Everyone Assumed It Was Just A Painful Period

The misdiagnoses and wide array of symptoms may contribute to how long it takes healthcare professionals to diagnose this condition.

In Marthas case, it was almost 3 years between beginning to pursue a diagnosis and finally getting one. For Alma and Lisa, it took well over a decade to receive a formal diagnosis.

I was formally diagnosed with around the age of 30, despite the fact that Id had extremely painful periods since the age of 14, Alma told us.

For her part, Lisa said: I first sought care for the debilitating nature of my periods when I was around 16, and did not receive my diagnosis until I was 25. Its hard to say when my symptoms officially started, but looking back, I would guess that I experienced them for well over 10 years before being diagnosed.

Yet the complexity of endometriosis symptoms is only half of the story when it comes to the delays in diagnosing the condition.

When women seek help for chronic pain associated with or triggered by their periods, they often hear that this experience is normal, just a bad period that they have to find ways to cope with.

This was Almas experience, which she recalled with frustration. Even upon diagnosis, she said:

Almas experience ties in with worldwide reports of a gender pain gap the phenomenon whereby women report more instances of chronic pain than men but are less likely to be offered timely pain relief by healthcare professionals.

Getting Pregnant With Endometriosis

Many women with endometriosis don’t have trouble getting pregnant. But laparoscopic surgery can improve the pregnancy rate of women who have moderate to severe endometriosis. In vitro fertilization is an option if infertility persists. The sperm and egg are combined in a lab and the resulting embryo is implanted into the uterus.

How Women Bipoc Lgbtqia+ Peoples Pain Is Downplayed By Healthcare Providers

Downplaying the concerns of women is a broadly recognized problem within the realm of healthcare. Compared to men, both doctors and nurses prescribe less pain medication to women post-surgery. This occurs, despite reports of pain being both higher and more frequent among women.

According to a study from the University of Pennsylvania, women wait an average of 16 more minutes compared to men to receive pain medication in the emergency room. They are also more likely to have their pain dismissed as emotional distress. Pain dismissal is no stranger to people with chronic illness. A large survey was conducted for women who experience chronic pain. The results show that 84% of women with chronic pain feel discriminated against based on their sex when seeking care.

It is not just women who are at risk of receiving less than optimal healthcare. In the United States, in particular, disparities in health and healthcare take a toll on non-white and non-CIS populations as well.

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In the United States, healthcare does not look the same for all races and ethnicities. Minorities are less likely to receive optimal treatment compared to whites. The diversity of the workforce within healthcare is not representative of the diversity in the population.

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Endometriosis Doesnt Only Affect Women

Endometriosis can affect anyone who menstruates, regardless of their gender identity. Not only does Bowyer, who is nonbinary, have to bear the brunt of endometriosis as a condition, but they also deal with the misconception that endometriosis is a gendered illness. People often think of endometriosis as a womans disease, which it isnt. Endometriosis has definitely contributed to my dysmorphia, Bowyer says.

People, including doctors, have messed up Bowyers pronouns and made assumptions, like that Bowyer wants to get pregnant at some point and might experience a break from endo symptoms as a result. Ive never wanted a child by birth, says Bowyer. such a weird place to be in.

The Medical Minute: Endometriosis Beyond Painful Periods

If youre among the 10% of women who have endometriosis, you know that the inflammatory condition can cause severe pelvic pain. While theres no way to prevent getting the incurable disorder, a wide range of treatment options are available to help manage the pain and related complications.

Dr. Kristin Riley, interim chief of the Division of Minimally Invasive Gynecologic Surgery at Penn State Health Milton S. Hershey Medical Center, and her team see patients for complex, benign gynecological problems, including abnormal bleeding, fibroids and ovarian cysts. But an overwhelming majority of their patients come in with chronic pelvic pain caused by endometriosis.

The condition causes tissue that normally lines the inside of the uterus the endometrium to grow outside of it instead. This abnormal tissue can spread to the fallopian tubes, ovaries and pelvic area. It can also extend to the bowel, bladder, rectum, appendix and diaphragm. The condition can cause infertility.

Varying symptoms

The most common symptom of endometriosis is painful periods, Riley said. But how can women know whats not normal menstrual pain?

Were talking about the kind of pain that doesnt go away with a simple treatment, like over-the-counter medications, Riley said. Pain that keeps you from going to work or school or from participating in social activities.

Endometriotic pain can come and go, Riley said. Some people get painful flares and then get relief for a long period of time.

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How Do I Know If I Have Endometriosis

The gold standard to diagnose endometriosis is to have laparoscopic surgery. A laparoscopy will allow your doctor to view your internal organs and remove any visible implants or scar tissue.

“The gold standard for endometriosis diagnosis is laparoscopic surgery,” says Jeffcoat. “However, a thorough physical exam by an expert in endometriosis can point to a strong likelihood of endometriosis.”

Although endometriosis is characterized by pain, some individuals may feel no pain at all sometimes referred to as “silent endometriosis.” In other cases, having infertility issues may also lead someone to discover that they have endometriosis. Because endometriosis symptoms vary in every individual, it’s important to listen to your body.

