"You do know you have adenomyosis, right?" said a doctor off-handedly to Aman Virdi, a 41-year-old in London, when she was having an internal ultrasound a few years ago. Although Aman had already been diagnosed with endometriosis, this comment came as a complete surprise. When she got home she trawled the internet for scraps of information about the condition but came up empty.
It may be unfamiliar to many but adenomyosis is thought to affect one in 10 women, according to North Bristol NHS Trust. Yet a quick Google search turns up limited information about the condition, among a sea of contradictory blogs and articles.
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What we do know about adenomyosis is that it occurs when the cells that normally form the lining of the uterus grow into the muscle wall of the uterus. Dr Fatima Husain, consultant gynaecologist, obstetrician and spokesperson for the Royal College of Obstetricians and Gynaecologists (RCOG), explains: "Under the influence of the hormonal cycle, as a woman [with adenomyosis] approaches her period, those [endometrial] glands swell up and bleed so the wall of the uterus becomes painful." Much of the confusion surrounding the definition of the condition comes from it being mistaken for or mixed up with endometriosis. Although they can share similar symptoms, endometriosis is when tissue similar to that found in the lining of the womb grows outside the uterus.
Symptoms of adenomyosis often include heavy periods, debilitating pelvic pain and an impact on the normal functions of the bladder and bowel due to the enlarged uterus. These symptoms can severely affect the quality of life of those with adenomyosis: bloating may make it painful to wear certain clothes and sleeping might be difficult or impossible due to the relentless agony, which may also prevent sufferers from carrying out day-to-day tasks.
Dr Husain explains that when it comes to diagnosis, the signs of adenomyosis are subtle and require very high definition ultrasound and someone with skills in gynaecological ultrasound who can diagnose from the images produced. It’s only recently that research has been conducted into wombs removed through hysterectomy to discover the condition itself. Paired with the advances in technology needed to detect adenomyosis, progress in expanding our knowledge of the condition has been slow.
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"I do think there is a lack of research. I am pleased to see we have seen a lot more papers come out about the way we can image [adenomyosis] and how we can treat it but research funding for women’s health has always been low," adds Dr Husain.
This severe lack of research leaves those with adenomyosis no choice but to turn to online communities, not just for information but for support and tips on pain management.
Aman tells R29: "Ninety-five percent of the info I know about adeno is from social media, because the doctors I’ve seen know very little about the disease. GPs have practically zero knowledge on it." Among the information that Aman was able to decipher online were the differences between her adeno and endo symptoms.
"Many general gynaecologists I’ve seen would just say, 'It's the same as endometriosis.' They told me the treatments I was having for endo would manage the pain I was experiencing from my adenomyosis, which simply isn’t true." Aman had already undergone excision surgery (often referred to as the gold standard for endo treatment) but was still in dire pain. She says her adenomyosis diagnosis helped her to understand why the surgery didn’t seem to work for her.
The diagnosis also helped her to understand the different treatment paths. "I didn’t know there were different types of adeno," says Aman, "and this is something I learned from my research on social media, which I then took back to the doctor to discuss. Another doctor had said to me, 'What difference does it make?' but I also found online that it’s possible for different types of adeno [whether diffuse or focal] to have different possibilities for treatment."
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Charlotte is another adenomyosis sufferer who was diagnosed when she was 23 after nearly eight years of pushing for answers. In the end she turned to private healthcare for her diagnosis after being incorrectly diagnosed with IBS. "My specialist was great but it wasn’t affordable to continue seeing her." Charlotte was lucky to find support for her treatment but actual information on the condition came through Instagram. "One doctor I’ve spoken to actually had adenomyosis herself so I found her amazing for help with treatment [but] information-wise, I have relied mostly on Instagram." She adds: "It’s a bizarre feeling that there’s something going on inside my own body that I can’t even research due to lack of information out there."
Aman and Charlotte use their Instagram platforms to share helpful resources and their experiences with adenomyosis after being inspired by the useful information they found online themselves. Charlotte notes: "There’s brands I now rely on for help with pain that I’d never have heard of without Instagram." It is important to them both that they only share facts they can verify so that they don’t spread misinformation.
Although many people living with adenomyosis find comfort in engaging with social media discourse around the condition, both Aman and Charlotte advise proceeding with caution as misinformation can be just as harmful as no information. As Aman says: "Incorrect definitions are so frustrating. If we can’t even get the definition right, what hope have we got?"
Neelam Heera, founder of charity Cysters, which advocates for those with reproductive and mental health issues, feels passionately about working to foster relationships between medical professionals and communities so that the correct information is shared and accessible to all. Neelam explains that the lack of information about adenomyosis "leads to feelings of isolation, feeling unheard and being gaslit. It also increases diagnosis times as people are reluctant to come forward to speak to healthcare professionals, feeling their issues just amount to a 'bad period'."
Neelam is concerned about the number of "misinformed but well-meaning" posts across social media, including fad diets and recommendations for cosmetic treatments as a way to 'treat' pain, and is calling for "an intersectional and collaborative approach to health inequality within this space".
Raising awareness of adenomyosis is only the tip of the iceberg. There urgently needs to be more research, understanding and support for those living with this common condition. It is less than ideal for those dealing with the pain it causes to have to rely on social media platforms as their main sources of information but for many it remains the only option.