Getting pregnant with endometriosis: what you need to know
March 2024 is Endometriosis Awareness Month – a chance to increase the conversation around this common but often debilitating condition. Affecting an estimated 10% of women, the disease is the result of uterine lining-like tissue growing elsewhere in the body – typically in the pelvic region in areas such as the ovaries or fallopian tubes.
'If we are to really support the 25% of women suffering from menstrual health conditions in the UK, we must all accept our responsibility this Endometriosis Awareness Month in talking about endometriosis and menstrual health to break down these barriers and encourage people to seek help if something isn’t right,' says Faye Farthing, campaigns and communications manager for Endometriosis UK.
'Endometriosis is a condition affecting 1.5million women and those assigned female at birth in the UK – yet 64% of women aged 16-24 have never heard of it. It is a condition that can have a huge impact on all aspects of a person’s life, including their education, career, relationships, and their physical and mental health.'
Endometriosis care has been in the spotlight recently due to criticism of gynaecological care in the UK. The most recent stats from the Royal College of Obstetricians and Gynaecologists from October 2023 found that there are 570,000 women waiting to be seen by specialists in the UK – a 60% increase on pre-pandemic levels. 'Covid had a huge impact on endometriosis care. People saw cancellations to appointments and surgeries. We’re calling on the Government to not leave behind the 1.5million with endometriosis in the UK and to make sure patients know when they can expect care to resume and do not have to continue face living in limbo,' says Fathering.
Research suggests that 96% of women with endometriosis worry about the impact of endometriosis on their fertility, meaning there are millions of women out there feeling anxious about their reproductive health. So we're diving into the topic with the help of a reproductive expert, asking what you should know about endometriosis and fertility, and talking to one woman who has experienced trying to conceive with the condition.
Can I get pregnant with endometriosis?
If you do want to have a baby someday, you might be wondering if conceiving naturally is possible, if getting pregnant with endometriosis fast is something that can actually happen and, if not, how fertility treatment might happen.
The reason why endometriosis can cause complications with reproduction isn't totally understood, but it's thought that that the cobweb-like adhesions can cause damage to the fallopian tubes or ovaries, according to the NHS.
When it comes to endo and conceiving naturally, your chances come down to a) how severe your case is and b) factors that aren't anything to do with the condition.
By the latter, we mean that, as with any woman trying to get pregnant, you may find it easier if you're younger. Similarly, whether or not you've been using hormonal birth control or other hormonal and genetic conditions can impact whether you will will be able to conceive.
Your significant other also plays a role in this. Their sperm (if that applies to your situation) needs to be healthy and you both need to be sure that you're maintaining a generally healthy lifestyle – minimal booze, not smoking, eating nutritious foods and clocking up regular sweat seshes.
How to get pregnant with endometriosis, fast
If you have endo and are trying to have a baby, it's advisable to seek pro help after six months of trying, as opposed to the year that is usually recommended, according to Professor Adam Balen, consultant in reproductive medicine at Leeds Teaching Hospitals NHS Trust. If you're over 35, then even sooner than that is a good shout.
What are the chances of getting pregnant with endometriosis?
In terms of percentages, charity Endometriosis UK has crunched the data. It shows that:
If 100 women with minimal-mild endometriosis all start trying for a baby, at the end of one year, 75 will be pregnant.
If 100 women with moderate endometriosis all start trying for a baby, at the end of one year, 50 will be pregnant.
If 100 women with severe endometriosis all start trying for a baby, at the end of one year, 25 will be pregnant.
For context, if 100 women without endometriosis all start trying for a baby, at the end of one year, 84 will be pregnant.
What is the treatment for getting pregnant with endometriosis?
If you have moderate endo, it may be decided that some of the growth should be removed via a procedure known as a laparoscopy (keyhole surgery, in which a small telescope is used to peer at your internal tissue in your abdomen so that a surgeon can take any growth out).
Getting pregnant with endometriosis after laparoscopy
This is so that any growth that is preventing an egg from moving down your fallopian tubes is vanquished. 'This procedure can also be used to diagnose your endometriosis for certain. It's a pretty straightforward day case operation,' explains Professor Balen.
