A Real Pain | Endometriosis Symptoms and Treatment
Medically reviewed by Dr. Jane van Dis
TL;DR What You Should Know:
- Endometriosis is a common condition that affects roughly 10% of the female population and getting a diagnosis can be difficult and take years.
- Because the cause is not yet known, an exact treatment doesn’t exist so figuring out a treatment usually involves a bit of trial and error.
- Painkillers, hormonal therapy, local surgery and in some cases, hysterectomy, are the main treatments for endometriosis.
Endometriosis is a painful and inconvenient illness that is pretty common affecting about 10% of females. Like many medical conditions that only affect females, the current treatments for endometriosis aren’t perfect and the treatments that are currently available can mean having to make huge, life-changing decisions. Just ask #EndoWarriors Lena Dunham and Sarah Hyland who both decided to share their struggles publicly in order to raise awareness about the invisible illness.
Endometriosis is considered an invisible illness because the symptoms aren’t visible on the outside yet for many it can make everyday activities feel unmanageable, and sadly it’s very common but many suffer and go undiagnosed for years. Finding the right treatment can also take a long time because there isn’t a magic pill or shot to address the symptoms.
What Happens When You Have Endometriosis?
The lining of the uterus, which is formally named the endometrium, acts like a removable wallpaper to the womb. It’s mostly made of tissue and is one of the only parts of the body that regularly changes in size. Every month, hormones tell the lining of the uterus to build up and thicken in preparation to host a fertilized egg, as if building a nest. If a menstruator does not become pregnant within that cycle, hormones will then tell the uterus to shed the extra lining and start over. The shedding travels down through the cervix and out through the vagina. AKA, getting your period.
Endometriosis, however, is when tissue similar to the endometrium starts to grow outside of the uterus for unknown reasons. It can grow on the ovaries, fallopian tubes, bowels, and tissues lining the pelvis. It can even grow outside of the pelvic area (including the lungs, brain and skin) and in rare cases damage other organs. Ouch!
Because this tissue is so similar to the lining of the uterus (endometrium), it is also affected by the same hormones that tell the uterus to shed its lining. But unlike the lining inside the uterus, endometrial tissue does not have a way to exit the body and the shedding becomes trapped. This can cause scar tissue, cysts, or even make organs stick to each other and is usually very painful. On top of all this, period cramping and inflammation that is normally local to the uterus and vagina often spreads to wherever the endometrial tissue has grown, increasing the surface area and level of period pain.
Endometriosis is considered a progressive disease, meaning that the tissues continue to grow over time if left untreated and symptoms can worsen and may lead to infertility.
Endometriosis Symptoms- How Do I Know If I Have It?
The severity of symptoms can range from minor inconveniences to crushing pain, and the extent of a person’s symptoms is not necessarily a reflection of how advanced their endometriosis is. Endometriosis symptoms are usually the worst around a person’s period and getting your period with endometriosis can be a true challenge.
Painful Periods: also called dysmenorrhea. Endometriosis cramps and pain can surround the period one to two weeks before and after, and can cause pain in the lower back and abdomen.
Abnormally Long Periods: periods can last 7 days or more.
Pain During Sex: pain during or after sex is a common endometriosis symptom.
Pain When Using The Bathroom: pain when peeing or having a bowel movement is especially common during a period. Blood in the stool or urine is also a possibility.
Digestive Symptoms: such as bloating, diarrhea, constipation, nausea, vomiting, and pain.
Heavy Menstrual Bleeding: also known as menorrhagia, heavy menstrual bleeding (soaking through a pad or tampon faster than once an hour) can be a warning of endometriosis. Endometriosis can also cause bleeding between periods.
Infertility: sometimes people find out that they have endometriosis because they are having trouble getting pregnant.
Fatigue: endometriosis can make people feel excessively tired.
How Do You Get Diagnosed with Endometriosis?
If you are experiencing any of the symptoms listed above, your doctor or health care practitioner may choose one or several ways to try to find the source of your pain.
Unfortunately, there isn’t a perfect test for diagnosing endometriosis, and it can be very difficult for some to get a diagnosis because of this. To diagnose endometriosis, your doctor may use one or more of the following approaches:
Pelvic exam: the doctor uses their fingers to feel inside the pelvis for any growths. It can be difficult to feel endometriosis areas unless there are significant amounts of scar tissue or large cysts present at the time of the exam.
Ultrasound: the same type of machine that lets pregnant people see their baby in the womb can also be used to create an image of cysts. The doctor may either place a wand over the abdomen or inside the vagina.
MRI: Magnetic resonance imaging (MRI) uses the body's natural magnetic properties to produce detailed images from any part of the body. These pictures can be especially useful for mapping out the exact location of scarring if you already have surgery planned to remove endometrial tissue.
Laparoscopy: this is a minimally invasive surgery that involves inserting a camera through the abdomen to view inside and look for endometrial tissue in the pelvis. Doctors can remove endometriotic implants, as well as remove endometrial cysts in the ovary(s).
Latest Endometriosis Treatment Options
There are many theories about why endometriosis happens, but none have been scientifically proven yet. Because an exact cause hasn’t been determined, that makes finding a cure difficult (PS- you can write to your congressional representatives and demand more funding for research. You can find out who represents you on the House and Senate websites).
The treatment approach for endometriosis depends on how bad symptoms are, and what plans the person with it might have to get pregnant in the future. Treatment ranging from conservative to more advanced includes:
Pain Medication: over-the-counter painkillers such as ibuprofen (Advil) can ease the pain from cramps and help reduce inflammation.
Hormone Therapy: hormones have been shown to slow down the growth of endometrial tissue, reduce hormone fluctuations, and make pain more manageable. A doctor may prescribe birth control pills, patches, or vaginal rings, progestin therapy, aromatase inhibitors, and/ or other hormonal treatment.
Surgery: laparoscopy to remove excess tissue growth can help with the pain of endometriosis as well as increase chances for fertility.
Hysterectomy and Ovary Removal: removal of the uterus and ovaries. This option will remove the possibility of giving birth and can potentially cause other long-term negative health effects. Hysterectomies are not medically proven to prevent further tissue growth, so it is becoming a less common treatment option in comparison with local surgeries to remove tissue growths.
Speak Up About Your Pain- You Know Your Body Best
One reason endometriosis can be so hard to diagnose is because people often either think their pain is normal, or they assume their doctor won’t listen to them. Being at a doctor’s office or visiting a clinic can feel annoying or even seem intimidating, but ultimately you are there to take care of YOU and fight for your health. If you believe you may have endometriosis, speak up to your doctor or health provider. If you don’t feel acknowledged, find another ObGyn with whom you feel heard. Finding someone who actually listens is essential to care. While endometriosis may be difficult to diagnose and treat, many are able to get a diagnosis and find options that work best for them.