⁠Understanding endometriosis: It's more than painful periods

Sameen* was just 19-years-old when she was diagnosed with endometriosis. Dealing with passing out from pain on the first day of periods, her symptoms included vomiting and a painful menstrual cycle, but she did not have a name for the ailment till her arts teacher sat her down.

“During my university, my teacher explained to me how she, too, had similar symptoms and recommended her to a doctor, who is known to be the country’s best,” she recalled.

Endometriosis in simple terms is a condition where the inner lining of the uterus called the endometrium, which is shed during periods, develops in other places such as ovaries, vagina, fallopian tubes or even the intestine.

According to the World Health Organisation (WHO), endometriosis impacts around 10% or roughly 190 million girls and women of reproductive age. It is known as a chronic condition which is linked to ‘life-impacting’ pain during periods and in many cases sexual intercourse. It also causes chronic pelvic pain, abdominal bloating, fatigue and sometimes infertility alongside severe mental health implications.

This is perhaps a condensed list, and one would wonder that a condition with such implications would definitely have a cure, but unfortunately, there is no known cure rather the treatment caters to pain management and controlling symptoms through medication and surgeries. Even the cause for the condition is not known. In countries like Pakistan, where women’s bodies are associated with taboos, it becomes harder to get access to diagnoses as well as a shot at treatment.

Sameen’s experiences with doctors were mixed. Some female doctors told her that she needed to be married off soon and that she could give birth through a cesarean section.

“I was taken aback at the advice they were giving to a 19-year-old. I just wanted to understand what was going on with my body and did understand their logic. Going to the doctor recommended by my teacher helped me immensely because after a proper diagnosis I realised there were lumps in my ovaries. I got my surgery done the same year as well,” she said.

Appalled by the limited knowledge, Sameen decided to write a research paper because it seemed like one of the best ways to address the vacuum. She conducted the research for her dissertation, and looked at the psychological and sociological impact on those suffering from endometriosis.

“However, I did not realise the toll my own research would take on me. I remember not being able to open my laptop because the stories were harrowing. Women would tell me that they wanted to commit suicide because of the pain they were in. Some could not get out of bed which added misery to their lives as a single Pakistani woman because who would marry someone who cannot even move?”

A biomedical scientist at Imperial College London, Sana Kardar, who herself deals with endometriosis, felt that the condition is severely unrecognised even in developed countries.

“Medical education often neglects it, and research is extremely underfunded. When I asked my friends if they learnt about endometriosis in medical school, they said barely a paragraph was dedicated to it. This lack of awareness leads to dismissal and misdiagnosis. In Pakistan, societal taboos surrounding women's health further exacerbate the issue. Many women are hesitant to seek help, and their concerns are often dismissed as 'just a period’,” she explained, adding that this not only delays diagnosis and treatment but also significantly impacts women's mental and physical well-being.

Societal stigmas

Sana maintained that the biggest difference in the response to endometriosis in Pakistan compared to other countries, like the UK, is the societal stigma.

“In Pakistan, seeking medical help for reproductive health issues often carries social repercussions. There's a fear of judgment and gossip, which can deter women from seeking necessary care. This is compounded by the lack of privacy and the potential for invasive questioning from healthcare providers,” she said, adding that the financial burden of healthcare in Pakistan can also be significant, making it difficult for many women to access the necessary treatment.

The medical landscape, according to Sana, also presents unique challenges because misconceptions about endometriosis are prevalent, and many doctors lack the necessary expertise for accurate diagnosis and treatment.

“There's a tendency to dismiss women's concerns and prioritise traditional, often ineffective, treatment options. Moreover, the pressure to give regards to marriage and motherhood can lead to delays in diagnosis and treatment, as women may feel compelled to focus on fertility rather than addressing their chronic pain and other health issues."

As someone who was raised in Pakistan, and is also involved with the Pakistani community in the UK, Sana shared that in Pakistan, women often prioritise pregnancy over addressing endometriosis.

