5 Things You Should Know About Living with Endometriosis

Guest post for The Missing Link.

Author: Camille Prairie , on behalf of Write Medicine and the Write Medicine Podcast.

Did you know it takes an average of 10 years for a woman with endometriosis to be correctly diagnosed? Endometriosis is estimated to affect 10% of women globally, yet it remains the “missed disease” in many ways. Research often refers to endometriosis as the “missed disease” due to the knowledge gaps surrounding it.

Research suggests that historical ideas about menstrual cycles and women’s pain continue to inform our ideas about endometriosis and similar diseases today. Namely, the idea that women are accountable for their illnesses, specifically reproductive illnesses.

However, this simply isn’t true. So, what can women with endometriosis do to get the treatment they need? One thing we can do is be our own best patient advocates. Discussing what we know about endometriosis can help women speak up for the treatment they need. Today, let’s learn what endometriosis is, how to manage living with endometriosis, and debunk some common misconceptions.

What is Endometriosis?

Endometriosis is a long-term or chronic condition that occurs when the lining of the uterus, also called the endometrium, starts to grow outside the uterine wall. The lining of the uterus thickens each month after being shed during your regular menstrual cycle.

Women who do not have endometriosis experience that growth happening in the uterine wall as the body prepares for the possibility of pregnancy again.

If you have endometriosis, the lining of the uterus grows in other places. It often grows on other reproductive organs, like the ovaries and fallopian tubes. However, it can also spread to the bowel, bladder, or abdominal cavity.

The abnormal growth usually sheds each month during your menstrual cycle. This can cause much more pain than a menstrual period does in someone without endometriosis.

Even if there is no pain, endometriosis can also lead to scarring, organ damage, and infertility. Pelvic pain is the most common symptom of endometriosis. Because many conditions can cause pelvic pain, endometriosis often goes misdiagnosed or overlooked.

5 Tips for Managing Your Endometriosis

1. Use Effective Pain Management Techniques

Effective pain management is different for everybody. However, there is no need to suffer through pain. Try over-the-counter pain medications like Ibuprofen or any non-steroidal anti-inflammatory drug. You can also try heating pads or alternate cold packs with a heating pad when you’re in pain.

Long-term pain management often requires adjusting medicines and dosages. Work with a healthcare provider who understands your medical background and can work with you to ensure that long-term use of certain medications isn’t harmful.

2. Experiment with Diet Modifications

Some women with endometriosis benefit from trying an anti-inflammatory diet. This diet avoids certain foods, including red meats, commercially baked goods, trans fats, and anything high in sugar.

Consider consulting a nutritionist or doctor to see if this diet will support your overall health needs. When considering whether or not to try an anti-inflammatory diet, remember that it is a supplement for other treatment methods, and keep in mind time and resource limitations.

3. Exercise Regularly

Research has yet to conclude whether regular exercise is specifically beneficial for women with endometriosis. However, research shows that exercise has a huge impact on our mental health and physical health. It improves cognitive ability and heart health and increases longevity and overall happiness. Consider engaging in a form of exercise you enjoy regularly without pushing yourself on days you’re experiencing pain.

4. Reduce Stress When Possible

There’s a well-documented correlation between endometriosis and higher-than-normal stress levels. While it’s not always possible to reduce every source of stress in our lives, consider areas where you can mitigate some stress. One helpful technique for handling high-stress levels is simply taking a few moments every day to be mindful and present at the moment.

5. Find a Strong Support System

Anyone coping with a long-term condition like endometriosis can’t handle it alone. Physical pain takes an emotional toll. Share what you’re going through with a trusted friend or partner, and if possible, connect with other women living with endometriosis. Consider asking your doctor if there are support groups available.

How Endometriosis and Other Gynaecological Conditions Can Affect Fertility

Living with endometriosis often affects a woman’s ability to become pregnant. Scar tissue on the reproductive organs is a common way endometriosis affects fertility. However, there are some other ways it can impact your ability to become pregnant:

●????? Endometrial tissue can grow into the muscular part of the uterus, causing a condition called adenomyosis

●????? The condition can affect hormonal balance

●????? Embryo implantation can become inhibited due to physiological or hormonal changes

●????? The quality of the eggs may decrease

Gynaecological conditions like polycystic ovarian syndrome(PCOS), pelvic inflammatory disease(PID), and primary ovarian insufficiency(POI) can also affect fertility in similar ways. Each of these diseases either affects the anatomy of the reproductive organs or disrupts the normal level of hormones in the body needed for the reproductive organs to function normally.

Women with endometriosis and other gynaecological conditions can often get pregnant, however.

The most successful way for someone with endometriosis to get pregnant is with minimally invasive surgery that can remove endometrial tissue that has grown in areas outside of the uterine wall.

Other gynaecological conditions can be treated with hormone replacement therapy and fertility treatments. You should see a gynaecologist who specialises in helping women with fertility issues get pregnant when you’re ready to start trying so that you can receive the best treatment for your specific condition.

Sometimes, gynaecological conditions — including endometriosis — do lead to infertility. For example, 10% of women with pelvic inflammatory disease become infertile due to scarring.

It’s not probable, but a gynaecological condition may lead to infertility. In these cases, strong support systems, exploring other ways to start your family, and a healthy time for grieving are essential.

Common Misconceptions About Gynaecological Conditions

Sadly, there are still a lot of common misconceptions about gynaecological conditions. Let’s clear some of those up today.

Gynaecological Conditions Equal Infertility. This is essentially not true. However, many girls and women are not told that they still have a decent chance of getting pregnant if they want to, even though they have endometriosis, PCOS, or other conditions. It’s important to know that you can get pregnant while having a gynaecological condition - it just may take a little more work.

Severe Pain is Normal. Severe pain is not normal. The refrain that menstrual pain is just “part of being a woman” is commonplace. However, any pain that interferes with your day-to-day life is worth being treated and visiting a doctor about.

Sex and Fertility Issues Are Your Fault. This is a complete misconception. When it comes to sexual issues, like low libido, pain, or vaginal dryness, we can consult our gynaecologists. We aren’t alone in navigating the sexual aspects of our lives. Additionally, if you live with a gynecological condition, and are struggling to get pregnant, remember that you’re doing the best you can.

Also, keep in mind that it takes two people to make a baby, and men can have fertility issues, too. Remember that it isn’t your fault if you can’t get pregnant. It’s no one’s fault. It just is; other options are available to you and your partner.

The Bottom Line

Endometriosis and reproductive system conditions like PCOS, PID, and POI are chronic conditions that can be effectively managed. However, due to the lack of information surrounding endometriosis in particular and women’s reproductive health as a whole, women must advocate for their treatment needs with a doctor who is willing to truly listen.

By talking more about what it’s like living with endometriosis, we can help reduce the stigma of shame and secrecy that’s surrounded it for so long and continue to raise standards of care for women everywhere.