Endometriosis is a condition that affects 1 in 10 women with a uterus, and even some without one.

Despite how common it is, it often goes undiagnosed and ignored, by both women themselves and medical professionals, for years.  That’s why it’s important to recognize the warning signs of endometriosis, document your symptoms and seek the right type of care.  Endometriosis can cause chronic, debilitating pain and no one should have to live that way. 

Here are some important warning signs of endometriosis to watch out for.

---

1. Severe Cramping

Since endometriosis is associated with a woman’s menstrual cycle, severe cramping is one of the most common symptoms.  Most women with endometriosis experience symptoms starting with their very first period, so it’s hard to know what is considered normal menstrual cramps if you’ve never had anything but the “severe” ones.

Menstrual cramps are unpleasant no matter what, but here are a few warning signs that it could be endometriosis:

• • Cramping so bad that extra-strength painkillers don’t take the pain away
  • Cramps accompanied by nausea, vomiting or dizziness
  • Cramping pain that radiates from the pelvis to the thighs, lower back and buttocks.
  • Cramps that begin before your period and last longer than a week.

2. Abnormal Bleeding

Again, hard to know what’s considered normal vs. abnormal, as some women are just prone to heavy periods.  But endometriosis isn’t synonymous with just a heavy flow.

Some things to watch out for when it comes to menstrual bleeding with endometriosis:

• • A heavier than normal menstrual flow 
  • A lighter than normal menstrual flow
  • Spotting instead of a regular period
  • Spotting or bleeding in between regular periods
  • Dark brown blood or spotting (that looks like old blood)
  • Menstrual blood containing lots of large clots

If blood is not being properly expelled each month, women can experience cases of abnormal bleeding.  But any of these can also signal a lot of different conditions, and not just endometriosis.  Any menstrual changes should always be documented and discussed with your doctor.  Changes to your menstrual cycle are big red flags that something is going on inside your body. 

3. Pelvic Pain

Pelvic pain is one of the first symptoms that might cause a woman to seek help from a medical professional.  For women with endometriosis, the pelvic pain might be felt during ovulation, while on their period, or they may experience the pain chronically.  Endometriosis is known to be one of the most excruciatingly painful conditions that exists, so debilitating pelvic pain is a big warning sign.

Where and when a woman experiences pelvic pain can be different, as it all depends on where the endometrial tissue is growing.  Some women with severe endometriosis don’t experience any pelvic pain, while others might have only a few spots, but feel a lot of pain.  The endometrial tissue can also form adhesions, which only cause pain during certain activities like sitting, running, bending over or squatting. 

4. Painful Bowel Movements or Urination

The uterus sits very close to other internal organs, including the bladder, bowel, intestines and rectum.  This means that there is always a chance of endometrial tissue growing on these organs or forming adhesions around them.  If that happens, going to the bathroom can be extremely painful.  The pain can range from slight pressure as the bladder increases, to full out screaming pain during a bowel movement.  It might feel almost impossible to bear down while eliminating, so avoiding constipation is key.  On the other hand, some women experience diarrhea or loose stools during their period, but it’s still just as painful to go. 

5. Painful Intercourse

If the mere idea of intercourse makes you cringe in pain, it could be a warning sign of endometriosis.  Endometriosis can cause pain during intercourse, even when a women is not currently on her period or experiencing any pain.  This is mostly due to any adhesions that may have formed.  During intercourse, we use our pelvic floor muscles to relax and contract.  But if they are compromised by endometrial tissue or adhesions, this can be extremely painful to do.

Orgasms can also cause a lot of pain in women with endometriosis, which is a sad fact, since they should be able to enjoy them as much as anyone else. But again, the contracting of those pelvic floor muscles can be restricted and cause pain, both in the moment, as well as long afterwards. 

6. Lower Back, Leg or Hip Pain

Endometriosis is regularly associated with pelvic pain, but it commonly causes pain in the lower back, stomach, legs or hips as well.  Endometrial tissue and adhesions can grow practically anywhere, even as far up as the diaphragm and lungs. But endometrial tissue growing on the pelvic organs can affect the function of our pelvic floor muscles, abdominal muscles and hip flexors.  These muscles control our lower back, stomach, hip and leg movements, essentially they are our “core” muscles.  If you’re in pain simply from trying to move around like a normal person, it could signal something such as endometriosis. 

