5 Things No One Tells You About Endometriosis

It’s estimated that 1 in 10 women globally has endometriosis, does that stat surprise you? 

Endometriosis is a condition that causes tissue commonly present in the lining of the womb to grow in other places - such as the ovaries or fallopian tubes. Each month, these cells react in the same way as those in the womb; building up and breaking down and bleeding, but the blood has no place to go. This commonly causes inflammation and pain in your pelvic region, lower back, or stomach that intensifies during a menstrual period. There is currently no known cure for endometriosis, but there are ways to help control symptoms through healthy lifestyle interventions, which we’ll share more about at the end of this post. 

When we spoke to our community ahead of endometriosis awareness month, we found that some of the more common symptoms of endometriosis were widely known, but not everything is public knowledge – especially those not-so-nice facts about the pain of endometriosis and what it means for fertility and pregnancy. That’s why for Endometriosis awareness month we’re sharing… 

5 things no one tells you about endometriosis: 

1. Diagnosis can be really difficult 

Despite 1 in 10 women being affected with endometriosis, it’s a worldwide issue for women to get a diagnosis and often diagnosis doesn’t happen until women are in their 30s and 40s. Largely because symptoms, experiences, and severity can vary so widely from person to person. In the UK, the diagnostic delay is 8 years. In Austria and Germany, it’s more than 10 years on average. While in the USA, it can go more than 11 years undiagnosed. 

This means that there is also a delay in receiving effective treatment for managing endometriosis symptoms.

2. There will be pain

With endometriosis, the tissue similar to the lining on the inside of your uterus or womb grows outside of your uterus or womb. These growths may swell and bleed in the same way the lining inside of your uterus does every month during your menstrual period. Now, we all experience some form of PMS but the pain associated with endometriosis is often strong enough to stop you from completing your normal daily activities, and can worsen when having sex, urinating, and during bowel movements. Swelling and pain are caused by the tissue growing and bleeding in areas where it cannot easily get out of your body. To add to that, women with endometriosis also often have heavy and irregular flows. 

These growths can also cause other problems such as: 

• Blocking your fallopian tubes when growths cover or grow into your ovaries. Trapped blood in the ovaries can form cysts.

• Inflammation (swelling)

• Forming scar tissue and adhesions (type of tissue that can bind your organs together). This scar tissue may cause pelvic pain and make it hard for you to get pregnant.

• Problems in your intestines and bladder

3. An endometriosis diagnosis doesn’t mean infertility 

Endometriosis doesn’t necessarily cause infertility but it can be associated with fertility problems. As with many gynecological and endocrine (hormonal) conditions that can impact your chances of conceiving, the way that endometriosis impacts fertility can vary greatly from person to person. And, like so many conditions related to women's health, it's... complex.

It’s currently estimated that up to 70% of women with endometriosis may get pregnant spontaneously. Generally, though, endometriosis is associated with a slightly longer time to conception, and this usually increases with the severity of the endometriosis. For some perspective, women have around 15 to 20% possibility of becoming pregnant every month, but those with endometriosis can generally be closer to 2 to 10%. This is because increased severity is associated with greater amounts of scar tissue, and that's what causes pain. And the more scar tissue you have, the higher the chance of your egg being trapped in your ovaries or unable to move down the fallopian tube and into your uterus.

However, that doesn't mean you will struggle to conceive with an endometriosis diagnosis. It’s estimated that anywhere from 30-50% of women with endometriosis will have difficult conceiving, and even women with the most severe form of the condition can still get pregnant and give birth to happy, healthy babies! Research has shown that most women with mild endometriosis have similar fertility rates to women without the condition.

4. You can have a healthy, happy pregnancy with endometriosis

It's important to know that endometriosis-related complications during pregnancy are rare and there’s not an increased risk of birth defects associated with the condition. 

There is debate around whether complications in the later stage of pregnancy complications are increased due to endometriosis or not. But again, there’s not enough research to substantiate any evidence.

As you might know, miscarriage occurs in around 1 in 5 pregnancies, regardless of whether a woman has endometriosis or not. If you have endometriosis, research shows that the likelihood of miscarrying increases to 1 in 4. However, it’s very important to understand that studies around endometriosis and miscarriage are often inconclusive and results vary greatly - so more research is definitely needed.

Pregnancy risks with endometriosis:

Findings suggest that women with endometriosis are 33% more likely to give birth prematurely, which is typically associated with lower birth weights for baby and a greater incidence of developmental issues.

There is also an increased risk of a condition called placenta previa where the placenta attaches to the bottom of the uterus at the opening of the cervix instead of at the top or side of the uterus. Your doctor or midwife will be monitoring this throughout your pregnancy and will help you manage it accordingly, ensuring a safe and healthy experience for you and baby.

Being diagnosed with endometriosis often feels like adding another level of unpredictability to the complex and, at times, scary world of motherhood. But we want you to understand that, even with the risks we've discussed here, there are countless examples of women with endometriosis who have been able to conceive naturally and give birth to healthy babies, and there are treatment plans that can help if you are struggling. 

5. Your body isn’t the enemy, and there are ways that you can take control

We know that an endometriosis diagnosis can feel like a life sentence, but once you know that's what you're dealing with there are a number of ways that you can take back control of your body and ease your pain.

There are some short-term methods of pain relief such as using heat pads on your stomach or taking a warm bath when symptoms are particularly bad, and some women have found acupuncture to be helpful with pain relief as well. More interestingly, research has pointed to the importance of diet and exercise in alleviating symptoms of endometriosis.

Food and diet

Studies have suggested avoiding the trans fat in fried, processed, and fast foods, as well as avoiding red meat, gluten, caffeine, and alcohol can help lessen the pain and growth of endometriosis. Instead, here are some foods to love:

• Fibrous foods such as fruit, vegetables, legumes, and whole grains

• Essential fatty acids like salmon, sardines, herring, trout, walnuts, chia, and flax seeds

• Iron-rich foods such as dark leafy greens, broccoli, beans, fortified grains, nuts, and seeds

• Antioxidant-rich foods found in colorful fruits and vegetables, such as oranges, berries, dark chocolate, spinach, and beets

• Consider supplementing your diet with zinc, vitamins A, C, and E -- but be sure to talk to your doctor before beginning any supplementation plan, especially if you're TTC, pregnant, or breastfeeding

Exercise

Some women find that high-impact exercises and traditional core routines (like sit-ups and crunches) exacerbate abdominal pain, especially while on your period. If you find certain workouts heighten your pain, please be sure to skip them. We always preach listening to your body above all else!

However, if you feel able to, maintaining a regular exercise routine can really help manage endometriosis symptoms, as we also know that regular exercise is proven to:

• Boost your mood

• Ease pain and inflammation

• Reduce stress

• Improve sleep quality

Try yoga and bodyweight exercises that relax, lengthen, and strengthen your pelvic floor, abdominal wall, and hip flexors.

Symptom tracking

Lastly, it's important to engage in frequent and careful monitoring and tracking of your symptoms. This is true if you have not been diagnosed with endometriosis but suspect you may have the condition, and it's true if you are managing endometriosis through your conception journey and during pregnancy to check for any of the possible complications. 

Resources and support for endometriosis diagnosis & care

• UK: Endometriosis UK

• US: Endometriosis Foundation of America

• Australia: QENDO

• New Zealand: Endometriosis New Zealand

Find more country-specific support here.

Have a question or need some help finding support? Let us know in the comments.

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