Adenomyosis and pregnancy: everything you need to know
Fertility and pregnancy can be difficult journeys at the best of times, but when you throw in a reproductive or gynaecological disorder, it can feel even harder.
If you suffer with adenomyosis, you are probably feeling overwhelmed and nervous about becoming pregnant. Or, perhaps you haven't felt quite right since being pregnant and are wondering if adenomyosis is to blame. No matter what you're thinking about regarding adenomyosis and pregnancy, we've asked experts to explain more.
They include Dr Jan Toledano, founder of London Hormone Clinic and specialist in family planning and women’s health, and Tanya Simon-Hall, founder of The Adeno Gang and women's health campaigner.
What is adenomyosis?
First up, let's run through what exactly adenomyosis is. 'Adenomyosis is a condition in which the cells like those that line the womb build up in the muscle of the wall of the womb,' says Dr Toledano.
While it's a little-known condition (it was only added to the NHS website last year), it impacts around one in 10 women of reproductive age.
What are the symptoms of adenomyosis?
'The main symptom is terrible pain before and/or during a period - this can be so bad that it is associated with fainting and dizziness. If someone is getting agonisingly painful periods, then it really can’t be much else. Heavy bleeding may co-exist but it is the painful periods that points to adenomyosis,' says Dr Toledano.
For Simon-Hall, symptoms of her adenomyosis can be debilitating. 'I couldn't go to work and it affected me taking and picking up my son from school. The symptoms were severe back pain and shooting pains down my legs. My stomach felt really heavy, like I was carrying a bowling ball around,' she says.
Does pregnancy cause adenomyosis?
According to the NHS, you may be more likely to develop adenomyosis if you are over the age of 30 and have given birth.
'Adenomyosis is thought to occur more frequently after pregnancy and childbirth due to the uterine lining undergoing hormonal changes and trauma during these two stages,' explains Dr Amit Shah, a gynaecologist and co-founder of Fertility Plus.
'As pregnancy and childbirth can lead to both the stretching and weakening of the uterine lining, it becomes a lot more susceptible to developing adenomyosis. In addition, the hormonal fluctuations that occur during pregnancy and postpartum are also seen to potentially play a role in the development of the condition.'
Is it safe to get pregnant with adenomyosis?
If you already have adenomyosis before pregnancy, it can make sense that you are worried about your pregnancy. 'Adenomyosis can affect how the fallopian tubes function which has a negative effect on fertility. It is, however, entirely preventable with early diagnosis which is why we are so passionate about educating women that if they are suffering agony periods, they should seek help,' says Dr Toledano.
Some studies have found a higher risk of pregnancy complications in women with adenomyosis. A 2023 paper that studied 7608 pregnant women with adenomyosis found that risks included premature birth (a 42% higher risk than in the normal population) and restricted intrauterine growth (reflecting a risk 25% higher than in the normal population).
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However, other studies suggest that pregnancy and childbirth result in a reduced progression of adenomyosis symptoms. 'Due to the hormonal changes people experience during pregnancy - notably high levels of progesterone - adenomyosis symptoms can sometimes be suppressed,' explains Dr Shah. 'Additionally, during pregnancy, the uterine lining may undergo changes that can improve symptoms, however, the exact mechanisms behind this are not yet fully understood.
'It’s crucial to to note that this suppression is not guaranteed for all individuals with adenomyosis, and the condition may persist or worsen in some cases regardless of pregnancy.'
How to get pregnant with adenomyosis:
Just like in any pregnancy journey, the first step to a healthy pregnancy with adenomyosis is to look for support. 'By consulting with a reproductive endocrinologist or a fertility specialist, you will be able receive personalised advice and treatment options tailored to your individual situation,' says Dr Shah. 'Be open to the various treatment options that come up, and keep in mind that there is no one ‘right’ way to embark on your conception journey. Depending on the severity of symptoms and their impact on fertility, your healthcare provider may recommend various options, such as hormonal therapy, surgery, or assisted reproductive technologies like in vitro fertilisation (IVF).
'By educating yourself on adenomyosis and the options you have when it comes to fertility treatments, you will be able to better advocate for yourself and your needs throughout the process too. Don’t be afraid to ask questions either.'
Alongside that, supporting your general health is important to maintaining a healthy pregnancy. 'It’s so important that you maintain a healthy lifestyle to optimise your fertility. Regular exercise, a balanced diet, finding outlets and ways of managing stress that feel aligned with you and avoiding smoking and excessive alcohol consumption will collectively work to support your reproductive health.
'As adenomyosis can sometimes affect fertility, it's crucial to openly discuss the potential challenges you may come up against and make sure you have a great support system around you to take care of your mental health too.'
'I was diagnosed with adenomyosis - and now campaign for women's health'
Simon-Hall had her child in 2012 and was diagnosed with adenomyosis eight years later.
'I think I had always had normal periods, but I started experiencing my severe symptoms around 2020, when I was 33. I was sent for a scan by my doctor but it was during the chaos of Covid, and my papers got lost, and I never received a diagnosis. I went back to my doctor to say I was still suffering, I was struggling to work and get up and do normal things. They sent me for another two scans, one of which showed endometriosis and the other showed adenomyosis. I've since seen some of my old medical notes and it turned out that I was actually diagnosed with endometriosis in 2014 after a miscarriage, but I was simply never told about it.
'This time round, when they did tell me what I had, they also said to simply not worry about it. I guess that's why I've embarked on an awareness journey and have started campaigning, as I was in debilitating pain and had to read up on the condition myself. It was made even trickier as, at the time, adenomyosis wasn't on the NHS website. I would go to work and tell my employer why I couldn't work and then they'd look it up and not see any information about it, so it was hard to explain to people.
'Having previously had a stroke and having a blood clotting disorder, I can't take some of the treatments for adenomyosis. I know other women have tried the Mirena coil and some say that it works, some say that it doesn't. But the only treatment we know for adenomyosis right now is a hysterectomy, which I could have but I don't want to give up my womb yet.
Right now, my work is about awareness. I am working with the government on the Women's Health Strategy and I run a support group which is called The Adeno Space, which is where women with adenomyosis and other womb conditions can come to feel seen and heard by others who are going through the same thing. I also teach mental health workshops in schools as I saw a gap between young people and what they know about menstrual health and what as older women knew, so I talk about the signs and symptoms that they need to be aware of that are not normal to change the stigma.'
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