7. Inflammation

Endometriosis and inflammation go hand in hand.  The lining of the uterus essentially becomes inflamed each month, and the inflammation recedes once that lining is shed.  Therefore, the pain of endometriosis is caused by inflammation from the endometrial tissue growing outside the uterus that is unable to be shed. 

With endometriosis, women may experience inflammation in other parts of their body as well.  This can include pain or swelling in their hands, feet or joints.  Many women also develop symptoms of other inflammatory autoimmune disorders such as chronic fatigue syndrome, thyroid problems, rheumatoid arthritis, vitiligo, lupus and more. 

8. Excessive Bloating

“Endo belly“ as it’s lovingly called, is a major warning sign of endometriosis.  It refers to the excessive bloating that many women with endometriosis experience during a flare up.  If we go back to the last point, this bloating is partly due to the inflammation of the endometrial tissue outside the uterus, and the restriction on the digestive system caused by adhesions.  While bloating is common for many women during their periods, endo belly can make a women look 6 months pregnant in a matter of just a few hours. 

9. Infertility

Yes, infertility is often associated with endometriosis, and it’s perhaps the most common reason woman actually get a proper diagnosis.  But endometriosis doesn’t always cause infertility, so just because you’ve been able to have children doesn’t instantly mean you don’t have it.  In fact, I personally didn’t start to experience symptoms of endometriosis myself until after the birth of my second child, and I was still able to conceive a third child without any intervention. It all depends on where the endometrial tissue is growing and which organs are affected.  But if you are suffering from infertility, endometriosis could definitely be the culprit. 

10. Fatigue

Of all the warning signs of endometriosis, I saved this one for last because it seems to have the least impact.  What I mean by that is – who ISN’T tired?  Endometriosis, like many inflammatory diseases, causes severe fatigue.  And not just during flare ups, but all the time.  It’s exhausting fighting pain and inflammation on a regular basis.   If you’re experiencing extreme bouts of fatigue in conjunction with any of these other symptoms, you could be suffering from endometriosis.

+ Bonus Warning Sign

Another huge red flag that it might be endometriosis is if you’re experiencing excruciating pelvic pain and yet nothing shows up on any diagnostic imaging test.  As a personal testament, I can’t count how many times I’ve gone to the ER in an amount of pain way beyond my tolerance level (and I gave birth three times without drugs) only to be told they didn’t find anything wrong with me.  It is extremely frustrating and almost dehumanizing.

---

Suspect you have endometriosis?

The unfortunate news for women who experience these warning signs of endometriosis is that the only way to get a definite diagnosis is via laparoscopy.  I lost my uterus to stage IV endometriosis and yet nothing showed up on an ultrasound, CT Scan or MRI even as recent as a month prior to my surgery. Many women will undergo a hysterectomy in an attempt to treat the endometriosis, but it’s not always the best course of treatment as endometrial tissue can continue to grow, even without a uterus. 

Instead, a technique called excision is the preferred method for treating endometriosis, however only a handful of surgeons currently perform it successfully around the world.  It’s a meticulous surgery that requires the cutting away of endometrial tissue and patients often require more than one surgery to get it all.  Sometimes a hysterectomy needs to be performed in addition to excision of endometrial tissue, depending on how widespread the disease is.

Since the month of March is known as Endometriosis Awareness Month, it’s especially important to take some time to raise awareness and education about this excruciating condition.  Sadly, the women with this condition will be faced with having to fight for proper medical treatment and will likely be turned away from help several times before finding it.  It is an issue that is near and dear to my heart and my hope is to save as many women from having to go through the same traumatic ordeal that I did. 

---

Additional Resources:

• • Endometriosis.org – global platform for all things endo
  • EndoFound.org – Endometriosis Foundation of America 
  • Endometriosis.net– expert articles and peer support
  • WebMD Endometriosis Health Center 
  • Nancy’s Nook Endometriosis Education Facebook Group
  • Endometriosis Support Group on Facebook
  • Hystersisters.com – hysterectomy support