn’t always correlate with the extent of the disease, endometriosis could be indicated for patients with generalized pelvic pain, pain with ovulation, pain with menstruation, pain with intercourse, gastroenterological symptoms like diarrhea and/or constipation that are cyclical in nature, frequent urination, back pain, or chronic fatigue. Fertility providers could suspect endometriosis after taking a thorough patient history. During a physical exam performed by a healthcare provider, the uterus may be tender or immobile due to being scarred into a fixed position, or one or both ovaries may be enlarged due to cysts.

Unfortunately, there aren’t yet widely available non-invasive ways to diagnose endometriosis, such as with a blood test. A physical exam or medical history are also insufficient to make an official diagnosis, although a diagnosis can be suspected. Endometriomas can be seen on ultrasound and are endometriosis related cysts on the ovaries that can indicate further disease. While ultrasound technology has improved in terms of picking up further disease, it depends on the skills and training of the sonographer, with the majority of sonographers not trained to pick up superficial disease and adhesions. Diagnosis can be confirmed through biopsy during a laparoscopic surgery. It’s best if patients go to a doctor who performs many endometriosis surgeries a year, is knowledgeable regarding the different presentations of the disease, and who can work with a surgical team to excise disease off of all implicated organs during the time of surgery, not just off of the reproductive organs.

Usually the type of surgical procedure to identify endometriosis is a laparoscopy, which is where a camera and/or other instruments are placed into the body through small incisions on the skin. This allows your doctor to see inside the body and closely examine implicated areas. All visible abnormal areas can be excised during surgery and sent to pathology. Removing all abnormal tissue and related adhesions can not only improve fertility, but also can improve overall symptoms associated with endometriosis.

Treatments for endometriosis are broadly divided into two categories: surgical and medical therapy. Surgical therapy involves excising the area of abnormal endometrial tissue and related scarring and adhesions. It also can involve restoring anatomy and organ function. Endometriomas on the ovaries can be drained or excised, with cysts reported to most likely return if simply drained. More extensive procedures such as removing and repairing a portion of the intestines or bladder may be required if there is extensive endometriosis. It is important to work with a surgeon who is experienced in endometriosis surgery, is prepared to remove all visible disease, and who works with an expert team of urologists and colorectal surgeons for best outcomes.

Medical treatments often consist of hormone therapy that tries to temporarily suppress symptoms caused by endometriosis. One important thing to note is that many of the medical treatments suppress normal function of the ovaries and thus patients are not able to become pregnant while undergoing medical therapy. Also, once medical therapy is stopped, symptoms often return.

A hysterectomy is a personal choice that is between a patient and their provider. As endometriosis is considered a disease existing outside of the uterus, patients who have their uterus and ovaries removed may continue to suffer from endometriosis left in the body. Endometriosis patients that also often suffer with uterine diseases, such as adenomyosis and fibroids, may choose a hysterectomy as a definitive treatment, along with getting endometriosis excised from other organs.

Endometriosis related adhesions and scar tissue can distort and damage the ovaries and fallopian tubes impacting fertility. This may make it difficult to become pregnant or increase the risk of developing an ectopic pregnancy, which is one that occurs outside of the uterus and is most frequently in the fallopian tube. Some research shows that inflammatory agents from the disease itself can also impact egg quality, fertilization and implantation. Surgical procedures to treat endometriosis, particularly those which restore anatomy, excise cysts, disease and adhesions may improve fertility. Surgery on the ovaries themselves can be delicate and should be done by an expert surgeon to reduce harm to the egg reserves. While excision of the disease is linked to increase spontaneous fertility, patients should discuss with their surgeon and their reproductive endocrinologists the risks and benefits of this procedure. Fertility treatments such as IVF can still be effective for patients with endometriosis, although they are not always required to achieve pregnancy.

The good news is that treatment for endometriosis continues to advance, and many with endometriosis are able to manage the condition and become pregnant with or without fertility treatment. Multidisciplinary care such as pelvic floor therapy, mental health support, and nutritional guidance can also help support patients. If you are concerned about endometriosis, speak up! Your health care provider can get more information and individualize recommendations for you.