If your endo is more severe – and you have endometriotic cysts that have developed on your ovaries or blocked fallopian tubes thanks to the growth of the tissue that typically lines your uterus – then it may be decided that you should have surgery to have these removed.
This is in the hopes that so that it can get back to ovulating as normal and to increase your chances of conception.
Having IVF with endometriosis
'If conception does not occur within six to 12 months after surgery, then you should be offered IVF,' says Professor Balen.
He also says that starting GnRH agonist therapy, in which you're given a course of hormones that help to control your menstrual cycle, is the best course of action at this point, before starting IVF six to eight weeks later.
Though, something important to bear in mind if your next step is seeking fertility treatment: there's a postcode lottery.
Contact your clinic or GP for case-specific advice if you're concerned that the pandemic might affect your treatment.
Getting pregnant with endometriosis: what's on the NHS?
All of the above treatment is covered by the NHS, including IVF. The broad rule around the latter, as prescribed by The National Institute for Health and Care Excellence (NICE), is that women under 40 should be covered for three cycles of the treatment, with women age 40-42 offered one.
To note: this can vary according to where you live (that 'postcode lottery' you've read about over your Sunday poached eggs) and so it's worth working out what your specific location's rules are.
Are there any risks to pregnancy with endometriosis?
First off: it is totally possible to have a healthy pregnancy with endometriosis. However, you are at higher risk of dealing with extra complications.
Sadly, carrying a baby when you have endometriosis does put you at higher risk of miscarriage. A 2015 study on nearly 15,000 people in Scotland, found the disorder increased the risk by 76%.
Your chances of having an ectopic pregnancy, in which a baby starts to develop outside of your uterus and can't be carried to full term, rise to 1.6% from 0.6%, while you're 26% more likely to have a premature birth. You may well end up having a Cesarean, as the chance of needing one rises by 40%.
As such, you'll need extra careful monitoring throughout your pregnancy, so do expect more doctors appointments than most women have.
'I was excited to start my family — but spent the next 12 months navigating doctor appointments and pain'
Pilates instructor Olivia Brierley, founder of The Mindfulsoul Studio, was diagnosed with endometriosis while trying to conceive — but her story shows that healthy pregnancies with endometriosis are possible.
'In March 2022, I made the decision to stop taking the pill in the hopes of conceiving, only to be met with excruciating pain during my first menstrual cycle. Given the experience of a close friend who suffered from endometriosis, I confided in her about my symptoms. Recognising similarities, she suggested that I might also be dealing with endometriosis.
I saw a gynaecologist pretty early on in my journey, although a conclusive diagnosis wasn't reached until 14 months later when I underwent excision laparoscopy surgery.
I thought that it would be a simple journey to conceiving after coming off the pill but instead I spent the first year navigating numerous doctor's appointments, fertility centres, and delving into research to gain a deeper understanding of my endometriosis.
After my diagnosis, I began to worry about my chances of falling pregnant. As I delved deeper into researching my condition, it became increasingly evident that my chances of becoming pregnant were slim. This realisation caused a lot of stress in various aspects of my life, affecting my work, well-being, and personal relationships. I often found myself explaining my symptoms to others, yet feeling misunderstood. Managing fertility concerns is challenging enough, but the added layer of a chronic illness introduced a whole new level of stress to navigate.
For the next few months, I threw myself into holistic practices to support my body after surgery and with trying to conceive. I feel lucky that I managed to fall pregnant and have a remarkably smooth pregnancy. Now that I've finished breastfeeding, my menstrual cycles have resumed, and fortunately, they've been quite manageable, fingers crossed this continues. There's a prevalent misconception regarding endometriosis and pregnancy—while pregnancy may offer temporary relief, it's not a cure, and symptoms can resurface once menstrual cycles resume.
Endometriosis is an integral part of my journey that I am continually learning about it every single day. As a Pilates instructor, I've been able to launch my community to help other people dealing with chronic illnesses support their bodies with movement.'
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