It's not all in your head. A Swedish expert on the causes, symptoms and treatment of endometriosis

[6 min read]
In this article: 
  • Endometriosis is a common condition that can cause painful periods, pain during sex and many other symptoms.
  • Endometriosis occurs when cells similar to those in the lining of the uterus grow outside the uterus.  
  • There are several effective treatment options for endometriosis. 
What do celebrities Amy Schumer, Lena Dunham, Padma Lakshmi, Susan Sarandon, and Whoopi Goldberg all have in common?  They have all been diagnosed with endometriosis and suffered in pain for years before receiving diagnosis and treatment.
One in ten people with uteruses has endometriosis, yet on average it takes seven to eight years to be diagnosed. Why? These patients often suffer in silence, thinking painful periods are normal.  Others have gone to countless doctors, only to be dismissed, told their symptoms were normal, written off as drug seekers and told it was all in their head.
While mild cramping with your period is normal, pain that makes you miss school or work, vomit, pass out or have to go to the emergency room isn’t normal. In fact, these are all common signs of endometriosis.
“It is very common for women to suffer for years before they are finally diagnosed with endometriosis,” shares Brooke Winner, M.D., a minimally invasive gynecologic surgeon and the Medical Director for Gynecologic Surgery at Swedish Medical Center. “Many women have tried to seek help but are told that painful periods are normal. Or they get a pelvic ultrasound and are told everything is normal.  However, a normal ultrasound does not rule out endometriosis.  If you are not getting answers from your primary care doctor, reach out to an OB/GYN or a minimally invasive gynecologic surgery specialist.”
March is Endometriosis Awareness Month, so we sat down with Dr. Winner to learn more about this common condition and how you can find relief.
What causes endometriosis?
Endometriosis is when cells similar to those in the lining of the uterus (where your periods come from) are growing outside the uterus. We don't know how they get there, there are lots of different theories, but the leading theory is that it's genetic and you are born with those cells in the wrong place. In fact, women who have a first degree relative with endometriosis are 7-10 times more likely to have it themselves.
Every month, when the uterus sheds its lining and a woman starts her period, the endometriosis cells bleed too, but that blood can't flow out like a period - it's trapped in the abdomen. This causes pain, and over time it can cause scarring as things become stuck together and are pulled and tugged in an unnatural way. 
What are the most common symptoms of endometriosis?
The most common symptom of endometriosis is painful periods. Following that, a woman may begin to experience pain with intercourse or bowel movements. Some will get cyclic constipation or diarrhea around the time of their cycle. Pain with urination or a full bladder, bloating, back pain, leg pain, pain with ovulation and pain with orgasm can all be symptoms too.  Over time the pain can progress to all the time, not just around the menstrual cycle.
Are there any symptoms of endometriosis that women find surprising?
Women are often surprised to find that pain with intercourse and bowel movements are related to endometriosis. These are also the symptoms that women are embarrassed to discuss, or may not think to mention. However, an experienced endometriosis specialist will always ask about all of these symptoms, says Dr. Winner.
“If you have been suffering with pain, and been dismissed, please seek out an endometriosis specialist. The most common feedback I get from patients was that I was the first doctor that listened and believed their pain!" she reports.
How is endometriosis diagnosed?
Sometimes, endometriosis lives in a cyst on the ovary called an endometrioma, which is an ovarian cyst filled with endometriosis. An endometrioma will show up on an ultrasound, whereas small spots of endometriosis will not.  So it is very important to note that a normal ultrasound does not rule out endometriosis.  The only way to know for sure if someone has endometriosis is to do a laparoscopic surgery that looks inside the belly with a camera.
“If I see something that looks like endometriosis, I always remove it (called excision, as opposed to ablation, which is burning it).  We then take that tissue and send it off to the lab to be looked at underneath the microscope - that's the gold standard for diagnosing endometriosis,” says Dr. Winner.
How is endometriosis treated?
According to Dr. Winner, “If your ultrasound is normal, we can try and suppress possible endometriosis by stopping your periods with hormonal options like birth control pills, the patch, the vaginal ring or the medicated intrauterine device (or IUD).  Over-the-counter medications like Advil, Aleve or Tylenol can help with pain as well."
“However, if treatment with medication does not work, or it works but you don't tolerate the hormonal side effects, or if you are trying to get pregnant (so can't be on birth control) - those are all reasons that many women go on to have surgery.” she explains. 
What are the surgical options for treating endometriosis?
Laparoscopic ablation (burning) and excision (cutting out) of endometriosis can both be effective for relieving pain. You should consult with your doctor about which is right for you. 
“Removing endometriosis surgically is very effective for pain relief and also improves fertility,” adds Dr. Winner. “Laparoscopic surgery is outpatient, so you go home the same day, and usually only takes a few weeks to recover.”
For women that are done having children or have decided for sure they don't want to become pregnant, they may choose a hysterectomy with excision of endometriosis. "Women who have endometriosis are also more likely to have adenomyosis, which is kind of like endometriosis embedded within the muscular wall of the uterus," explains Dr. Winner, "and the only surgical treatment for adenomyosis is a hysterectomy." Depending on the situation, the ovaries can be left in place, so a hysterectomy does not mean you go through menopause, but it does mean you would never have another period. 
Does endometriosis impact fertility?
Dr. Winner assures readers that not all cases of endometriosis will affect a woman’s ability to get pregnant. And, if it does, you can take comfort in knowing there’s a clear (and often effective) path forward to help you get pregnant.
“Women with more severe endometriosis can get scarring, which may block their fallopian tubes or cause them to swell,” explains Dr. Winner. “Minimally invasive gynecologic surgeons can work closely with your fertility specialists to come up with a plan that’s right for you.”
Find relief
Endometriosis affects many women. Fortunately, there are many approaches that can help you find relief from painful periods and other symptoms. Talk to a gynecologist about your symptoms. Together, you can find a way to feel like yourself again and not be limited by the pain of your period each month.
Find a doctor
Our Swedish provider directory can help you find a gynecologist, women's health specialist or primary care doctor that's right for you. Whether you require an in-person visit or want to consult a doctor virtually, you have options. Swedish Virtual Care connects you face-to-face with a nurse practitioner who can review your symptoms, provide instruction and follow up as needed. If you need to find a doctor, you can use our provider directory.

Additional resources

This information is not intended as a substitute for professional medical care. Always follow your health care professional's instructions.
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About the Author

Whether you are seeking gynecological advice, need help navigating your way through the menopause stage of life or researching a recent breast cancer diagnosis, the Swedish Women's Health Team is committed to helping women find the information they need to live happy and healthy lives.

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