Care Plan
First steps to consider
- See a healthcare provider to get a diagnosis and discuss a treatment plan.
- Endometriosis can be treated with lifestyle changes, physical therapy, medication, or surgery.
Emergency Care
Go to the ER or call 911 if you have any of the following symptoms, which may be signs you’ve developed serious complications from endometriosis:
- Severe abdominal or pelvic pain
- Severe constipation, rectal pain, or rectal bleeding
- Heavy vaginal bleeding
- Extreme lightheadedness or fainting
- New chest pain or shortness of breath
- Fever along with your pain
What is endometriosis?
Endometriosis causes pain in the pelvis. It occurs when tissue that normally lines the uterus (the endometrium) grows outside the uterus, usually on the ovary, fallopian tubes, bladder, and bowel. In some cases, the tissue may even grow on distant sites such as the diaphragm and around your lungs.
Even though this endometrial tissue is outside the uterus, it still thickens, breaks down, and bleeds with each menstrual period. The tissue has no way to leave the body, so it becomes trapped and inflamed.
Some women may not know they have it because they have few to no symptoms, while others may have extremely painful and debilitating symptoms.
Endometriosis is diagnosed in about 10% of menstruating women but experts think it’s more common and often goes undiagnosed.
Endometriosis symptoms
Most women with endometriosis have mild to moderate symptoms. They may have some discomfort and pain, but they can still go to school or work and keep plans with family and friends. Some women, though, have severe pain that interferes with their life.
Symptoms usually occur in a cycle, beginning 1–2 days before your period starts. They last throughout the period, and continue for several days after your period stops. Symptoms include:
- Constant pelvic pain—dull, sharp, throbbing, or burning
- Painful or debilitating menstrual cramps that get worse over time
- Pain during or after sex
- Bowel issues, such as painful bowel movements, diarrhea, constipation, and cramping
- Bladder problems, such as increased urinary frequency, urgency, and pain with urination
- Infertility
- Abnormal uterine bleeding
- Back pain
- Chronic fatigue
While these symptoms may mean you have endometriosis, they can be caused by other conditions that should be ruled out. It’s more likely to be endometriosis when you have several of these types of symptoms and not just one.
Symptoms may temporarily improve with pregnancy, and they usually go away completely with menopause.
Pro Tip
Discuss with your doctor how to manage your pain if you’re also trying to get pregnant. —Dr. Jessica Katz
Causes
The exact cause of endometriosis is unclear. One theory is that menstrual blood containing endometrial cells flow back through the fallopian tubes and into the pelvic cavity (called retrograde menstruation).
It might also be that the body does not recognize and destroy endometrial tissue that is growing outside the uterus. In some cases, following a surgery such as a hysterectomy or C-section, endometrial cells may attach to the incision.
Factors that increase the risk for endometriosis include:
- Not having children
- Longer exposure to estrogen from starting your period before age 11 and reaching menopause at an older age
- Short menstrual cycles (less than 27 days)
- Heavy periods
- A medical condition that prevents the passage of blood during your periods
- Being tall (5’8” or taller)
- Low body mass index
- Exposure to severe physical or sexual abuse in childhood
- A diet high in trans fats
- Having family members with endometriosis
There are also factors that decrease the risk for endometriosis:
- Giving birth to more than one child
- Longer periods of breastfeeding
- Starting your period after age 14
- Taking birth control pills
- Consuming omega-3 fatty acids
How to diagnose endometriosis
Your doctor can often diagnose endometriosis based on symptoms and a pelvic exam. They may order an ultrasound or MRI, though neither are definitive tests.
The only way to get an accurate diagnosis is with a laparoscopy. The doctor uses a scope to look for signs of endometrial tissue outside the uterus. But often women are treated without having to have a laparoscopy.
The American Society for Reproductive Medicine classifies the disease into 4 stages. Endometrial tissues outside of the uterus are called implants, and bands of scar tissue, called adhesions, may also develop.
