Endometriosis is a complex topic. It has emotional and mental health ramifications that are not properly understood. Here are a few words from women who are living this reality:
“It kills your spirit. You do not view the world the same way, you are jilted and see yourself as a helpless soul, trapped in a diseased useless body”. (Anonymous, ANZMH)
“When I have pain, it affects everything. When I don’t have pain I am the happiest, most grateful person alive”. (Anonymous, ANZMH)
“During days of severe pain, it cripples my body and makes it difficult to get out of bed even for simple routine chores. I feel anxious and it saddens me to not be able to live my life fully.” (Ashiya, 26, India)
Did you know?
- As per BBC health survey, 50% of endometriosis patients had suicidal thoughts, and relied on addictive painkillers.
- In a meta-analysis including 99,614 women, depression rates were high in women with endometriosis.
- Anxiety and mood disorders were reported in 29% and 68% women with endometriosis.
People associate endometriosis with physical discomfort and infertility. It is important we change our perception of how we view endometriosis as merely a reproductive issue.
What are some myths associated with endometriosis?
Fortunately, with increasing awareness and empathy, misconceptions around women reproductive issues are declining but they have yet to disappear completely. So, what are some endometriosis-related myths ?
Myth 1: Pregnancy is the only solution!
It is a misconception that pregnancy will cure endometriosis. This belief is completely ludicrous as there has been no scientific proof that pregnancy is the magical cure to this disorder. Yes, pregnancy will temporarily stop the symptoms. Women do not ovulate or menstruate when they are pregnant. However, pregnancy is not a permanent solution to the years of physical and mental agony that will follow.
There are different approaches for women who do not want to get married or have children young. IVF and egg-freezing is becoming much more common. It is definitely a safe alternative and worth considering.
Myth 2: Endometriosis causes infertility!
This myth is wrong
Endometriosis causes infertility .
Decreases the quantity and quality of eggs
Prevent the egg release due to adhesions with adjoining structures
If there is fluid collected in the tubes leading to formation of hematosalpinx then that fluid can be embrotoxic and prevents pregnancy .
Infertility can happen in both , so the symptoms in endometriosis goes beyond the stage of the disease . But definitely more common in moderate and advanced stages of endometriosis .
How does some women with this disorder are able to conceive without much hassle?
Stage 1 and stage 2 have much less incidence of infertility and hence they conceive all by themselves
Lack of proper knowledge about the onset and physiological effects of this disorder have led people to believe that a woman suffering from endometriosis might not ever be able to conceive. No validated scientific data proves this hypothesis. Continuous intake of hormones and surgeries might delay or reduce the chances of pregnancy but no direct evidence says that endometriosis causes infertility. One of another reasons for not conceiving may be due to painful intercourse, due to which many women choose to avoid any physical intimacy. Natural herb based medicines (Ayurveda) may provide symptomatic relief without affecting natural menstrual cycle and can be considered by women who might be ready to conceive.
Myth 3: Myth 2: It is just period pain!
It takes around seven years for this disorder to be diagnosed after it happens. In those years, enervative menstrual pain and unusually heavy periods are often disregarded as something normal. These signs should not be ignored and a gynaecologist should be consulted if any of these symptoms persist.
Endometriosis and Intimacy
Dyspareunia (painful sexual intercourse) is often common in women with endometriosis. Conversations about sexual health are unfortunately still a taboo. Women opt for silence as discussing their apprehensions about penetrative sex is difficult. It is something we are not taught. This makes the process of dealingwdealing with endometriosis iniin an a relationships cumbersome.
Painful sex, “can set up a negative schema in the brain, in which patients feel like every time they have sex, it will be painful, and in turn avoid it.” – says Carli Blau (Endofound Sex and Relationship expert).
Many times, males perceive it as female’s lack of interest in sex. Thus, avoidance of the intimacy in fear of pain and judgement causes stress and confusion.r. In addition, even if a woman has reported clinicalreported about clinical endometriosis symptomsthis issue, she may have fallen victim to gender bias and may have been inadequately treated or dismissed as something “normal” (as per SWHR). As per Endofound experts, a woman should be able to discuss openly with her partner about the kind and extent of intimacy she is comfortable with.
Vaginal dryness is a common side-effect of hormones, it might add to the discomfort and pain during sexual intercourse. Endofound experts recommend using lubes if the couple is trying to engage in penetrative sex.
Mental health burden of endometriosis associated infertility
Lack of proper knowledge about the onset and physiological effects of this disorder have led people to believe that a woman suffering from endometriosis might not ever be able to conceive. A mere thought of infertility leads to deterioration of mental health in women. Infertility issues have been known to induce anxiety, depression, and mood disorders that affect the overall quality of life.
Several factors contribute directly or indirectly to loss of fecundity in women with endometriosis, research says that infertility is associated only with 5-15% of patients. Continuous intake of hormones and surgeries might delay or reduce the chances of pregnancy but no direct evidence says that endometriosis causes infertility. Another reason for not conceiving may be due to painful intercourse, due to which many women choose to avoid any physical intimacy. Natural herb based medicines (Ayurveda) may provide symptomatic relief without affecting the natural menstrual cycle and can be considered by women who might be ready to conceive.
Endometriosis and lack of sleep
As per research, women with endometriosis experience twice the insomnia and fatigue than healthy women. The research pointed out that endometriosis pain induced insomnia, and lack of sleep further increase the pain due to activation of the body’s inflammatory mechanisms.
Another study revealed that the sleep quality in these women could be improved with dietary and lifestyle modifications such as intake of a diet rich in fruits and nuts and regular moderate exercise. Fruits such as banana, kiwi, orange, strawberries, apples and peaches were recommended as they have high amounts of melatonin (natural sleep inducer) producing agent (tryptophan).
Self-management therapies for women with endometriosis
Some self-help activities might be of help to lower the mental strain, as per Science. These are:
1. Play with dogs: Dogs help lower blood pressure and ease the anxiety associated with endometriosis.
2. Meditation: Meditation can help lower stress, improve pain and depression, and improve quality of life.
3. Heat packs: Alleviate stomach and pelvic pain.
4. Acupressure: Research says that it alleviated pain in women in the order of 6.5 out of 10 point scale.
5. Rest: Take plenty of rest.
6. Dietary changes: Women reported that intake of gluten-free and plant based diet helped alleviate symptoms in the order of 6.3 out of 10 point scale.
7. Moderate exercise: Some of the exercises that could be adopted are:
Author: Divya Gupta is a doctoral fellow working at CSIR-Indian Institute of Integrative Medicine. She is a recipient of Junior Research Fellowship granted by University Grants Commission, Govt. of India. She holds an M.Sc. Forensic Science (Toxicology) from Panjab University, India. Apart from research, she is science communication enthusiast and has attended international workshops conducted by Newton-Bhabha Fund. Apart from studies, she likes to watch rom-com movies, spend time with her family, and play with her pets and stray dogs. Her favourite quote is, “The best is yet to come.”
Verified: this article has been verified by Obstetrician & Gynaecologist, Amodita Ahuja, who is a cofounder at Project Pink Butterfly.