Yesterday, Halsey announced she is pregnant with her first child – tagging her boyfriend, screenwriter Alev Aydin in her first public acknowledgement of their relationship. Flooded with support, many long-time fans noted how happy they were for her, specifically after years of fertility concerns.
Back in 2015, Halsey suffered a miscarriage, telling Rolling Stone that she wanted ‘to be a mum more than I ever want to be a pop star, more than I want to be anything in the world.’ Now, after five years, her supporters are thrilled that wish has come true. Because alongside the pain of her miscarriage, Halsey has also suffered with endometriosis for years – something she worried was the cause of her miscarriage.
Going through multiple endometriosis surgeries in 2019, she was told by doctors that her plans to freeze her eggs – which she said she was going to do that same year - were no longer necessary. ‘I was like, “Wait, what did you just say? Did you just say I can have kids?” It was like the reverse of finding out you have a terminal illness. I called my mom, crying.” Halsey told Rolling Stone.
Her story will be a beacon of hope for many women who like Halsey have endometriosis and worry about the infertility implications. ‘Many people with endometriosis will get pregnant naturally, but we do know that it does double the risk of infertility,’ says Emma Cox, CEO of Endometriosis UK. ‘One of the challenges around infertility is that it’s often considered a taboo subject, but actually there’s a lot that can be done to help people.’
In the UK, 1.5million women are thought to have endometriosis – 176million worldwide – but despite the overwhelming figures, diagnosis takes an average of eight years. That’s why fertility concerns are such a big issue, because by the time a woman is finally diagnosed with endometriosis she may already be trying to conceive – or at least has hopes to become a mother in future.
‘One of the major issues for us, as well as driving down diagnosis time, is working to ensure that all people who find out they’ve got endometriosis are then supported with decisions they might want to make around their fertility,’ explains Cox. ‘Because if you’ve already waited eight years to find out you have endometriosis and then want to consider your fertility, people need really prompt access to specialist fertility services, and they’re not getting it. And if you're diagnosed at 20, you may not want to make major life choices about children, but you need access to fertility preservation support so you have choices when you’re ready - sadly, this rarely happens.’
Women with endometriosis should be able to a fertility specialist straight away – and that’s not happening.
Helping women with endometriosis who are trying to conceive is also a big part of the charities job. Because, as Halsey explained, when you’re led to believe you won’t be able to have kids, getting that second opinion is key.
‘NICE guidelines for fertility say that if you have a known clinical cause of infertility you should be able to access specialist fertility treatment straight away,’ says Cox. ‘Unfortunately, that quite often doesn’t happen to people with endometriosis. Like people who don’t suffer from fertility issues and aren’t pregnant straight away, they might be told they need to carry on trying for a year or two. But if you’ve got endometriosis you should be able to access specialist support straight away – and that’s not happening. That’s why we're campaigning for better access.’
And where women have, they’ve had similarly miraculous results as Halsey. ‘There was one woman recently who called just to let us know that they’d been told they’d never have children. But after she rang our helpline and our volunteers talked her through getting a second opinion, the woman was able to access specialist help. After that, she was treated properly and conceived. 18-months after being told she’d never have children, she had her son because of our helpline talking her through her options, we get calls like that quite a lot,’ says Cox.
It doesn’t just have to be a miracle then, conceiving is possible for people with endometriosis that are struggling with fertility just by healthcare workers doing their due diligence and – unfortunately, for now – women persisting with seeking second opinions. It’s one of many reasons more research needs to be done in supporting people with endometriosis, no one should have to feel their motherhood dreams are hopeless just because science ignored the severity of endometriosis for so long.
With seeking more information in mind, we spoke to Mr Denis Tsepov, a consultant gynaecologist and laparoscopic surgeon, who established and leads The Endometriosis Centre at The Harley Street Clinic. Here, he answers all your endometriosis and ferility questions.
How difficult is it for women with endometriosis to get pregnant?
