Endometriosis and Bleeding Between Periods: What You Need to Know

More celebrities than ever before are opening up about their experiences with endometriosis. Olympic gold medalist Tara Lipinski, actress Emma Roberts, comedian Amy Schumer, singer Monica, writer and activist Padma Lakshmi and writer and director Lena Dunham are just some of the high-profile people sharing their struggles. 

But despite this heightened awareness, there are still many unknowns about endometriosis, a disease that affects 1 in 10 women.

Severe pain, bleeding or spotting between menstrual periods, infertility or difficulty getting pregnant are a reality for many suffering from endometriosis. Understanding irregular bleeding and other symptoms can empower people to seek early diagnosis, receive appropriate treatment, and improve their quality of life.

This article explores the condition, exploring causes, symptoms, and treatments. Let’s start by going over the fundamentals. 

The Menstrual Cycle

Once they've entered their reproductive years, most women experience a monthly period. The menstrual cycle lasts approximately 28 days and consists of 4 stages:

1. Follicular phase: A cluster of ovarian follicles forms on the surface of the ovary, each containing an oocyte (immature egg). 
2. Ovulation: One of the follicles ruptures and releases the oocyte, which travels into the fallopian tube and becomes an ovum or egg. 
3. Luteal phase: The ruptured follicle evolves into a structure called the corpus luteum. The corpus luteum releases estrogen and progesterone, which thickens the endometrium to prepare for pregnancy.
• If pregnancy doesn’t occur, the corpus luteum withers and dies. As hormone levels drop, the endometrium collapses and prepares to shed during menstruation.
• In the event of pregnancy, the menstrual cycle is disrupted, and menstruation (your menstrual period) won’t occur.
4. Menstruation: The endometrium and unfertilized egg shed through the vagina during your menstrual period. This marks the beginning of a new cycle and is more commonly known as your period.

The menstrual cycle rarely runs like clockwork, and fluctuations are normal. But heavy bleeding outside your regular period is not normal.

By ‘heavy,’ we mean enough blood to require the use of menstrual hygiene products, like pads and tampons. Unexpected or unusual bleeding between periods is also called intermenstrual bleeding or metrorrhagia.

What Is Endometriosis?

Endometriosis is a condition where endometrial tissue grows outside the uterus, known as 'implants.' Endometriosis can cause pain, affecting approximately 10% of women of reproductive age, according to the American College of Obstetrics and Gynecologists (ACOG).

The most common areas to find implants are in the ovaries, fallopian tubes, and tissues around the pelvis. It’s very rare for implants to be found beyond the pelvis region.

Scar Tissue

"When endometriosis involves the ovaries, cysts called endometriomas may form," according to the Mayo Clinic. "Surrounding tissue can become irritated, eventually developing scar tissue and adhesions—bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other."

Endometriosis and Irregular Bleeding

Endometriosis may cause irregular bleeding and other symptoms due to the growth of endometrial tissue outside the uterus.

Diagnostic tests, hormonal therapies, surgical interventions, and lifestyle changes are available for managing endometriosis.

Regular checkups, tracking menstrual cycles, and preventive measures can help reduce the risk of worsening endometriosis symptoms people may experience.

Ever wonder "Why am I bleeding after my period"? We've got you covered.

What Causes Endometriosis?

Doctors don’t know the exact causes of endometriosis. But, there are a few reasons endometrial tissue might travel and grow outside the uterus, as outlined by Women’s Health and the Mayo Clinic.

• Menstrual flow issues: Sometimes, menstrual blood may flow up the fallopian tubes and into the pelvis—known as retrograde menstruation. When this happens, endometrial cells may stick to other organs and continue to grow.
• Genetics:  Endometriosis tends to run in families.
• Immune system problems: Women with endometriosis often suffer from immune system disorders and certain cancers.
• Hormones: Higher levels of estrogen are linked to endometriosis. This 'induction theory' suggests hormones cause stomach lining cells to transform into endometrial-like cells.
• Surgery: Endometrial cells may accidentally transfer to the abdomen during surgeries like C-sections (cesarean sections). This is sometimes called ‘surgical scar implantation.’
• Endometrial cell transport: Endometrial cells can move through the body by the lymphatic system or blood vessels.

