Endometriosis: The emotional impact of physical pain

What is endometriosis?

The uterus has a lining called the endometrium. Endometriosis is a condition in which the this tissue grows on the outside of the uterus, and sometimes on other parts of the body – including the ovaries, the fallopian tubes, and sometimes the bowel as well. The presence of this lining outside of the uterus can cause severe pain during periods. For some women, the pain may be so severe that they are incapacitated by it for the entire duration of their period.

It’s not just physical pain; the chronic pain associated with endometriosis can also lead to emotional difficulties. What are the symptoms of endometriosis?

Endometriosis occurs among women who are in their reproductive age – it is very likely to occur at the beginning of a woman's reprodudtcive years, with symptoms intensifying gradually. However, for many women, the diagnosis may occur only after years due to several reasons: the taboo around speaking about menstruation, or the lack of awareness about what is 'normal' and what requires medical intervention. The symptoms are:

• Heavy periods with painful cramps

• Pain during sex

• Recurring pain in the lower abdominal or pelvic area, whether during periods or otherwise

• Bleeding in between periods

• Difficulty getting pregnant

It is estimated that anywhere between 5 and 20 per cent of Indian women have endometriosis. If you have painful periods that incapacitate you for a few days, it is advisable to consult a gynecologist to rule out or confirm a diagnosis of endometriosis.

How is endometriosis different from regular period pain?

Many women experience painful cramps, abdominal pain or back pain during their periods. Some of this pain is natural; for some women, it may be due to a hormonal imbalance. However, with endometriosis, the pain is intense and may keep the woman from their daily routine. Some women experience this pain even before and after their period. 

Endometriosis is a chronic condition that can be managed with medication. In some cases, the doctor may prescribe surgery to remove the endometrium from other organs. However, in some cases, it may recur.

Often, endometriosis is equated with period pain while in fact it is more challenging to deal with. And due to lack of awareness, a woman with endometriosis is likely to suffer the pain for years before she is diagnosed. Some women seek help only when the pain is unbearable.

The emotional impact

Endometriosis can be much harder than dealing with painful periods. The chronic pain may keep the woman from going about her daily routine and tasks as usual. It can also be stressful due to:

• Inability to handle their daily responsibilities, whether at home or work

• Pain during sex, and any resulting strain in the relationship

• Concern about infertility, or actual infertility

• Worry about the recurrence or worsening of their condition

• ​Anxiety about treatment and frustration or hopelessness

As with other hormone-related conditions, it is rarely the hormone by itself that causes distress. While the physical factors do put a strain on the woman and bring down her ability to cope with her problem, background stressors can make it harder to cope. Background stressors may include:

• Unsupportive work atmosphere

• Lack of understanding or support from family

• Lack of emotional support and empathy for her condition

• Societal pressure to have a baby soon after marriage

• ​Inability to discuss her problems due to the taboo around menstruation

Given these background stressors, a woman may feel lonely, have low self-esteem, and have a sense of not being understood. The chronicity of the illness is daunting and can lead to hopelessness. Women with endometriosis who have high levels of background stressors may be more likely to suffer from mood disturbances, anxiety, depression or obsessive compulsions. Hormonal treatment can also trigger mood swings.

Coping with endometriosis

“When it comes to endometriosis-related pain, the perception is in the mind. But that doesn’t mean that the pain is imaginary. The perception is directly proportional to background stress. As stress increases, the threshold for pain comes down, and it becomes harder to cope,” explains Dr Latha Venkatraman, gynecologist. “And sometimes, people around her may be dismissive of the pain because it’s chronic. They may ignore the pain or offer unsupportive comments. This can add to the stress, and the ability to cope can come down further. So this becomes a vicious cycle.”

Coping with endometriosis can be less challenging if you can identify and manage your background stressors.

1. Understand the illness. Ask your doctor all the questions you have so you can be better informed.

2. If your family is supportive, talk to them and help them understand what you’re going through. You could have a family member or your partner accompany you to the gynecologist so they have a better understanding of endometriosis. If you have a partner, involve them in the treatment.

3. Identify what stresses you out during the week of your period. Try to take it light. If required, arrange for help from family and friends to get some tasks done.

4. Contrary to popular belief, endometriosis does not always cause infertility. If you’re worried about your fertility, talk to your doctor about treatment options and what you can do.

5. Follow an exercise routine during the days you feel well. Yoga is said to help both physically and emotionally.

6. Find an online support group. If you’re overwhelmed, you can reach out to a counselor for emotional support.

If you know someone with endometriosis, here’s how you can help:

1. Support her in reducing the stresses wherever possible. You can support her with her tasks around the house, or caring for the children.

2. Offer her home remedies you know of – while these may not get rid of the pain, they will help her understand that you’re empathetic to her problem and wish to help.

3. Ask her how she would like you to help when she’s in pain. Would she like a hot bath or a massage? A cup of tea? Or would she just like some space?

4. Encourage her to spend time in her hobbies, or activities she finds meaningful. This can be particularly effective with adolescent girls.