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10 Things You Might Not Understand If You Don't Have Endometriosis

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Those with endometriosis know all too well what it’s like to live with this life-changing disease. However, it can be difficult to understand the impact endometriosis can have on a woman’s life if you have never experienced it yourself.

Here are 10 things that might help you understand endometriosis a little more.

1. Endometriosis isn’t just a bad period.

Endometriosis is an all-encompassing disease. It isn’t just a bit of pain while you’re on your period. Endometriosis can affect every single part of your life. It can cause problems every day in your reproductive life and can continue to do so after menopause.

2. The pain from endometriosis can affect you at any time – not just during your period.

Some might only get pain while they are on their periods, others will be in pain every day. You might be feeling good and then have a sudden onset of pain. Or you might have had a busy day and the next be in pain again. Sometimes you can predict when your pain will be worse but, generally, endometriosis is totally unpredictable.

3. The pain isn’t always just in your abdominal area.

Like period pain, the pain of endometriosis is felt in your abdominal area. But, unlike period pain, the pain endometriosis causes can also radiate to just about every other part of your body. This includes your back, legs, chest, neck, shoulders and arms. It can also cloud your mind and make it hard to concentrate or focus.

4. Endometriosis can affect you both physically and mentally.

Endometriosis can interfere with so many different aspects of a woman’s life. The pain alone can make you miss time from work, miss out on a social life, affect relationships. But, endometriosis can make you feel very isolated and you may feel like your body is against you. Anger, frustration, sadness and fear are just a few of the emotions that can affect your mental health. Depression is common in those with endometriosis.

5. Endometriosis will affect every woman differently.

Endometriosis can be found anywhere from the vulva to your brain – and everywhere in between. Because of this, even if you find two women with endometriosis in the same locations, the likelihood they will be experiencing the exact same symptoms is relatively slim. Pain is the main symptom of endometriosis and will be felt by almost everyone, but other symptoms like pain during or after sex (dyspareunia) and infertility might not affect everyone. You could have also been diagnosed with stage I (mild) endometriosis but be in more pain than someone with stage IV (severe) endometriosis.

6. Similarly, there is no single medication or treatment that will work for everyone.

Because we all work differently, it makes it difficult to find a treatment that will help us cope with the symptoms of endometriosis. Unfortunately, treatment is rarely as simple as taking a few painkillers. More times than not, what works for one person, won’t work for another. Treatment options come under three categories: surgery, hormone treatment or pain relief, and may include medications also used for cancer treatment. Treatments are not easy on our bodies and coping with the side effects of them can sometimes be as difficult as coping with endometriosis itself.

7. Endometriosis isn’t easy to diagnose.

Diagnosis, on average, can take up to seven and a half years. Endometriosis has a variety of symptoms commonly associated with other illnesses which makes misdiagnosis common. Not only do we have to try to make our doctors understand something neither one of us can see, but there is no one-stop blood test that can confirm or deny the disease. The only way to diagnose endometriosis is through invasive surgery which can create complications in itself.

8. There is no cure for endometriosis.

At some point post-diagnosis, many of us will be told that something or other will cure endometriosis. Hysterectomy, pregnancy, changes to your diet, yoga… The list goes on! Unfortunately, there is (currently) no cure for endometriosis. However, these options may bring relief for some – just not everyone.

9. You can develop endometriosis after having a child.

Although the majority of women with endometriosis may be told that pregnancy can cure endometriosis, for many, their endometriosis will come back just as bad, if not worse, post-pregnancy. There are also some women who will only develop the symptoms of endometriosis after having a child.

10. Endometriosis is inside our bodies – therefore, you can’t see it.

As with the common cold, endometriosis is invisible. Please keep this in mind when we speak out about the disease. Although we might look OK, we have usually had to take a variety of medications before we even begin our day.

This post originally appeared on Endometriosis News.

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Thinkstock photo via Andry5.

Originally published: November 15, 2017
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