Patient perspective:

“If you suspect you have endometriosis, track everything,” says Lipnicki. “Even if you aren’t sure if a symptom relates to potentially having endometriosis. In terms of specifics, emphasize the stabbing, labor-like pains.”

How Do I Explain Endometriosis Pain To A Doctor

The number one way to explain endometriosis to your doctor is to be open and honest about everything that’s going on with your body. If he or she doesn’t listen, find a new doctor. It took 14 years and seven different specialists before I finally found a doctor who not only listened to me but believed me.

Despite the fact that endometriosis affects one in 10 individuals worldwide, the average endometriosis diagnosis takes six to 11 years. Years of misdiagnosis and nonchalant doctors can take a toll on your mental health. For a short time, I actually considered that the pain I was feeling was all in my head. This is why it’s so important to listen to your body and advocate for yourself.

“Patients need to advocate for themselves, and especially if they have multiple sources of pain,” says Jeffcoat. “It is well known that endometriosis excision surgery will fully remove the endometriosis in the area, but if the pain is also felt elsewhere, patients need an interdisciplinary team of specialists working together to manage the other areas of pain.”

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Combined Surgical And Medical Treatment

Medical treatment before or after surgical excision of endometriosis is theoretically advantageous. Unfortunately, fertility is not enhanced and fertility treatment may be unnecessarily postponed. Initiating medical treatment before surgery decreases endometriotic lesions, reduces vascularity, reduces blood loss and decreases the invasiveness of surgery . Postoperative medical treatment eliminates lesions that were inoperable due to their location or microscopic size. Women who donât experience a decrease in pain with surgical or medical treatment and no longer desire a pregnancy have the option of hysterectomy and oophorectomy . In mild or moderate cases of endometriosis, one ovary may be surgically removed, leaving one ovary to maintain function, although the patient will not experience the same amount of symptom alleviation as with bilateral oophorectomy. Patients who undergo a bilateral oophorectomy should be treated with hormone replacement therapy as the benefits outweigh the risk of endometriosis recurrence .

When To Seek Professional Help

Ovulation pain does not usually require medical attention. However, you should seek help for ovulation pain if:

• The pain is new or worsening
• The pain lasts longer than 48 hours
• The pain is severe or interferes with daily functioning
• The pain also occurs at other times of the month
• The pain is accompanied by nausea, vomiting, or diarrhea
• You have other symptoms of endometriosis, such as painful, heavy periods

Your first call should be to your primary care doctor or OB/GYN. They can perform an exam and let you know if they suspect something more serious than normal ovulation pain. If your doctor suspects endometriosis or another health problem, they may refer you to a specialist.

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Maintenance Of Ectopic Endometrial Lesions

Endometrial implants have estrogen receptors . The lesions respond to cyclic levels of hormones demonstrated by their growth and proliferation as estrogen produced by developing follicles increases. Endometriosis regresses after oophorectomy or menopause, when the levels of estrogen are decreased, but will relapse when a woman is treated with estrogen replacement therapy . This phenomenon has established endometriosis as a disease that is estrogen-dependent .

Prostaglandins, such as PGE2 and PGF2α, are secreted in significantly higher levels from eutopic and ectopic endometrial cells in women with endometriosis . Higher levels of PGE2 increase estrogen biosynthesis by creating a positive feedback system favoring continuous estrogen production .

Does Endometriosis Go Away After Menopause

For some women, the painful symptoms of endometriosis improve after menopause. As the body stops making the hormone estrogen, the growths shrink slowly. However, some women who take menopausal hormone therapy may still have symptoms of endometriosis.

If you are having symptoms of endometriosis after menopause, talk to your doctor about treatment options.

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Further Problems Caused By Endometriosis

One of the main complications of endometriosis is difficulty getting pregnant or not being able to get pregnant at all .

Surgery to remove endometriosis tissue can help improve your chances of getting pregnant, although there’s no guarantee that you’ll be able to get pregnant after treatment.

Surgery for endometriosis can also sometimes cause further problems, such as infections, bleeding or damage to affected organs.

If surgery is recommended for you, talk to your surgeon about the possible risks.

Elusive Treatments And Management

There are many misconceptions about treatments and causes as well. Rishe told MNT that one misconception is that pregnancy or hysterectomy are treatments for endometriosis.

Another major misconception is that only affects those their childbearing years, when, in reality, many adolescents and teens show signs of endo, she noted.

Treatments for the management of endometriosis do exist, although they are far from perfect.

After receiving a diagnosis, women may be offered an excision surgery, which will remove the abnormal growths of endometrial-like tissue. This excision does not stop the tissue from growing back, however, and repeated surgeries may follow to keep removing these growths.

Doctors may also offer an endometriosis management plan, depending on how much pain and bleeding a person experiences as a result of endometriosis.

In the first instance, doctors may prescribe the same drugs they would advise for the management of menstrual cramps: , which are over-the-counter pain relievers, such as ibuprofen.