Risk Factors 

As mentioned above, although the exact cause is unknown, it’s believed that endometriosis is an inherited condition. A global study published in the March 2023 edition of Nature Genetics identified a range of genes linked to heightened risk.

"This study involved the analysis of DNA from more than 60,000 women with endometriosis worldwide, in an unprecedented collaboration of 25 academic and industry groups contributing their data and time," said the paper's lead author Krina Zondervan, co-director of the Endometriosis CaRe Centre and head of the Nuffield Department of Women's & Reproductive Health, University of Oxford. "It has provided a wealth of new knowledge on the genetics underlying endometriosis, which will help the research community in their efforts to come up with new treatments and possibly new ways of diagnosing the disease benefiting millions of women worldwide."

There’s a laundry list of other factors that place you at a higher risk of developing the condition. Risk factors are generally linked to how much estrogen you’re exposed to in your lifetime.

Women are at a higher risk of developing endometriosis if they:

• Are in their late reproductive years and have never given birth
• Started menses at a very young age
• Enter menopause later in life
• Experience short menstrual cycles (fewer than 27 days)
• Experience heavy menstrual bleeding and long menstrual periods (longer than 7 days), and menstrual cramps (period pain)
• Have a low BMI (body mass index)
• Have a medical condition that affects menstrual flow
• Have reproductive tract abnormalities

Endometriosis is also linked to certain medical conditions, as outlined by Women’s Health. For example, allergies, asthma, autoimmune diseases, and fibromyalgia may increase your risk of endometriosis.

Symptoms of Endometriosis: Chronic Pelvic Pain and More

The main endometriosis symptoms are intense pelvic pain, painful and heavy menstrual bleeding (known as dysmenorrhea), and/or heavy bleeding between periods.

Symptoms of endometriosis include:

• Painful sexual intercourse
• Constipation or diarrhea
• Back pain, especially lower back pain
• Chronic pelvic pain
• Nausea and bloating
• Painful bowel movements
• Painful urination
• Extreme period pain
• Infertility and fertility problems

Symptoms can range from nonexistent to extremely severe. Yet, the degree of pain (such as pelvic pain) does not equal the severity of the condition itself. So, if you experience any of these signs and symptoms—no matter how mild—we recommend you seek treatment right away.

A Note on Infertility and Endometriosis

There is a very strong association between infertility and endometriosis. According to ACOG, around 40% of women with infertility also have endometriosis.

Endometriosis causes a lot of inflammation within the reproductive organs. The inflammation may harm the egg or sperm or prevent fertilization by blocking the sperm from getting to its destination (a.k.a. the egg.)

Rest assured, getting pregnant and having a successful pregnancy is still possible if you have endometriosis. Many people get pregnant and give birth with no complications. However, you should seek medical advice before trying to get pregnant.

Your doctor will likely advise you not to wait to get pregnant. This way, you may avoid any issues in case your endometriosis causes more damage to your reproductive organs.

Endometriosis: Diagnosis & Treatment

The diagnosis of endometriosis isn’t always straightforward. The symptoms (such as painful periods or irregular periods) are similar to those of pelvic inflammatory disease (PID), irritable bowel syndrome (IBS), and ovarian cysts. This often leads to misdiagnosis or confusion around diagnosis.

Diagnosis

When you visit your doctor, the first thing they'll do is perform a pelvic exam. They may also want to do an ultrasound if they feel anything unusual. These non-invasive exams check for abnormalities like cysts or scarring caused by endometriosis.

The only way to diagnose endometriosis is through laparoscopic surgery, according to Brigham and Women’s Hospital. This type of surgery involves a very thin instrument inserted into the navel. A tiny camera at the end of the scope lets the doctor examine the implants and even take some tissue for a biopsy.

Magnetic resonance imaging (MRI) is another method to test for endometriosis if you're going the surgery route to manage symptoms.

