Endometriosis: What is it and how do you know if you have it?

Endo-what?

Not many individuals have heard of endometriosis or know what it is. There are also so many myths surrounding the cause and treatment of this condition that even once someone is diagnosed, it can be challenging to know what to do.

Endometriosis is a condition most often affecting the pelvis and the pelvic organs. Endometriosis occurs when lesions made of tissue similar to that found in the uterus grow on other organs and structures. Because the tissue is like uterine tissue, it responds to hormones in the same way, particularly estrogen. This means the tissue can bleed and cause pain before or during your period. The lesions can occur on any pelvic or abdominal organ and, in some cases, have been found on the lungs and diaphragm.

What are the Symptoms?

Symptoms will range depending on the location of the endometriosis but could include chronic pelvic pain, painful periods, pain with sex, ovulation pain, bladder pain, urinary frequency during the day or at night, and irritable bowel-like symptoms including constipation, and infertility or difficulty conceiving. Other symptoms that can occur but are less common include nausea, fatigue, diarrhea, bloating, and headaches.

What Causes it?

Although we have come a long way in understanding how endometriosis works, it is still unclear exactly why this happens. However, it is thought to be a combination of factors including, but not limited to, inflammation, immune dysfunction, genetics, and hormones. There is also a high association of endometriosis with irritable bowel syndrome, interstitial cystitis, and fibromyalgia.

How Do I Find Out if I Have it?

The most conclusive way to diagnose endometriosis is with laparoscopic surgery because it does not always appear on ultrasounds or other types of imaging such as MRIs (Magnetic Resonance Imaging) or CTs (Computed Tomography). Often, a general gynecologist may not have the background to diagnose or appropriately perform diagnostic laparoscopic surgery. However, some things may help your doctor make the diagnosis and refer you to a specialist who can. These include cramping or pain that occurs one, two, or more days before your actual period starts, a deviated or “stiff” uterus, a “hard to find” cervix, asymmetrical ovaries, a family history of endometriosis, as well as any other pain, bladder or bowel symptoms you may be experiencing.

What Does the Normal Progression of the Disease Look Like?

Everyone’s experience with endometriosis is different. However, the progression can often look similar, starting in adolescence and progressing through adulthood. An individual may start with painful periods during their teenage years. Into their 20s, they may begin experiencing pain a few days before their period and may start experiencing other symptoms such as bowel or bladder issues or may be diagnosed with something like irritable bowel syndrome (IBS). Then, as they approach their 30s or later in life, the pain and symptoms may become more constant and more chronic, further limiting function. This progression is not necessary for a diagnosis but is commonly seen and may help determine whether seeing an endometriosis specialist is right for you.

So, What Can I Do?

The treatment plan for individuals with endometriosis will vary dependent on your triggers, symptoms, and location of the endometriosis. Surgically, a specialist can excise or cut out endometriosis. This is much more effective than a hysterectomy or ablation, a technique where the tissue is burned away. A hysterectomy does not address any lesions on organs other than the uterus, and ablation often leaves behind much of the lesions, resulting in minimal symptom relief or symptom recurrence, although some relief, possibly due to reduced estrogen levels, may occur.

Hormonal therapy can also provide relief or reduce the progression of the disease. Progesterone is typically preferred over most oral contraception or birth control. Most forms of birth control generally are a combination of progesterone and estrogen. As we have discussed, endometriosis thrives on estrogen, which may help if taken continuously to avoid menstruation but may not offer the most optimal relief. Progesterone-only pills, sometimes called mini-pill, may be more helpful.

Other treatments that can be helpful, dependent on your symptoms, include bladder medications, injections or nerve blocks, nerve medications, acupuncture, counseling, nutrition therapy or dietary changes, herbal supplements, fiber supplements, antacids, Botox injections, and pelvic floor physical therapy.

Ideally, pelvic floor physical therapy is recommended in conjunction with many treatments, including surgery. This is because, often, the muscles around the pelvis will tense up and spasm in response to the chronic pain and inflammation, and even if the endometriosis is removed, much of that tension may remain. Therefore, it is usually recommended that you complete a pelvic floor physical therapy trial after surgery to address this muscle tension. Pelvic floor physical therapy can also help reduce symptoms if surgery is something you wish to avoid. Physical therapy treatments include, but are not limited to, stretching, manual therapy, relaxation exercises, activity modifications, and education.

Ultimately, endometriosis has no cure, but there are many treatment options that can provide relief and allow you to live a full life. If these symptoms sound familiar, consider finding an endometriosis specialist who performs minimally invasive gynecologic surgery and seeks out pelvic floor physical therapy so that they can develop an individualized treatment plan for you. The Spaulding Outpatient Center for Pelvic Health at Care New England is designed to offer interdisciplinary treatments and services to address your specific pelvic health needs.