It took an ectopic pregnancy for this woman's endo to be diagnosed
Why did it take the loss of her baby for this woman’s endometriosis to be diagnosed after she suffered years of crippling monthly pain?
- Career-focused Jennifer Came suffered an ectopic pregnancy three years ago
Were it not for becoming pregnant, Jennifer Came, 28, might still not know the reason for the agonising period pain she experienced for more than a decade.
Even though her periods caused her ‘such pain I’d just cry’ since she was a teenager, ‘I had just accepted it as my lot,’ says Jennifer, a marketing executive from South London.
Then, three years ago, Jennifer had an ectopic pregnancy, where an embryo implants outside of the uterus, usually in the fallopian tube, where it cannot survive. After emergency surgery to remove it (in rare cases it can be dangerous for the woman if not treated in time, because the fallopian tube can rupture), it was discovered that Jennifer also had endometriosis.
The condition means tissue similar to the cells that make up the womb lining grow elsewhere in the body, often causing extreme pain (this occurs as the tissue breaks down every month, just as the lining of the womb does; but the blood has no way of leaving the body, causing inflammation). As many as 10 per cent — possibly more — of premenopausal women have endometriosis, according to charity Endometriosis UK.
While Jennifer is relieved to finally know the reason for years of pain, the diagnosis is tainted with the knowledge that the condition has affected her fertility, reducing her chances of conceiving naturally. And it put her at increased risk of the ectopic pregnancy in the first place.
Were it not for becoming pregnant, Jennifer Came (pictured), 28, might still not know the reason for the agonising period pain she experienced for more than a decade
‘The average time to diagnosis in the UK is a shocking eight years,’ says Emma Cox, CEO of Endometriosis UK. ‘So to have the disease but no diagnosis during this time means severe pain may be normalised or dismissed by doctors. Without a diagnosis, treatment cannot be accessed and, without treatment, the disease may spread.’
She points to a study in Denmark in 2022, suggesting 79 per cent of women with endometriosis don’t have a diagnosis: meaning millions of women in the UK have the condition but are By JULIE COOK not being diagnosed — it is currently reported as 1.5million, but many more could be affected, this study suggests.
And, according to Professor Ertan Saridogan, a consultant in reproductive medicine and minimal access surgery at University College London Hospitals NHS Foundation Trust, ‘in some women it can go undiagnosed for many years until something like an ectopic pregnancy happens’.
Jennifer’s periods were normal to begin with, ‘but when I turned 16 they became incredibly painful — now it’s like someone standing in your uterus with a sword’.
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The pain meant she often had to miss lessons and once, during her final exams, had to run out.
‘The headmistress followed me and was so worried,’ she says. ‘I was doubled over on the loo screaming in pain.’ Over the years, Jennifer’s mother took her to the doctor. She recalls: ‘We tried the Pill but it gave me migraines, so it was back to painful periods.’
After finishing university and starting work, ‘my periods became erratic — sometimes not coming for six weeks or more — but whenever they did they were excruciatingly painful’, she says.
Then, in autumn 2019, Jennifer was in a work meeting when she suddenly felt very unwell. ‘I was clammy, couldn’t see straight and had a pain in the left side of my stomach that was worse than any period pain,’ she says. ‘I had to go home. I lived near Charing Cross Hospital at the time so I staggered in and they took me into A&E.’
There, doctors took a urine sample: when the results came back, the nurse told Jennifer that she was pregnant. ‘It was such a shock,’ Jennifer recalls.
‘I was in my mid-20s and focused on my career. Although I definitely want children I had not planned a baby just then. But then the nurse said that this level of pain indicated something was not right.’
Jennifer was transferred to Acton Hospital for more specialist treatment: scans showed it was an ectopic pregnancy. ‘The baby had implanted and was growing in my fallopian tube,’ says Jennifer.
Around one in 90 pregnancies in the UK is ectopic. Often the reason for an ectopic pregnancy is never determined. However, women with endometriosis are 2.7 times more likely to have an ectopic pregnancy compared with those without endometriosis, says Emma Cox — although the overall risk is still small.
Around one in 90 pregnancies in the UK is ectopic. Often the reason for an ectopic pregnancy is never determined (file photo)
It’s not known why endometriosis increases the risk — possible causes include inflammation, changes to the lining of the uterus, or endometriosis affecting the fallopian tubes.
Jennifer underwent laparoscopic surgery that day to remove the pregnancy and her left fallopian tube. Ectopic pregnancies often result in the loss of the fallopian tube. ‘I was very upset to lose the baby, but relieved the pain had gone,’ she says.
