A young couple walked into the infertility clinic after eight years of marriage, having been unable to conceive. Upon investigation, the woman revealed that having intercourse was painful for her. The pain grew so severe that they eventually stopped attempting to get pregnant after multiple unsuccessful attempts. The inability to further their bloodline was putting a strain on her family life. Feelings of guilt and helplessness led to her requiring treatment for anxiety and depression.
A pelvic exam revealed she had severe endometriosis (en-doe-me-tree-O-sis) involving the lower end of the vagina and anal canal. She required surgery to identify the cause of her infertility.
The surgery revealed that she had a frozen pelvis, a condition where organs in the pelvis are stuck to each other, a finding seen in endometriosis. Surgical correction of her condition was deemed too risky with a low chance of success. After multiple rounds of counselling, a decision was made to attempt in-vitro fertilisation, or a test tube baby.
What is endometriosis?
Endometriosis is a chronic condition that involves the presence of uterine tissue in places other than inside the uterus. It is a hormone-dependent condition. The hormone responsible is estrogen, so women with prolonged exposure to estrogen are prey to this condition.
Girls who start their periods at an early age and women who reach menopause late, have never breastfed or have an estrogen-secreting tumour are at a higher risk of developing endometriosis.
The organs usually involved are the ovaries, fallopian tubes, and the outer lining of internal organs called the peritoneum. The body mounts an exaggerated response to this displaced endometrial tissue during periods, causing pain of varying degrees. This can be chronic, incapacitating, and can interfere with daily activities.
How common is endometriosis?
Over 190 million women all over the world are affected by endometriosis, which makes up 2-10% of the general female population. More than half the women undergoing treatment and evaluation of infertility tend to be diagnosed with endometriosis.
In India, about 25 million women suffer from this condition. However, according to experts, these numbers are highly under-reported. The disease spectrum varies from asymptomatic to debilitating pain. In severe forms of this disease, even surgical treatment is challenging.
The time taken for a woman to be handed a diagnosis of endometriosis for debilitating period pains is 6-10 years. Dismissed even by doctors as bad period cramps, it is an elusive disease and may often take multiple consultations to be diagnosed.
What are the symptoms of endometriosis?
Besides pain in the lower tummy or back, which is worse during periods, other symptoms could include pain during or after sexual intercourse, pain when peeing or passing stools while on your period, feeling sick, constipation, diarrhea, blood in your pee or stools during your period, and difficulty getting pregnant.
It begins innocently enough - mothers hush their young daughters' whimpers when their first period cramps hit. With a smile and a hot water bottle, the mother explains to her bewildered young girl the many trials of life as a woman. Physical and mental stresses, she tells her, are a part and parcel of a woman's life. Such is our fate, and such is our lot.
Even the pain of childbirth, the mother says, is left to the woman alone. It's better to just develop a high threshold because pain, little girl, is inevitable. Ultimately, in our cultural setting, this results in prolonged suffering due to undiagnosed endometriosis.
The various manifestations of endometriosis are cysts in the ovary, damaged fallopian tubes causing infertility, severe pain during menstrual cycles, and, in severe cases, chronic pelvic pain. These can make women dependent on painkillers on a daily basis. Being a chronic and progressive disease, it significantly affects the quality of life if left untreated.
The WHO recognises endometriosis as a significant condition that leads to severe dysfunction in women's sexual and reproductive health. The social and psychological impact on the lives of women across several domains is worthy of attention. Feelings of hopelessness, low self-esteem, despair, anxiety, and even suicidal ideation are common in women with endometriosis and should be looked out for.
What is the treatment for endometriosis?
Treatment involves medication or surgery, depending on the severity. Painkillers can help in early forms of the disease. Chronic pelvic pain may require hormonal tablets to suppress menstruation to reduce the growth of abnormally situated uterine tissue. Many women may opt for a hormone-releasing intrauterine device if they have medical conditions preventing them from safely consuming hormonal pills (like a liver condition).
To address infertility, 40% of the women require assisted reproductive techniques like test-tube babies. In severe conditions, surgical treatment to remove the ovaries and uterus may be opted for pain relief.
The body changes in response to the repeated inflammation of involved organs can make treatment and surgery challenging for the doctor. However, early diagnosis and early initiation of treatment can help in improving the disease outcome.
Barriers to endometriosis diagnosis and treatment
With symptoms ranging from non-specific pain to infertility, endometriosis overlaps significantly with other medical conditions. There are various barriers to the timely diagnosis of endometriosis.
These range from lack of awareness, not just in the general public but also among doctors, to dismissal and normalisation of pain during periods and the stigma associated with it. Once diagnosed, the cost of treatment can add to the psychological and financial burden on the person.
By raising awareness related to this disease, early detection and treatment could be possible. Discussing menstrual pain needs to be normalized in order to address the burden of this disease. The change that has to come at every level- personal, social, and clinical- is to heed the complaints of pain. Life-altering pelvic pain is not normal, nor is the idea that young women will need to just live with its consequences.
Early interventions can not just improve quality of life but can also prevent complications from endometriosis down the line. Doctors need to keep endometriosis in mind when evaluating pelvic pain. Lastly, we need to stop telling our daughters that pain is their inevitable lot in life.
Edited by Radhikaa Sharma.
Image by Gayatri.