"Misconceptions about fertility and pressure to conceive quickly hinder timely diagnosis and treatment. Capitalistic healthcare often prioritises [In vitro fertilisation] IVF over treating the underlying condition, and societal taboos, like the emphasis on virginity, limited access to necessary procedures and create significant barriers to women's reproductive health," she said.

Rampant misinformation

These factors, alongside limited awareness and access to specialised care, leaves many women struggling with untreated endometriosis and its long-term consequences.

“Misinformation about endometriosis abound, and is often spread by unqualified sources. Social media influencers often promote unproven treatments, leading to confusion and potential harm,” said Sana.

Quoting examples from the culture of consuming content from social media, the biomedical scientist said that some influencers claimed that Ozempic — a medicine for adults with type 2 diabetes — can help in treating endometriosis but that is unfounded and potentially dangerous.

Social media influencers often promote unproven treatments, leading to confusion and potential harm.

“While some natural remedies may offer limited symptom relief, like peppermint tea for bloating, their effectiveness varies greatly. It's crucial to consult with medical professionals before trying any new treatments or making significant dietary changes. Relying solely on online information can be misleading and potentially harmful. One must always prioritise evidence-based information and consult with qualified healthcare providers for personalised guidance,” she stressed.

Pointing out yet another misconception, Sana said the idea that women with endometriosis cannot conceive is not correct: “While pregnancy may be more challenging, it's entirely possible. Another misconception is that a hysterectomy cures endometriosis. This is incorrect, because the condition can spread beyond the reproductive organs. Furthermore, not all women respond to standard treatments like progesterone-only pills,” she said.

The lack of personalised treatment plans, Sana added, and the tendency to dismiss patient concerns are significant challenges faced by women with endometriosis.

Raising awareness

Given her vast experience of the condition, the biomedical scientist also runs a closed Facebook group called ‘The Endomentalist - EndO The Stigma’ to help women suffering from endometriosis.

“My journey began with a simple Facebook post about menstrual hygiene. The overwhelming response from women across the globe, particularly those from marginalised communities, inspired me to create an online support group. This safe space allows women to openly discuss reproductive health concerns, including endometriosis, without fear of judgment,” she said.

The platform, she added, offered women the opportunity to share their experiences, ask questions, and find support from others. “By fostering open dialogue and challenging societal taboos, this community empowers women to take control of their reproductive health and seek the support they deserve.”

With more than 7,000 members, the group helps women with getting a right diagnosis, a place to discuss, finding the appropriate medical practitioners and of course rant about experiences.

Laila Raza, an academic and activist from Karachi narrated that she developed an endometriosis cyst five or six years ago.

"Daily activities including simple movements like getting out of bed, became incredibly difficult. I was unable to explain the same to my support system and decided to seek help from an OBGYN. While my experience was smooth, I do realise that most women are subjected to scrutiny and it is thought that a woman will only visit an OBGYN if she is married or if she needs assistance with concerns related to sexual activities."

Following a series of ultrasounds, Laila was told that she had a cyst which could be removed using medication: “I had trouble with my menstrual cycle but the pain was constant. After taking a combination of medicine, including contraceptives, my cyst got dissolved, and thankfully it was benign and did not return.”

But Laila went through the ordeal alone. She could not recall how she was able to muster the strength for the hospital visits from procuring the medication and taking care of herself, something she would not have to do if there was any awareness of the condition.

Sana also points out that both societal and cultural factors significantly impact the experience of women with endometriosis in Pakistan.

“The emphasis on traditional gender roles and the pressure to conform to societal expectations can exacerbate the challenges faced by women with this condition. Limited access to quality healthcare, coupled with inadequate awareness and support systems, can leave women feeling isolated and unsupported,” she said.

Breaking down these barriers and creating a more supportive and understanding environment for women with endometriosis is crucial for improving their overall health and well-being,” concluded Sana.

Zoya Anwer is an independent multimedia journalist with work published both locally and internationally. Her reporting is focused on culture, gender and religious minorities.

This article is part of Big Picture's women's health series.

Header and thumbnail illustration by Geo.tv