Then Jennifer was told the surgery had revealed deep-infiltrating endometriosis — meaning it had moved beyond the womb and was growing deep within surrounding organs and tissue. ‘I was shocked but also suddenly it all made sense — all the pain over the years. How had I never guessed?’ And how had the doctors missed it?
Professor Saridogan says that endometriosis pain ‘can vary in the body depending on where it grows — in rare cases even near the lung’. It can cause period pain, painful bowel motions, pain during sex ‘or even pain all the time’, he adds.
(Heavy bleeding is common, affecting around a third of women with endometriosis, he says, but it’s possible to have endometriosis without unusually heavy periods.)
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‘In teenagers painful periods are common so, in general, when we see a teenager with painful periods doctors do not always consider endometriosis. Instead, it’s thought more than likely these painful periods will settle in time.
‘But it is not normal to have very painful periods. Yet sometimes it goes uninvestigated.’
The only way to diagnose — or rule out — endometriosis for certain is via keyhole surgery, as the lesions of extra tissue don’t always show up on a scan. ‘Scans may be normal, but they don’t rule out endometriosis,’ says Professor Saridogan.
Yet Jennifer had never been sent for a scan — or any further investigations for her period pain.
Emma Cox says: ‘If you’re experiencing chronic pelvic pain or period pain that’s interfering with your day-to-day life, it’s not normal and it’s best to see a doctor. Keeping a pain and symptoms diary can help show your doctor what you’re experiencing, such as if there are any cyclical symptoms each month. Ask if your GP practice has a doctor who specialises in women’s health.’
After the ectopic pregnancy, Jennifer had an IUD coil fitted and has not had a period for three years. ‘It’s wonderful living without period pain,’ she says. (The IUD coil is an established treatment for endometriosis and works by releasing progesterone into the womb and pelvis which stop periods.)
Even so, the delay in diagnosis has come at a cost, as both endometriosis itself and a previous ectopic pregnancy can affect future fertility. While an estimated 60- 70 per cent of women with endometriosis will conceive naturally, it is also a common condition among those seeking fertility treatment.
Professor Saridogan says that endometriosis pain ‘can vary in the body depending on where it grows — in rare cases even near the lung’. It can cause period pain, painful bowel motions, pain during sex ‘or even pain all the time’ (file photo)
Once a woman has had one ectopic pregnancy, she has an increased risk of it happening again. And losing a fallopian tube makes it harder to conceive (although it’s estimated that 65 per cent of women will get pregnant again within 18 months after an ectopic pregnancy).
That said, ‘women who’ve had an ectopic and have endometriosis are more likely to have difficulties getting pregnant, as well as a higher risk of another ectopic pregnancy in the other fallopian tube,’ says Professor Saridogan.
Doctors have advised Jennifer to try for a baby sooner rather than later, but she says it’s not what she wants at the moment. ‘They did say I’d be eligible for IVF when the time comes, though,’ she says.
She recently ran the ASICS London 10k and will be running the London Landmarks Half Marathon in 2024 for Endometriosis UK and is telling her story to warn other women. She is still amazed no doctor ever suggested this could be the cause of her pain.
‘We’re told as women to put up with period pain, but unbearable pain is not the norm. I was never offered a scan that might have shown my endometriosis. Now I have less chance of conceiving naturally and having a successful pregnancy.’
Doctor TikTok – Experts assess viral health trends
This week: Rosemary oil treats hair loss
What social media says: With 205million searches for rosemary oil and countless videos from influencers purporting to show ‘before and afters’ of themselves using the ointment to thicken their hair or remedy hair loss, this is an unstoppable growing trend.
Social media users say it’s a fail-safe ‘natural’ treatment and some have even been using it to treat cradle cap and bald spots on their babies.
Social media users say it’s a fail-safe ‘natural’ treatment and some have even been using it to treat cradle cap and bald spots on their babies
The expert’s advice: ‘Surprisingly, there may be something in this,’ says Dr Andrew Birnie, a consultant dermatologist at East Kent Hospitals University NHS Foundation Trust.
‘A 2015 study compared rosemary oil with the established hair loss treatment, 2 per cent minoxidil, and its effect on alopecia [hair loss] was essentially the same; no change after three months, but a significant regrowth after six.
‘Bear in mind this is statistical significance; in real life you may not notice a dramatic difference. And, just like minoxidil, if you stop using rosemary oil, the hair loss continues. Its effect may be due to carnosic acid, a compound in the plant, which has anti-inflammatory and antioxidant properties. Applying it to your scalp creates an environment where your hair can thrive. I’d be cautious about putting it on babies. Check the label; just because a product is “natural” does not mean it can’t have side-effects.’
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