Other prescribed treatments to manage endometriosis include hormone therapy , such as birth control pills, or the insertion of an intrauterine device .

None of these options, however, are ideal. NSAIDs often do not reduce the severe pain that endometriosis can cause, and both birth control pills and IUDs can produce side effects that further impact quality of life.

Yet none of the formally offered options and treatments proved to be enough.

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Role Of Macrophages In Endometriosis

Macrophages are the most abundant type of cell found in the peritoneal fluid of women with no evidence of endometriosis . While macrophage concentrations fluctuate during the menstrual cycle, they are normally elevated during menses . Activated macrophages release cytokines, growth factors and prostaglandins during menstruation in women who do not have endometriosis in order to regulate the peritoneal cavity by removing red blood cells, tissue fragments and foreign endometrial cells . Women with endometriosis have a higher level of activated peritoneal macrophages . Therefore, the increased expression of cytokines and growth factors from the macrophages and their effects on the peritoneal environment is associated with the pathophysiology of endometriosis .

What Are The Symptoms Of Endometriosis

Symptoms of endometriosis can include:

• Pain. This is the most common symptom. Women with endometriosis may have many different kinds of pain. These include:
• Very painful menstrual cramps. The pain may get worse over time.
• Chronic pain in the lower back and pelvis
• Pain during or after sex. This is usually described as a “deep” pain and is different from pain felt at the entrance to the vagina when penetration begins.
• Intestinal pain
• Painful bowel movements or pain when urinating during menstrual periods. In rare cases, you may also find blood in your stool or urine.

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What Does Endometriosis Pain Feel Like

Endometriosis affects each person differently. It’s also what I like to refer to as an “all-body” disease. This is because endometriosis has the potential to affect every aspect of your life, including your social life, intimate relationships, and your career.

Patient perspective:

“Pain from endometriosis can be felt during your period, or all month long cyclic versus noncyclic pain,” says Heather Jeffcoat, DPT, owner of Femina Physical Therapy and author of “Sex Without Pain: A Self Treatment Guide to the Sex Life You Deserve.”

Patient perspective:

Endometriosis presents different types of pain at different times. For example, late at night, I tend to have sciatic endometriosis pain. When this happens, I can feel a deep, intense pain in my left leg.

Sometimes, I’ll also experience a burning sensation in my urethra. This is because I have interstitial cystitis , an incurable bladder condition that causes pain and pressure in the bladder area, in addition to urinary tract symptoms. I was diagnosed with IC just before my official endometriosis diagnosis. Whenever I’m experiencing an “endo flare-up” my IC acts up too.

Endometriosis can cause pain:

• During or after sex
• During bowel movements or urination

Patient perspective:

• Chronic fatigue
• GI problems

Pain Missed Work Chronic Fatigue

However, research on endometriosis its mechanisms, causes, and treatments continues to be very limited, which has prompted an outcry from those living with this chronic condition and researchers interested in studying it alike.

In 2017, a team of researchers from the Faculty of Health, Education, and Life Sciences at Birmingham City University in the United Kingdom interviewed women with endometriosis about their experiences in seeking a diagnosis and treatment for the condition.

The findings were stark. Study participants spoke of feeling desperate, having severe side effects from the treatments they received, and not being believed by those around them when they told of their experiences.

Dr. Annalise Weckesser, one of the researchers involved in this study, commented:

Endometriosis has long been a neglected area of research and funding. We know that the average waiting time for women to receive a diagnosis is 7 years, which is unacceptable. Our pilot study shows that even once women receive a diagnosis, for some, their struggle with managing their symptoms has only begun.

These symptoms are as many as they are severe. Each of the women who spoke to MNT about their experiences living with endometriosis emphasized this.

When asked how this chronic condition had impacted her quality of life, Martha said that, ironically, t might be easier to answer how it hasnt affected my quality of life.

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What Happens When You Have Endometriosis

Causes of Endometriosis

The exact cause of endometriosis is unknown, but there are several theories that explain how and why endometriosis happens. Retrograde menstruation is one popular theory of its origin in which blood and tissue from a womans uterus travel through the fallopian tubes into the abdominal cavity during her period. Nearly all women have some degree of retrograde menstruation, but only a few women will get endometriosis. This may be due to differences in a womans immune system.

Another theory of endometriosis origin is called coelomic metaplasia, in which cells in the body outside of the uterus can undergo changes to become cells that line the uterus. This is a common explanation for endometriosis at unusual sites like the thumb or knee. Another possible explanation for endometriosis in locations far from the uterus is that cells from the lining of the uterus travel through blood vessels or the lymphatic system, thereby reaching other distant organs or body areas.

Endometriosis can also spread at the time of surgery. For example, a woman with endometriosis that undergoes a cesarean section could inadvertently have endometriosis implant in the abdominal incision so that she develops endometriosis in the scar from the surgery.

Endometriosis is much more common if a close relative also has the disease, so there may also be genes that influence endometriosis.