Birmingham Civil Servant's Decade-Long Endometriosis Battle Revealed
A Birmingham civil servant has courageously shared her harrowing journey of enduring agonising pain for more than a decade before finally receiving a formal diagnosis for endometriosis. Zainab Kaleemullah, aged thirty-six and residing in Birmingham, experienced debilitating symptoms beginning in her early teenage years, yet medical professionals did not confirm her condition until November 2022.
Understanding Endometriosis and Its Impact
Endometriosis is a chronic medical condition affecting approximately one in ten women, with potential lifelong consequences. The disorder occurs when cells similar to those lining the uterus appear elsewhere in the body, leading to severe pain, internal bleeding, scarring, and inflammation. Following a keyhole surgical procedure, Zainab discovered she had severe endometriosis, with many of her reproductive organs described as "squashed and stuck together." Additionally, she was diagnosed with adenomyosis, where the uterine lining grows into the muscular wall of the womb.
Personal Struggles and Cultural Challenges
Zainab recalls her teenage years marked by "extremely painful heavy bleeding," forcing her to sleep on the floor atop a plastic sheet to manage the flow. She describes feeling "very isolated from my friends and self-conscious" due to frequent accidents where she bled through her clothing. The situation was compounded by cultural taboos within the South Asian community, where discussing menstrual health remains largely forbidden. "It was very embarrassing," she admits, highlighting the additional emotional burden she carried.
Her academic life suffered significantly as well. "I went to school but I was very, very unwell," Zainab states, noting that university brought on debilitating fatigue that further hindered her daily functioning. Over the years, she experimented with various contraceptive methods as potential treatments, but "nothing made my pain or bleeding manageable."
Raising Awareness and Dispelling Myths
Zainab emphasises that severe menstrual pain is not normal and should not be dismissed. "Being in such severe pain is not normal. Having a period that really impacts your social life, your mental health, your wellbeing and how well you do at school, is not normal. A period shouldn't impact you in that way," she asserts. She also addresses common misconceptions about fertility, explaining, "Just because you have endometriosis doesn't mean you can't have children. People with the condition can successfully go on to have children – it was a worry for me when I was younger, that it would make me infertile."
Statistics indicate that while endometriosis is associated with fertility challenges, an estimated sixty to seventy percent of those affected can conceive naturally. Zainab's physical symptoms include "endo belly," characterised by an extremely painful and swollen abdomen, which has altered her body image and daily comfort.
The Mental and Emotional Toll
Beyond the physical agony, Zainab underscores the profound psychological impact of living with endometriosis. "The mental toll is very real, it's not just the physical pain," she reveals. Finding a supportive community has been transformative for her. "Having people who understand makes a real huge difference, it has had such an impact on my life meeting individuals with the condition, especially meeting people at the other end, who have children and have gone on to have a hysterectomy. I really have relied on their wisdom and courage to get me through some tough times."
Her story emerges amid a national awareness campaign aimed at educating the public about endometriosis, encouraging earlier diagnosis, and fostering greater understanding of the condition's far-reaching effects on women's lives.
