Endometriosis is a little-understood chronic condition which plagues one in 10 women in the UK, leaving them debilitated and often in pain, but many sufferers say they are not given the medical support they need.
The condition is caused when cells similar to those in the lining of the womb are found elsewhere in the body, reacting the same way by building up and then breaking down and bleeding, with no way for the blood to escape.
Around 1.5 million women in the UK are currently living with the condition. Endometriosis can affect all women and girls of a childbearing age, regardless of race or ethnicity, and may lead to infertility, fatigue and bowel and bladder problems.
Reporter Laura Bill spoke to four St Albans women who bravely opened up about their battles with this condition.
People don't know what normal is because we don't talk about it
Raihaanah Ahmed, 38, has suffered with endometriosis for years. She always had painful periods and assumed that it was just normal. Her condition was diagnosed when she was expecting her first child, despite being in agony for 10 years prior to pregnancy.
Jess Majercin, 23, said she thought agonising periods were normal as she never had talked about it to her friends. She started her periods at 14.
St Albans resident Jane Davda was only diagnosed when she was 31, but believes she has been suffering from the condition since she was a teenager: "In all that time no doctor had ever mentioned endometriosis to me and I had just accepted that my periods were extreme and believed I was just unfortunate."
Bharti Lim had "painful, heavy and inconsistent periods" which she too felt was just the norm for a long time.
Medics don't listen or take women seriously
Raihaanah said: "Actually having a child made me fight harder to access help and support as I felt that I had a responsibility to my children to be in good health.
"I found that no health professionals including my midwife knew about it. Eventually I found a good female GP who said to me she could not believe the lack of information out there for healthcare professionals."
Jess, who comes from Wheathampstead, has had similar experiences with getting her condition being taken seriously. It was only after nine years of suffering that Jess finally obtained a diagnosis of endometriosis which she feels was a huge challenge to achieve: "It was a real battle to finally have a medical opinion on this. I have suffered terribly with heavy irregular periods every month and in between periods.
"Normal painkillers don't work at all - the pain is excruciating. It affects every area of my life and makes it really hard to keep going.
"I never know when it is going to strike. I went to the doctor for years and they put me on random diets and told me it was IBS."
Bharti said one GP she went to diagnosed her pain as a water infection and kept giving her antibiotics: "Even after I ended up in hospital twice, he still didn't believe my symptoms were as bad as I was saying."
Bharti describes herself as "very lucky" that the GP who eventually did diagnose her listened to what she was saying: "I was visiting every few weeks complaining of pain. Eventually once he ruled everything out he sent me off for tests."
Jane first came across the condition after speaking to a colleague who had undergone surgery to deal with her own endometriosis, leading to her making an appointment with her doctor. "If it hadn’t been for that colleague I don’t know when or if I would have discovered I had endometriosis."
The doctor she saw first was a young junior who had to look up the condition during the appointment.
Laparoscopy?
In October 2020 Jess had a laparoscopy - a surgical diagnostic procedure used to examine the organs inside the abdomen - in which they lasered the endometriosis, but she was left with further scar tissue.
Jess said: "I honestly feel no better even though I'm supposed to have been 'cured'. My appointment with the GP lasted about five minutes. In the end they told me to stop going to the surgery as much which I found horrifying. I still have nowhere to go with this pain and no hope of it ever getting better."
Jess said there should be more awareness and education around the condition. She feels there is a huge lack of empathy from health professionals.
Following discussions about the implications on her fertility Jane eventually decided to go ahead with surgery: "I couldn’t bear the thought of carrying on for months or even years trying for a baby with no success and in the meantime continuing to suffer the effects of the endometriosis every month.
"I was fortunate the surgery was a success and although the first couple of months after were not pain free I have since had six years of ’normal’."
Bharti had keyhole surgery in 2013.
Raihaanah is still waiting for her laparoscopy. She was due to have it but it was cancelled due to COVID. Raihannah still has heavy periods which are very draining and immobilising.
All four women said they believe there needs to be much more awareness, understanding and research into endometriosis to enable the medical profession to provide more options.
Jane summed up the sentiments of all of them: "There is no clarity on causes and treatment options can be extreme and ineffective. I hope the understanding and awareness grows now so that for others and for my daughter’s generation they don’t have to just accept it."
For advice and support on dealing with endometriosis, visit https://www.endometriosis-uk.org/get-support
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