12 Things You Should Know About Endometriosis

Some may think it’s personal, slightly embarrassing or just plain ole rude to talk about that “time of the month.” But, it’s a fact of life and a natural function of the female body. It’s menstruation.

We all know periods can be painful all by themselves. Couple that with a debilitating condition called endometriosis, which usually overlaps with your cycle, that affects 176 million women worldwide and 1 in 10 women in the United States, and it’s pure agony. Not to mention, the timeframe from the onset of your symptoms to an endometriosis diagnosis averages 10 years!

So, don’t resign to the idea that you or your loved one just has “bad” periods. It may be something a little more serious. We sat down with OB-GYN Drs. Emma Miller and Kristin Wexler from Timpanogos Women’s Center in Utah to break this social taboo, help raise awareness and educate people on endometriosis.

1. It’s more than a painful period.

Endometriosis occurs when endometrial cells (the cells that are usually found in the lining of the uterus) are displaced outside of the uterine cavity. These cells can land on the ovaries, fallopian tubes, uterus, bowel, bladder, or pelvic wall.

2. Endometriosis doesn’t discriminate.

It’s hard to say for sure how many women are affected by endometriosis. Studies estimate that it may occur in up to 70 percent of women and adolescents with pelvic pain. However, some people who have endometriosis are asymptomatic.

3. Who knows what causes endometriosis.

There are a couple of different theories:

• The most common theory is that it occurs by “retrograde menstruation”. Endometrial cells usually flow out through the vagina during the menstrual cycle. Instead, they may “backflow” through the fallopian tubes and into the pelvis.
• Another theory suggests that there are normally some cells that “backflow” into the pelvis but the immune system does not clear them effectively.
• A third theory suggests that these endometrial cells may spontaneously form in the pelvis (from stem cells).
• Lastly, some think that the cells travel through the bloodstream or lymphatic networks to get to new places.

4. What we DO know is that it typically hurts.

Symptoms of endometriosis usually start in the early reproductive years. The triad of symptoms includes:

• Severe pain with menstrual cycles.
• Pain with intercourse (usually a deeper pelvic pain).
• Pain with bowel movements.

Also, it’s important to note that symptoms don’t correlate with the severity of the disease. Some people may have severe pain but a lower stage of endometriosis. Others may have a more advance stage but mild symptoms.

5. I have a “bad” period. I must have endometriosis!

Many people jump to the conclusion that they have endometriosis if they have pelvic pain, which leads to a self-misdiagnosis. There are so many conditions that can cause pelvic pain: urinary infections, vaginal infections, ovarian cysts, constipation, and pelvic floor disorders, just to name a few things.

6. So how do you know if you have it?

The only way to definitively diagnose endometriosis is by surgery. We use a camera to look in the abdomen/pelvis (laparoscopy) and find endometrial cells. These cells can appear as different colors – red, white, brown-yellow, or black – and, sometimes, the tissue that drapes the pelvis can even have holes or windows in it.  If we see any of these, we can biopsy it to confirm a diagnosis.

7. Don’t confuse endometriosis with premenstrual syndrome (PMS).  

The timing and symptoms of PMS are different from endometriosis. Patients with PMS have more of a mood component – they will note anger, irritability, anxiety, mood swings along with physical symptoms of cramping. However, their symptoms usually start midway into the cycle and resolve with the start of their menstrual cycle. Whereas, with endometriosis, the symptoms peak with the menstrual cycle.

8. Just make it stop…

• The first line of treatment are over the counter medicines (NSAIDS like Motrin). Usually people have already tried this when they visit their doctor.
• The next step would be to use hormonal regulation to help lighten or stop the menstrual cycle, which helps to decrease the associated pain. We advise patients to try a continuous hormonal pill so that they skip their periods altogether.
• We try not to operate on everyone who has pelvic pain, but, if these methods don’t help, the next step would be a diagnostic laparoscopy. If endometrial cells are found during surgery, a biopsy is sent to confirm the diagnosis. Burning these cells or removing them can treat symptoms for a period of time. However, symptoms tend to recur.
• Your doctor may even recommend a medication called Lupron before or after surgery to shut down the signal to these cells (similar to a false-menopause) so that they shrink or die off.
• The only definitive treatment would be to remove the uterus, tubes, and ovaries.

9. Endo might make you emo.

Persistent pain can cause people to miss out on work/school and social functions. It can also interfere with partner intimacy.

10. Try this to ease the pain.

Some people have found benefit in exercise and acupuncture as a method of stress reduction. Also, a diet low in red meats and high in fruits/vegetables can decrease pain associated with menstrual cramping.

11. Baby-Baby-Baby…

Endometriosis has been found in up to 50 percent of women undergoing laparoscopy for infertility. The endometrial cells in the pelvis result in an inflammatory response that may cause the tissues to stick together (form adhesions). This can distort the normal anatomy and cause the fallopian tubes to kink, preventing the egg and sperm from meeting. It is also theorized that the inflammation in itself creates a hostile environment for fertilization to occur. Having endometriosis does not mean that you will definitely have infertility issues.

12. You are not alone.

Celebrities like Whoopi Goldberg, Lena Dunham, Dolly Parton and Jillian Michaels have opened up about their personal struggle with endometriosis and helped raise awareness about the condition.

March is Endometriosis Awareness Month. Dr. Emma Miller and Dr. Kristin Wexler treat patients at Timpanogos Women’s Center, an affiliate of Timpanogos Regional Hospital, in HCA Healthcare’s Mountain Division.