Why Endometriosis is Misdiagnosed & What You Can Do About it

1 in 10. This is the number of girls and women in the U.S. that suffer from endometriosis.

176 million. This is the number of women worldwide who are affected by endometriosis.

12 years. That’s the average time it takes to get a proper diagnosis for endometriosis.

These numbers are alarming for many reasons. With a disease as common and disruptive to quality of life as endometriosis, there shouldn’t be as many myths or taboos surrounding it. It also shouldn’t take 12 years to get a diagnosis, only to have the same diagnosis treated haphazardly. This lack of research and time invested into reproductive health issues is holding us back from finally disrupting the taboo and finding solutions and cures.

Ally Niemiec, who shared her traumatic endometriosis story on The Huffington Post, said:

I was only diagnosed because the adhesions caused ovarian torsion which required emergency surgery. Fourteen years without a diagnosis. I used to miss school because my periods were so bad. Another interesting layer to this is that I had four laparoscopic surgeries from my diagnosis until my final excision and hysterectomy. My surgical records do not mention any of the extensive adhesions or bowel involvement. So when I woke up from surgery and I was still in so much pain—they told me I was crazy.

But there is no way that my adhesions went rampant in six months, so that means they were either ignored or unnoticed. My surgeon who did my last surgery trained under one of the top excision specialists. I don’t think many endo surgeons are trained properly, and I think this causes high failure rates in surgery. I think it’s ignorance. They think they know how to treat endo, but they do not.

The big takeaway from my experience is that if my endo had been diagnosed much sooner, the damage wouldn’t have warranted a hysterectomy.

Stories like Ally’s are e, which is why it’s so important for us to take a look into endometriosis—what it is, why it’s misdiagnosed so frequently, and what you can do to get answers and stay in control of your reproductive health.

What is endometriosis?

Your uterus is lined with a tissue called the endometrium. When your ovaries release an egg, it’s either fertilized or it dissolves into your uterine lining. Your period occurs when your uterus sloughs off this lining and grows a new one. In people with endometriosis, that tissue is found outside of the uterus—usually in the ovaries, fallopian tubes, and ligaments that support the uterus. It’s shed off in the same way that regular endometrium is, except because it isn’t in the uterus, it has no way of leaving the body. It builds up and turns into growths and lesions, causing chronic pain, infertility, adhesions, and bowel problems.  

From having sexual intercourse to attending school or work to engaging in social activities, endometriosis affects every part of a woman’s life. Let’s take a look at why endometriosis is misdiagnosed and what you can do about it.

Why is endometriosis misdiagnosed?

You’d think with a disorder as common as endometriosis there would be more doctors well-versed in diagnosing and treating it. Unfortunately, that’s not the case. The only accurate way to diagnose endometriosis is with a laparoscopy, an expensive and invasive procedure. Otherwise, doctors are using visual inspection of the vagina to try and diagnose—a practice that doesn’t typically work because there aren’t always visible signs in the vagina and the doctor would need to know what to look for. Even if you were to have a laparoscopy done, the diagnosis is highly dependent on the surgeon’s ability to identify the signs of endometriosis. If they don’t recognize the signs and don’t take a biopsy, you still might not get a proper diagnosis.

It’s not just inadequate diagnostic methods that result in undiagnosed endometriosis. Many women believe that their symptoms are “normal” and never even go to the doctor. This can be partially blamed on the notion that pain accompanying your period is just the way it is (hint: it’s not). Other myths surrounding endometriosis are also to blame, as is the lack of medical research and education on the disease. Some women do seek help from their doctors when their period pains get to be too much. The result? Their doctor telling them that their symptoms are a normal part of their menstrual cycle and advising to take over-the-counter painkillers or hormonal birth control to treat the symptoms (which can help but it’s often temporary relief).

No wonder it can 12 years (or 14 in Ally’s case) to have your endometriosis acknowledged.

What can you do if you think you have endometriosis?

There are really two options here: accept what your doctor tells you and try to stifle the symptoms of endometriosis with birth control (and possibly end up in a situation like Ally—needing a hysterectomy as a last resort to treat your endo) OR you can take control of your reproductive health and demand answers.

Start by getting to know your body. The following symptoms point to endometriosis:

  • Intense menstrual pain
  • Heavy or long periods
  • Spotting between periods
  • Painful urination or bowel movements
  • Painful sexual activity
  • Lower back pain during your period
  • Painful orgasms
  • Migraines, allergies, or fatigue that get worse during your period

If you experience any or all of these symptoms, visit your doctor. Pay attention to other circumstances that could be contributing to these side effects. Anytime something feels “off” about your body, it’s worth looking into.

Advocate for your health

When you go to your doctor with concerns, be adamant about finding the root of the problem. If they perform a visual inspection of your vagina to look for endometriosis, don’t settle for an answer that doesn’t satisfy your concerns. If your doctor wants to try hormonal birth control as a treatment, ask for other options. Some other diagnostic tests you can ask for include:

  • An ultrasound
  • MRI scans
  • CA125
  • Laparoscopy (can be used to diagnose and treat)

But just asking for more tests and better answers doesn’t always work. Otherwise, the misdiagnosis of endo wouldn’t be as commonplace and millions of women wouldn’t be suffering. If your doctor is not giving you the information you need to feel confident in your diagnosis, ask for a second opinion from an endo specialist. Actually, get as many opinions as you need to until you find an answer and a solution for your endometriosis. Do your own research as well. Studies on endo are helpful in gaining insight into your condition (and don’t be afraid to show them to your doctor).

The only real way to end the myths that endometriosis symptoms are “normal” is to challenge the way things are done in the medical community. At the first sign of symptoms, insist that your health be taken seriously. Every step of the way, ask for more research, more tests, and more answers. It’s likely to be a long and frustrating process but you—and your reproductive health—are worth it. 

Featured image by Júlia Pavin

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