Endometriosis affects about 10% of women of reproductive age regardless of race, geography or socio-economic status. Up to 50% of infertile women have endometriosis. The trapped “menstrual tissue” located outside the cavity of the uterus may be affecting the pelvic organs, creating inflammation, scarring and pain. It can sometimes infiltrate into the bowel, the bladder, and the ureter, block the fallopian tubes and invade the muscle of the womb. The immune system plays significant role in this. In very simple terms- it recognizes some disturbance in the lining of the pelvis and sends immune cells to get rid of the irritating agent, like it would do for bacterial infection, for example. The inflammation is created by immune cells around spots of endometriosis turns out to be not very effective as endometriosis islands are the body’s own cells, therefore the scarring created around such spots is only making things worse and next month – everything starts again.
Endometriosis can affect fertility on multiple levels – by creating scarring and inflammation which can block fallopian tubes, by affecting the ovaries with endometriotic cysts, which can decrease the reserve of the ovary – the amount of eggs available for fertilisation. It can also create a rather hostile biochemical environment in the pelvis which can make natural conception difficult or impossible.
Endometriosis can also affect the muscle of the uterus – myometrium and this is associated with higher risk of early miscarriage.
Does endometriosis make pregnancies more risky or likely to end in miscarriage?
Yes. Presence of endometriosis increases the risk of ectopic pregnancy and risk of early miscarriage and can complicate pregnancy during later stages. According to data analysed and presented by ESHRE - European Society of Human Reproduction and Embryology, the risk of an ectopic pregnancy is increased from 0.6% normally to 1.6% with endometriosis. The chances of miscarriage, premature birth and need for Caesarean Section to deliver the baby are also significantly increased in women with endometriosis.
Do endometriosis symptoms change during pregnancy?
Endometriosis is a hormonally dependant disease which is driven mostly by hormonal sequence during menstrual cycle. The situation typically improves during pregnancy. As there is no menstrual cycle during the pregnancy endometriosis tends to “quiet down” as menstrual tissue type lesions become dormant although they do not disappear. Pregnancy should not be considered a “treatment” for endometriosis.
Pregnant women with endometriosis especially starting from the second trimester of pregnancy normally report less pain comparing to their non-pregnant state when they have natural menstrual cycle. But sometimes, especially in cases where severe endometriosis was diagnosed, pregnancy can worsen endometriosis symptoms. If the uterus is fixed in the pelvis with severe endometriosis related scarring before pregnancy, then during the pregnancy the enlargement of the pregnant uterus might put extra tension on areas of scarring and endometriosis, which is likely to increase pain. In most cases pain is likely to improve in pregnancy, but endometriosis does not go away and is likely to start causing symptoms again after giving birth - as menstrual cycle will return.”
What advice do you have for women with endometriosis that want to conceive?
I would strongly recommend women who have endometriosis to discuss their desire to get pregnant with their endometriosis specialist. A lot can be done before pregnancy to try and improve the outcome. It would be extremely useful to know the severity and location of endometriosis, state of fallopian tubes, possible involvement of ovaries and uterine muscle before pregnancy is considered, as sometimes only conservative fertility sparing excisional surgery for endometriosis before pregnancy can make natural conception possible. Very often women with endometriosis have to go for IVF to get pregnant. Fertility options discussed with endometriosis / fertility specialist before pregnancy is planned allow to optimise the effort and often save lots of time, money and minimize stress.
It is very important to start taking Folic acid during while trying to get pregnant and during early pregnancy and there some promising scientific data suggesting the use of low dose Aspirin and possibly Progestagens in early pregnancy to minimize the risk of miscarriage. These options are not universally suitable for everyone and have to be individually discussed with endometriosis specialist.
Women with endometriosis who become pregnant benefit from early ultrasound scan and early antenatal care with increased level of fetal wellbeing monitoring during all three trimesters of their pregnancy. These patients are best looked after in “High risk antenatal clinics” by experienced obstetric consultants and midwives. The decision where to deliver the baby: on a midwifery led unit or on highrisk delivery suite again should be discussed individually with obstetric consultant and risks balanced versus benefits.
If you're struggling with endometriosis and want to talk to someone about it, click here to visit Endometriosis UK.
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