Caregivers

Caring for people with Endometriosis

How does endometriosis impact caregivers?

Endometriosis is a complex, challenging disease for everyone involved – not least the caregiver or carer. Caregivers to people with endometriosis must learn to navigate a new world of illness, often without the guidance of doctors. Caring for someone with endometriosis will require adaptability, steadfast patience and commitment over the long-term. The resources listed below offer support as you navigate the care of your loved one. They also will help with your own self-care, and connect you with others walking  a similar journey.

What is endometriosis?

Endometriosis is a complex disease in which cells similar to the lining of the uterus are found outside the uterus. It is common, affecting 176 million people worldwide. It occurs in 7-15% of girls, women and trans men.

The true nature of endometriosis has eluded the medical community for centuries. The cause of the disease remains uncertain; said simply, many different factors (genetic, developmental and environmental) have been implicated in the course and nature of this condition.

What are the symptoms?

The symptoms of endometriosis can be experienced during your period, before your period, after your period and/or anytime during the month. The symptoms can be related to the areas where endometriosis invades. Even one symptom can be suggestive of endometriosis. Some women have no symptoms yet only suffer from infertility. In 40-50% of cases of ‘unexplained infertility,’ endometriosis is thought to be the underlying cause.

The most common symptoms are:


Severe period pain

Diarrhea or constipation

Fatigue

Heavy bleeding with your period

Frequent or burning urination

Migraines

Bloating

Pain with exercise

Lower back or leg pain

Nausea

Pain with sex

Infertility


Diagnosis

The average delay in diagnosis is 10 years. The vast majority of healthcare providers are not properly educated in recognizing the true symptomatic profile of endometriosis. Girls and women are regularly told that their symptoms are normal and that their pain is in their heads or simply “part of being a woman.”  It is common for women to go to many specialists before endometriosis is mentioned. For example, most providers do not know that gastrointestinal symptoms affect 90% of women with the disease.

Endometriosis can only be diagnosed surgically, preferably laparoscopic, and must be confirmed by a pathologist. There are no blood tests or diagnostic biomarkers that can be used to diagnose endometriosis at this time. Although imaging tests (MRIs, CATSCANs, etc.) may give an “informed suspicion,” they cannot rule out endometriosis and the majority of the disease cannot be seen on imaging. It is impossible to diagnose endometriosis through medical treatments, despite some OBGYN generalists advocating otherwise.

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Getting Endometriosis Treatment

The current gold-standard treatment is excision surgery.

The current gold-standard treatment is excision surgery. In excision surgery, a surgeon excises or cuts out the endometriosis lesion and sends specimens from the surgery to pathology for confirmation. This is markedly different than ablation surgery, where the surgeon merely burns the surface of the lesion. Be aware that while the vast majority of OBGYNs practice ablation surgery, only a handful have been trained using the excision method.

Ablation surgery often relegates a woman to repeat surgeries and continued pain, as all disease is not removed. Medications such as painkillers, GnRH agonists/antagonists (i.e. Lupron and Orilissa), oral contraceptives or other hormonal suppressives only mask symptoms and do not treat the disease.

Patients are also sometimes misled to believe that the only long-term solution is a hysterectomy. This is not true. This ongoing misconception is responsible for over 100,000 needless hysterectomies each year in the United States. Similarly, “pregnancy” and/or “menopause” are often touted as cures, but such claims are equally untrue.

Quality excision surgery combined with other multidisciplinary treatments such as diet and nutrition, acupuncture, pelvic physical therapy, and other adjunct treatments can all be helpful at effectively managing symptoms long-term.

Find a Doctor.

If you think you have endometriosis, there are specialists around the world who can help you get an accurate diagnosis, proper treatment, rule out other related conditions, and manage common comorbidities. Right now, the best way to find a specialist is by talking with the moderators and members of the below Facebook groups:

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Find community

We are stronger together. Join the online community of people with endometriosis and their caregivers to share experiences about treatment and doctors, to find support from people who are going through similar struggles, and share ideas for improving awareness and care throughout our community.

There are many incredible endometriosis organizations around the world working hard for education, awareness, and change. Connect with them and find community and fellowship.

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Take Action

There are so many ways to get involved in advocacy, whether it’s joining online, supporting our online petition to ACOG, supporting education or hosting a film screening or fundraiser.

  • Connect with other advocates. Join the conversation with fellow advocates on our social media pages and other pages online. Follow Endo What? on Instagram, Facebook, and Twitter.

  • Volunteer with us!

  • Watch the film Endo What to gain an accurate base of knowledge about the disease. Share it with other family members and friends.

  • Sign the ACOG online petition to ask ACOG to update their Practice Bulletin so that the 60k OBGYNs in the United States have the most accurate, up to date information.

  • Stay informed. Sign up for our newsletter to receive the latest news on advocacy, policy, and research.

  • Request your local library or community health center to purchase a copy of Endo What. Here's a sample request letter for your convenience (PDF, .doc)

  • Educate a school nurse by sponsoring a School Nurse Toolkit to your local middle or high school.