Stage 1: There are a few isolated implants and no adhesions.
Stage 2: Implants are superficial (less than 5 cm deep) and are on the lining of the abdominal cavity and ovaries. There are no adhesions.
Stage 3: There are multiple implants, both superficial and deep. You may have adhesions on the fallopian tubes or ovaries.
Stage 4: There are multiple superficial and deeply invasive implants. You have large ovarian endometriomas, a type of cyst that develops when endometrial tissue grows in the ovaries. You have filmy and dense adhesions.
Pro Tip
Ask your doctor: What are all the treatment options if the first one doesn’t work or help? —Dr. Katz
Treatment for endometriosis pain
Treatment plans for endometriosis vary based on your pain level.
If you have mild to moderate pain, your doctor may recommend:
- Ibuprofen (Motrin or Advil)
- Continuous hormonal contraceptives that contain estrogen and progestin. They’re available in several forms, such as pills and a patch.
- Progestin-only pills for women who can’t take estrogen
- Physical therapy can help target inflammation and other issues in the pelvis. Therapy includes manual therapy, tissue mobilization, and biofeedback.
If your symptoms are under control, you’ll continue this plan until you want to get pregnant or you go through menopause. If symptoms haven’t improved, your doctor may try a different hormone combination.
If you have severe pain, or if hormonal contraceptives and ibuprofen don’t help, treatments include:
- Gonadotropin-releasing hormone (GnRH) analogs, a group of medications that reduce the production of estrogen and progesterone. These are prescribed with “add-back” hormonal therapy to limit side effects, like hot flashes and vaginal dryness.
- Aromatase inhibitors, prescribed if GnRH analog treatment is not effective.
- A relatively new medication, called Orlissa, reduces estrogen. Reducing estrogen may cause side effects like hot flashes, night sweats, and lower bone density, so it should not be used for more than two years.
- Laparoscopy, sometimes used to diagnose endometriosis. The doctor can remove endometrial tissue they find during the procedure.
- If nothing else helps, you may need a hysterectomy with or without removing the fallopian tubes and ovaries.
Treating infertility
Infertility caused by endometriosis should be treated by a reproductive endocrinologist who specializes in infertility. They will do a thorough fertility evaluation and consider the stage of your endometriosis.
If it’s stage 1 or 2, you can try less invasive fertility treatments like ovulation induction and intrauterine insemination. You can also do 6 months of timed intercourse if you want to try to conceive naturally.
If you have stage 3 or 4, you can consider assisted reproductive technology (ART). This includes in vitro fertilization (IVF), intracytoplasmic sperm injection, and assisted reproductive hatching. ART is recommended for women over 35 and those with:
- Stage 3 or 4 endometriosis
- An endometrioma
- A partner with severe male factor infertility (there isn’t any sperm found in the semen)
ART isn’t recommended if you recently had surgery for endometriosis, since repeat surgical treatment doesn’t improve fertility.
Coping with endometriosis
Endometriosis can be very challenging to live with, both emotionally and physically. Even with treatment, it can take a couple of months before you start feeling better, so don’t lose hope.
Dr. Rx
There are alternative options to medicinal treatments, such as osteopathic manipulative medicine, acupuncture, diet changes, and cognitive behavioral therapy. —Dr. Katz
Some women try acupuncture, ultrasound therapy, osteopathic medicine, and Chinese herbal medicine.
Some studies found that eating fewer foods that increase inflammation (red meat, pork) and more green vegetables, fruit, and omega-3 fatty acids may reduce symptoms.
Working out regularly and managing stress levels may help. Cognitive behavioral therapy (CBT) has also been found to help women cope with the pain.
You may find support groups helpful like:
- Endowarriors
- Facebook groups like MyEndometrisisTeam
Most people with endometriosis will find a treatment that works for them and they will experience pain relief. It might not be immediate, but don’t give up! You will be able to live without debilitating pain again.
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