How to Care for Patients with Endometriosis

February 14 2023

The Symptoms, Risks, and Treatment, Plus 5 Tips for Patient Self-Care

Endometriosis is a painful condition that affects the uterine lining. Each cycle, the uterine lining thickens inside the uterus, then when not needed, breaks down and bleeds with each menstrual cycle. With endometriosis, the lining grows outside of the uterus, appearing on the fallopian tubes, ovaries, and the tissue lining your pelvis. With endometriosis, this tissue has no way to exit the body and becomes trapped. This can lead to cysts, irritation, and eventually scarring and adhesions (bands of fibrous tissue that cause pelvic tissue and organs to stick to one another). 

By the Numbers

This condition, often just referred to as “endo,” affects one in ten of those with a uterus who are of reproductive age. While endo is quite common, a diagnosis can actually take a long time for many who suffer from it. The average time from onset to diagnosis is around 10 years.

Risks and Complications

This long period of time between onset and diagnosis may be due to the patient dismissing the symptoms as normal or health care professionals not taking the complaints of their patient seriously enough. Either way, leaving endometriosis untreated can have severe consequences for the health and wellbeing of the patient. 

When left untreated, endo can lead to significant negative complications including:

• Severe pelvic pain
• Very painful periods
• Very heavy periods
• Bleeding between periods
• Scarring
• Adhesions
• Damage to other organs in the lower abdomen, including the digestive tract and bladder
• Childbirth complications (pregnancy loss, preterm birth, placenta previa, etc.)
• Infertility (can affect egg quantity or make it difficult for a fertilized egg to implant)
• Bowel and bladder issues
• Chronic inflammation, increasing risk of chronic illness and chronic pain
• Mental health decline
• Negative effect on social lives, romantic relationships, work, and education
• Increased risk of cancer

Patients should seek out their doctor if they have the following symptoms: 

• Difficulty getting or staying pregnant
• Heavy, painful periods
• Large blood clots with periods
• Abdominal pain or digestive issues

Treatment for Patients with Endometriosis

There currently is no cure for endo. Treatment focuses on managing symptoms, preventing disease progression, and reducing the risk of serious complications. 

For those who do not want to become pregnant in the immediate future, the main treatment is hormonal birth control. This can suppress a person’s menstrual cycle, leading to less bleeding each month and reducing the risk for further adhesions. It can also help manage the patient’s symptoms. NSAIDS may also be prescribed for pain.

Another option is to prescribe the taking of gonadotropin-releasing hormones. These hormones stop ovulation and can significantly suppress disease progression. However, because it causes symptoms similar to menopause, including potential bone density loss, many doctors are wary of prescribing these hormones. 

The third treatment option is to surgically remove endometrial adhesions and excess endometrial tissue. Surgery is also the only definitive way to diagnose endo. This surgery is typically performed laparoscopically. 

If symptoms worsen for patients receiving treatment, or treatment does not appear to be working, the patient should contact their doctor. 

Promoting Endometriosis Patient Self-Care and Condition Management

Living with the ongoing pain of endometriosis means patients should be encouraged to utilize self-care and condition management to help them live fuller, happier lives. 

1 | Mental Health Care

Living with the constant pain of endo can lead to depression and anxiety. Patients should seek out the help of a behavioral health psychologist to help them manage their stress. Treatment can include anti-depressants or deep breathing and mindfulness. 

2 | Help with Sex Life

Endo can cause pain during or after sex, creating a strain on the patient’s romantic relationships and sex life. A sexual therapist can guide the patient to talk openly with their partner and learn how to relax if they get anxious about sex. 

3 | Staying Active

Movement can help ease some endo symptoms because it lowers estrogen levels and inflammation. Exercise can also help improve mental health by releasing endorphins, the hormone that makes us feel happy. Patients should speak with their medical team to decide which exercises are best for them. Many doctors prescribe more gentle, lower-impact exercises such as yoga or Pilates. Pelvic floor therapy may also be a good option.

4 | Seek Support at Home and at Work

While it may be uncomfortable for patients to confide in their employer about their condition, letting them know what is going on can help them be more understanding if the patient may regularly miss work due to pain or if the patient needs accommodations (such as tweaking a work schedule around the menstrual cycle). At home, friends and family should be encouraged to lend a hand so the patient can have a break. Patients may find joining a support group helpful as well.

5 | Be Kind to Yourself

Patients with endo should be encouraged to give themselves grace and to be kind to themselves. Patients will need time and space to come to terms with their diagnosis and the limitations it may cause. They should also be encouraged to celebrate the little wins!

Home Care for Endometriosis

For many, endometriosis can become debilitating. Depending on one’s family situation, the patient may not always have the help they need at home in order to live comfortably. Personal home care and home health care are two options for endo patients who need a little assistance or just want to receive routine care at home. A personal care assistant can help with chores and daily living tasks, while home health can offer patients the ability to receive treatment without having to leave home, including medical and behavioral health care!

If you or a loved one has endometriosis and needs assistance, All American would love to help! We provide high quality personal and health care right in the comfort of your own home. Our services are customizable and provided by highly trained experts. Contact us today to learn more!