Treating Endometriosis

There’s good news and bad news when it comes to the treatment of endometriosis. The bad news is that there is no cure for endometriosis. 

The good news is that there are ways to manage and treat it to help relieve some of the severe symptoms. First and foremost, make sure you find a doctor you trust and feel comfortable with. Dealing with conditions of the pelvic organs and reproductive tract is always a sensitive matter.

Pain Management

As a first resort, your doctor will likely prescribe pain medications (e.g., ibuprofen) and non-steroidal anti-inflammatory drugs (NSAID) to help reduce inflammation, which may help those with mild endometriosis. Other medications that help lower estrogen levels may shrink the endometrial tissue. Some examples of these medications include:

• Hormonal contraceptives (such as birth control pills, for those not trying to conceive)
• Gonadotropin-releasing hormone (GnRH) agonist (for those trying to conceive)
• Aromatase inhibitors

Other simple treatments you may also try at home include using a heating pad on your lower abdomen and taking a warm bath. Many women find this helps relax their pelvic muscles and ease some of the pelvic or back pain.

Surgery

In more extreme cases, treatment options may include surgery. The most common type of surgery to treat endometriosis is ‘conservative surgery.’ This procedure involves surgery to remove the endometriosis tissue using a laparoscope, leaving your reproductive system intact. Your doctor will often recommend taking hormonal treatments in addition to the surgery to help reduce pain.

This type of surgery is a good option, especially for women who still want to get pregnant. It also helps avoid complications a hysterectomy (removal of the entire uterus) may cause down the road. Only in very rare and extreme cases will endometriosis need a hysterectomy.

Celebrities such as Amy Schumer, who had a hysterectomy and appendectomy to treat the condition in 2021, have shared their experiences with major surgery. On the docuseries The Checkup with Dr. David Agus, Schumer said of the experience, "You tell someone you get really bad cramps, and they're like, 'Oh, it's being a woman.' And you're like, 'No, it's irregular.' I've been in so much pain, you know, my whole life—not just the week of my period. It's during ovulation. I would hopefully get a good week a month where I wasn't in pretty significant pain, still trying to achieve, still trying to go through life. It's been really difficult."

Similarly, Lena Dunham had a total hysterectomy at 31 to treat endometriosis, which she revealed in an essay for the March 2018 issue of Vogue.

"I may have felt choiceless before, but I know I have choices now. Soon I'll start exploring whether my ovaries, which remain someplace inside me in that vast cavern of organs and scar tissue, have eggs. (Your brain, unaware that the rest of the apparatus has gone, in theory keeps firing up your eggs every month, to be released and reabsorbed into the cavern.) Adoption is a thrilling truth I'll pursue with all my might."

Potential New Treatment Options

Researchers in the U.K. are trialing a potential new treatment for endometriosis. If successful, dichloroacetate will be the first new class of drugs developed to treat the disease in 40 years, The Guardian reports, and the only non-hormonal, non-surgical treatment.

“We know women with endometriosis desperately want more treatment options and better ways to manage the often-debilitating pain that it causes,” said Lucy Whitaker, a clinical lecturer in obstetrics and gynecology at the University of Edinburgh, who led the research. “Our research so far shows promising results that dichloroacetate can make a huge difference. I hope our new trial will confirm this and give women hope that new treatments and a better quality of life are on the horizon.”

In Summary

It may be endometriosis if you experience bleeding between periods and heavy menstrual bleeding along with pain in your lower abdomen and pelvis area.

Abnormal or irregular bleeding could be a sign of severe conditions as well. So, if you experience any of the following, please visit your doctor ASAP:

• Heavy periods with a lot of blood clots and period pain or bleeding in between periods
• Abdominal pain or cramping
• Pain or a burning sensation when peeing
• Painful bowel movements
• Unusual vaginal discharge and/or redness and itchiness

If it turns out you have endometriosis, don't panic. While it may not be curable, it is treatable—especially if you catch it early.

