So, as Endometriosis Awareness Month (March) approaches, we asked three women with the condition what they wish more people, including medical professionals, knew about the debilitating condition\u2026<\/p>\n
Zainab Kaleemullah, 36, a civil servant from Birmingham, has suffered endometriosis symptoms since her early teens, but wasn\u2019t formally diagnosed until November 2022. Following a laparoscopy (keyhole surgery), she was told she had severe endometriosis and that a lot of her reproductive organs were \u201csquashed and stuck together\u201d. She also has adenomyosis, where the lining of the womb grows into the muscle in the walls of the womb.<\/p>\n As a teen she experienced \u201cextremely painful heavy bleeding. I\u2019d have to sleep on the floor on a plastic sheet because I would bleed through\u201d.<\/p>\n She adds: \u201cIt was very embarrassing, particularly in the south Asian community, as talking about periods is very taboo.\u201d She felt \u201cvery isolated from my friends and self-conscious\u201d, as she\u2019d regularly bleed through her clothes. \u201cI went to school but I was very, very unwell,\u201d she says, and then at university, suffered debilitating fatigue.<\/p>\n Endometriosis has significantly changed her body too. \u201cI have endo belly, an extremely painful, swollen abdomen,\u201d she says, and describes spending years trying different forms of contraception as treatment, but \u201cnothing made my pain or bleeding manageable\u201d.<\/p>\n Here is what Kaleemullah wishes people knew\u2026<\/p>\n \u201cBeing 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\u2019t impact you in that way.\u201d<\/p>\n She continues: \u201cJust because you have endometriosis doesn\u2019t mean you can\u2019t have children. People with the condition can successfully go on to have children \u2013 it was a worry for me when I was younger, that it would make me infertile.\u201d Although endometriosis is associated with fertility problems (more research needs to be done), it\u2019s estimated that 60-70% of sufferers will be able to conceive naturally.<\/p>\n \u201cThe mental toll is very real, it\u2019s not just the physical pain,\u201d she says. \u201cHaving 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.\u201d<\/p>\n Natalie Greenwood, 36, a teacher in Halifax, began experiencing sharp, shooting bladder pain and was diagnosed with endometriosis in 2013. She has since had three laparoscopies, two flexible sigmoidoscopies and been in chemical menopause three times.<\/p>\n On visiting her GP, the mum-of-one was told endometriosis was \u201ca pretty long journey\u201d. \u201cI wasn\u2019t in a relationship at that point or anywhere near to wanting kids and [the GP] said, \u2018Due to where you are in your life at the minute, go away, manage it as best you can and come back when you want kids, realise you can\u2019t have them and we\u2019ll treat you.\u2019 I said no thanks.\u201d She asked for a second opinion, and was diagnosed swiftly following a diagnostic laparoscopy \u2013 for most sufferers, the average time between first seeing a doctor and getting a diagnosis is eight years and 10 months.<\/p>\n \u201cFatigue and low energy, that is probably the most debilitating thing for me,\u201d says Greenwood. \u201cWorking full-time is a struggle. I get to the weekend and I can\u2019t get out of bed.\u201d<\/p>\n She is frustrated that\u2026<\/p>\n \u201cWe still have this lack of understanding and knowledge around endometriosis. It\u2019s hard because I\u2019m not a health professional, and I don\u2019t have any medical qualifications, but often I know this condition better than the person I\u2019m speaking to when I go to appointments.\u201d She finds the misinformation sufferers hear from medics incredibly disheartening. \u201cBeing told to get pregnant, to go away and manage it \u2013 if you aren\u2019t someone who self-advocates, if you\u2019re someone in their early stages, you might just accept everything you\u2019re told. It\u2019s really hard.\u201d<\/p>\n She says: \u201cKeep a diary, log of all your symptoms, because you will be questioned on it and possibly you will be pushed back.\u201d Take this record to medical appointments and be prepared to argue your case. \u201cQuite often you\u2019re not even listened to, and a lot of people don\u2019t have the confidence to say, \u2018Hang on a minute, I have things to say.\u2019 Needing to go to your appointment with evidence is ridiculous \u2013 but necessary.<\/p>\n \u201cPregnancy doesn\u2019t cure it. Menopause doesn\u2019t cure it. There is no cure for it. A diagnostic laparoscopy is the only definitive way to diagnose endometriosis. An ultrasound scan isn\u2019t enough.\u201d She says you have to push for a diagnosis.<\/p>\n Jenni Johnson, 38, from Nottinghamshire, had to have a total hysterectomy aged 34. Her endometriosis symptoms began when her periods did, aged 13\/14. She\u2019d be stuck on the bathroom floor for 48 hours, would lose mobility in her right leg, and experience extensive blood loss, migraines and excruciating pain in her abdomen.<\/p>\n \u201cI was put on every type of birth control, which would work for two or three months max and then it\u2019d come back,\u201d she remembers. Her endometriosis was found when she was 23 and trying to conceive. She felt she was given \u201cno support\u201d and \u201cit got to the point where I was collapsing at work and blacking out. My right leg would go from under me \u2013 I had to leave work at that point.\u201d<\/p>\n Johnson relies on crutches to get about, is suffering similar symptoms related to another organ and fighting for treatment. \u201cFor nearly 20 years I was ignored,\u201d she says.<\/p>\n She wants people to know that\u2026<\/p>\n \u201cEndometriosis is an everyday condition, not a monthly condition. It can start anywhere inside the body and it starts attacking organs and fusing them together. It\u2019s like a spiderweb. Just because people are suffering more on their periods, doesn\u2019t mean they\u2019re not suffering on a day-to-day basis.<\/p>\n \u201cWhen people see me on crutches, they think it\u2019s something else, but I\u2019m like, \u2018No, this is what endometriosis has done to me\u2019. People have stoma bags because of endometriosis, because they\u2019ve had to have their bowel out because it\u2019s done too much damage to the bowel, or you\u2019ve got people that have to rely on catheters because it\u2019s done that much damage to the bladder. If it wasn\u2019t that serious and it\u2019s just a monthly thing, then why are people at this stage?<\/p>\n \u201cI wish medical professionals would learn to listen to the patient, rather than saying, \u2018Take some paracetamol, you\u2019ll be fine.\u2019 And I\u2019d like for surgeons beyond gynae to have some understanding of endometriosis. We need a little bit more education and awareness around the condition and how to approach it.\u201d<\/p>\n Visit Endometriosis UK to use its 60-second <\/p>\n![\"Sophie](\"https:\/\/www.newsbeep.com\/ie\/wp-content\/uploads\/2026\/02\/HRG6Y7CSWZDBPIF56PLTIH2BJU.jpg\")
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