If you have endometriosis, or you know someone who does, chances are you’ve been frustrated at misinformation about the disease. Unfortunately, myths about endometriosis aren’t just misinformation — they can isolate women suffering from the disease and send the signal that endometriosis is “all in your head,” potentially causing emotional distress or delaying diagnosis and treatment.
Read on to find the truth behind some of the most common misconceptions about endometriosis — we’re betting at least one of them will surprise you.
The content in this post and in the links are for educational purposes only. Zocdoc does not provide medical advice, diagnosis, or treatment. Please discuss all medical questions and concerns with your healthcare provider.
Myth: Endometriosis is just like bad menstrual cramps
While some discomfort and cramping during your period is normal, the pain from endometriosis is often severe enough to interfere with your day to day life — and it’s not normal. Women with endometriosis may also experience pain between periods, especially during ovulation, and pain during intercourse or during bowel movements, explains Dr. Shefali Patel-Shusterman, a New Jersey-based gynecologist on ZocDoc.
Myth: Mild-stage endometriosis means mild pain
The American Society for Reproductive Medicine’s endometriosis stages — which go from stage I, or mild, to stage IV, or severe — are based on scarring and how much endometriosis is likely to impact your fertility. They’re not based on your level of pain. Even stage I endometriosis has the potential to cause debilitating pain. And, conversely, someone with a moderate or severe amount of scarring from endometriosis could experience just mild pain, according to Dr. Seckin, endometriosis specialist and co-founder of the Endometriosis Foundation of America (EndoFound).
Myth: You just need to live with the pain from endometriosis
Living with pain from endometriosis isn’t normal, and it’s not something you should simply “put up” with. Your doctor can try a range of therapies to relieve your pain. These might include anti-inflammatory medications designed to reduce pain and inflammation, or hormonal medications (like oral contraceptives or estrogen blockers) that stabilize your hormone levels and manage your symptoms, according to the National Institute of Child Health and Human Development.
Myth: Having endometriosis means you can’t get pregnant
About 4 in 10 women with endometriosis will struggle with infertility, according to The National Fertility Association. Endometriosis can cause the formation of scar tissue that could affect your ability to get pregnant, or trigger inflammation that might get in the way of a successful pregnancy. Women struggling with infertility due to endometriosis may need fertility treatments or in-vitro fertilization to have children. However, others might not experience any issues with fertility at all.
Myth: Pregnancy can cure endometriosis
While pregnancy is often touted as a way to relieve endometriosis symptoms, it’s not a cure. In addition, new peer-reviewed research published in Human Reproduction Update reports that it might not be helpful in every case, and that pregnancy likely doesn’t reduce the size or number of the lesions from endometriosis.
Myth: Having endometriosis means you’ll need a hysterectomy
There are many other treatments available to help manage both the pain and the infertility that can be caused by endometriosis. There are also more conservative surgical treatments that allow surgeons to remove lesions from endometriosis without removing your uterus entirely, like the excision surgery performed at Dr. Seckin’s practice.
Myth: A hysterectomy is the best cure for endometriosis
Some women with endometriosis whose symptoms aren’t relieved with other treatments might ultimately choose to have a hysterectomy. But, it’s not a cure-all for everyone. One study published in Facts, Views & Vision in ObGyn reported that 62% of women with advanced endometriosis who have a hysterectomy still experience some form of recurrence. If surgeons remove the uterus and ovaries, the recurrence rate is up to 15%, according to the University of Michigan Health System. Your doctor will help you weigh the pros and cons of a hysterectomy, so you can decide whether it’s right for you.
Myth: Teens don’t get endometriosis
Endometriosis can affect women and girls at any age. In fact, it’s found in up to half of girls who complain of pelvic and period pain, according to UCLA Obstetrics and Gynecology. Endometriosis can also affect girls before they start their period, though it is very rare.
Myth: You can cure endometriosis with lifestyle or herbal supplements
Unfortunately, there’s no magic bullet for treating endometriosis — and, currently, there is no cure, explains the Eunice Kennedy Shriver National Institute of Child Health and Human Development.
If you’re taking any vitamins or herbal supplements, make sure to tell your doctor. Supplements have the potential to interact with medical treatments, so your doctor should know what you’re taking to provide the most effective care.