Understanding the causes, symptoms, and available treatment options for endometriosis is essential for early diagnosis and effective management. Individuals with endometriosis can improve their quality of life and regain control of their health by incorporating preventive measures, seeking emotional support, and implementing coping strategies and lifestyle changes.

Frequently Asked Questions

What Color Is Endometriosis Bleeding Between Periods?

It can vary in color (like menstrual blood) but is typically dark red or brown, similar to old blood. This occurs because the blood has taken some time to exit the body and has oxidized, changing its color from bright red to darker.

However, it's important to note that the color of bleeding associated with endometriosis can vary from person to person and may not always follow this pattern.

If you are experiencing abnormal bleeding or have concerns about your menstrual cycle, it is advisable to consult a healthcare provider for a proper evaluation and diagnosis.

What Does Endometriosis Period Blood Look Like?

Endometriosis itself doesn't necessarily cause distinctive changes in the color of period blood. However, some people may experience heavier menstrual bleeding, which could result in larger clots or more significant variations in blood color during their periods.

It's important to remember that the color of period blood can be influenced by various factors, including your overall health, hydration, diet, and hormonal fluctuations, and may not always be directly related to endometriosis.

If you have concerns about your menstrual cycle or suspect you may have endometriosis, it's a good idea to consult with a healthcare provider for a proper evaluation and diagnosis.

Do You Bleed Randomly With Endometriosis?

Endometriosis may cause heavy or irregular bleeding. But if you experience bleeding or spotting at varying times in your cycle, it may be due to other gynecological issues or health conditions.

Consult with a healthcare provider for a proper evaluation and diagnosis. Various factors can cause abnormal bleeding, and a healthcare professional can help determine the underlying cause and provide appropriate treatment.

Can Hormonal Therapies Help Manage Endometriosis Symptoms?

Yes, hormonal therapies are commonly used to help manage the symptoms of endometriosis. These treatments aim to alleviate pain, reduce inflammation, and improve the quality of life for individuals with endometriosis.

Some of the hormonal therapies that may be used to manage endometriosis symptoms include birth control pills, progestin-only treatments, Gonadotropin-releasing hormone (GnRH) agonists and antagonists, aromatase inhibitors, and continuous or extended-cycle hormonal therapy.

The choice of hormonal therapy depends on various factors, including the severity of symptoms, the desire for future fertility, and individual patient preferences.

It's essential to consult with a healthcare provider specializing in treating endometriosis to determine the most appropriate hormonal therapy and management plan for your specific situation. Additionally, it's important to discuss potential side effects and risks associated with these treatments with your healthcare provider.

What Are Some Coping Strategies for Managing Endometriosis-Related Pain?

Managing endometriosis-related pain can be challenging, but several coping strategies and lifestyle changes can help improve your quality of life and reduce discomfort.

Remember that what works best for one person may not work for another, so it may take some trial and error to find the most effective strategies for your situation.

Some coping strategies for managing endometriosis-related pain include over-the-counter pain relievers like ibuprofen or acetaminophen, heat therapy (such as a heating pad or warm compress, hot bath or warm shower), relaxation techniques (such as deep breathing, meditation, yoga, or tai chi), physical therapy, dietary changes, exercise, acupuncture, support groups, hormonal treatment, surgery, and mind-body techniques (such as biofeedback and cognitive-behavioral therapy, a.k.a. CBT).

It's essential to work closely with a healthcare provider specializing in treating endometriosis to develop a personalized pain management plan that addresses your specific symptoms and concerns. Additionally, don't hesitate to seek emotional support from friends, family, or a therapist, as living with chronic pain can significantly impact your mental well-being.

Written by Jane Flanagan — Updated on Oct. 22, 2023.

We hope you found this post informative — but remember: we’re not doctors and this post is not medical advice! While all posts are fact-checked and well researched, we always recommend you chat with your doctor about any questions or concerns you might have regarding a medical condition. We’re here to support and educate, but never with the aim of disregarding professional medical advice you’ve been given. Phew, now that that’s out of the way, you can go on living unapologetically free in period underwear.