The Challenges Of Endometriosis: From Pain during Sex to Effects on Quality of Life

Endometriosis affects 1 in 10 women of reproductive age. Endometriosis is both mental and physical, and many feel overwhelmed by it. Many women with endometriosis also experience depression and anxiety, as well as pain during sex. These experiences can affect both relationships and mental health. As as result, research shows that endo warriors who experience pain during sex may have a lower overall quality of life.^1-2 While endo symptoms can be difficult, knowing what to expect and how to best treat endometriosis can improve your quality of life.

How endometriosis impacts lifestyle and mental health

Some experts call endometriosis debilitating. It can have a big impact on a woman’s physical and emotional well-being. A woman’s social life can suffer due to the pain. It is also common for many to miss school or work. Women with endometriosis rate themselves as having a lower quality of life because of how the disease affects their routine.³

Women with endometriosis often have higher levels of depression, anxiety, and stress compared to those without the condition. A recent study found that 87 percent of women with endometriosis had depression and/or anxiety, while another study showed 15 percent of women had depression and 29 percent had anxiety. Variations in results could be due to how the studies defined depression and anxiety.³

Endometriosis and pain during sex

Over half of women with endometriosis have trouble enjoying sex due to pain. Some women feel a dull ache while others have bad pain. Some have sex-related pain all the time. Others only have pain when sex happens close to their period. It is possible to have pain during sex without endometriosis, but endometriosis makes you twice as likely to have episodes of painful sex.^1,2,4,5

Endometrial growths forming outside of the uterus are made of thick tissue. Because of this, scar tissue and swelling occur. When these growths are near the vagina and uterus, sex can hurt. The act of sex irritates the growths. Pain may occur during sex or up to 48 hours after sex.⁴

Endo's impact on relationships

Pain with sex can lead to low sexual satisfaction. Some of the following emotions are common to women having this symptom:²

• Fears about how painful sex will/can be
• Feelings of guilt because of the desire to avoid sex
• Anger and frustration about not enjoying sex
• Fears of how this will affect relationships

Painful sex can affect intimacy. It can stress a romantic relationship. Women having pain during sex have been shown to have more relationship problems than those without pain. This may be due to the disruption of a physical connection. It could also be due to how a woman’s self-esteem is affected.^4,6

The link between sex, quality of life, and mental health

Two out of every 3 young women (66 percent) having pain during sex had worse attitudes about sex and relationships. That number rises to 75 percent when endometriosis and painful sex occur together. The women rated themselves as having a lower quality of life compared to those without pain.^2,3,5

For young women, sexual experiences impact mental health. A 2020 study showed that women with satisfying sex lives had better mental health than those with poor sex lives. Women from ages 14 to 17 with good sex lives had less anxiety. Women ages 18 to 29 with good sex lives had less depression. Endometriosis plus painful sex can amplify sad feelings, cause identity struggles, and feelings of helpless about their situation.^5,7

Is there a way to stop the pain caused by sex?

Some women find relief by avoiding sex around the time of their period. A common medical treatment is the surgical removal of lesions. Women say the surgery lowers their pain. Sexual satisfaction improves, and mood may improve, too. Oral contraceptives may also be given.^8,9

We don't have to “just live with it”!

Some endo warriors are afraid to talk about their symptoms. Symptoms can affect your lifestyle, mood, relationships, and treatment. Be honest with your doctor and talk about your pain, sadness, or anxiety. Counseling may also be helpful. Together, you and your doctor can work to improve your quality of life.