At least one in 10 women live with adenomyosis, a womb condition which can cause heavy, painful and irregular periods with one sufferer saying her pain got so bad it she felt like she had a \u00ab\u00a0chainsaw\u00a0\u00bb inside her.<\/p>\n
Mathilde Barker, a content creator from Surrey who has both adenomyosis and endometriosis, said: \u00ab\u00a0When I was at my worst, it genuinely felt like I had a mass in my uterus, and that it was dragging behind me.\u00a0\u00bb<\/p>\n
Adenomyosis is a condition where the lining of the uterus begins to grow into the muscle of the womb.<\/p>\n
A spokesperson from the Department for Health and Social Care told the BBC: \u00ab\u00a0It is deeply concerning that so many women feel dismissed when they come forward with pain.\u00a0\u00bb<\/p>\n
Warning: This article discusses distressing themes<\/p>\n
Adenomyosis shares a lot of symptoms with endometriosis, but the two conditions are different.<\/p>\n
With endometriosis, the cells grow outside the womb, and can appear in other parts of the body, whereas with adenomyosis they only grow inside the womb.<\/p>\n
Barker has over 500,000 followers across her Tik Tok and Instagram and said very quickly her audience \u00ab\u00a0became these people with these symptoms\u00a0\u00bb.<\/p>\n
The 22-year-old was diagnosed with endometriosis aged 19, following laparoscopic (keyhole) surgery, and adenomyosis two years later.<\/p>\n
Life with the condition is frustrating for lots of women.<\/p>\n
Lauren Buckland, 36, said she gets regular random \u00ab\u00a0stabbing\u00a0\u00bb pains in her uterus, lower back, hip and pelvis.<\/p>\n
She said: \u00ab\u00a0[Once] I was walking home from work, and I was in tears of pain and I didn’t know what it was.<\/p>\n
\u00ab\u00a0This is my body and it’s not working how I’d like it to work, but I’ve got to work with it.<\/p>\n
\u00ab\u00a0It’s a bit frustrating, but it’s just being a woman, isn’t it?\u00a0\u00bb she said.<\/p>\n
Emma Blackburn, from Broadstairs in Kent says she is in constant pain.<\/p>\n
She said: \u00ab\u00a0All of a sudden it’ll be what I can only describe as sort of like a labour pain… it’ll just shoot into my pelvis.\u00a0\u00bb<\/p>\n
Blackburn has adenomyosis, endometriosis and fibromyalgia and said she plans her life around her menstrual cycle.<\/p>\n
\u00ab\u00a0I pass clots every single cycle, ranging from anything like a 5p to a 50p,\u00a0\u00bb she said.<\/p>\n
The 34-year-old says she wishes more people were better educated on women’s health conditions, \u00ab\u00a0especially the impact that it has on both our physical and mental health\u00a0\u00bb.<\/p>\n
Lesley Salem, founder of the workplace training organisation Over the Bloody Moon, said: \u00ab\u00a0We want to make sure that hormonal health and menstrual health isn’t a barrier.\u00a0\u00bb<\/p>\n
She says there is a lack of awareness around menstrual health conditions and making changes stem from education.<\/p>\n
Salem acknowledged there is still a stigma in the workplace which causes many women, especially those early on in their careers, to feel fear around sharing their struggles.<\/p>\n
Experts agree more education and research is needed.<\/p>\n
Dr Rebecca Mallick, a consultant gynaecologist at University Hospitals Sussex, said: \u00ab\u00a0It all starts with education on all levels.\u00a0\u00bb<\/p>\n
She said people should be discussing menstruation from an early age so it’s common knowledge that \u00ab\u00a0periods which stop your day-to-day functioning\u00a0\u00bb are not normal.<\/p>\n
Historically, adenomyosis has been a condition which is hard to diagnose, as a hysterectomy was the only way to properly analyse the womb.<\/p>\n
It is also not always picked up on scans.<\/p>\n
Research is taking place to try and change this.<\/p>\n
Dr Marianne Watters is a clinical researcher, with Wellbeing of Women, exploring whether adenomyosis can be identified via blood samples.<\/p>\n
She says in the future women may be able to identify the condition themselves via an at-home testing kit.<\/p>\n
\u00ab\u00a0I hope that in the future we’ll be able to improve on the ways that we currently diagnose,\u00a0\u00bb she says.<\/p>\n
\u00ab\u00a0It is really surprising that we don’t know more about this condition and that it’s not more openly talked about in the public.\u00a0\u00bb<\/p>\n
Zara Dedman, 38, from Kent, says being \u00ab\u00a0fobbed off\u00a0\u00bb by doctors has had a huge impact on her mental health.<\/p>\n
\u00ab\u00a0Each day, every month, I am having those depressive thoughts, I am having those anxieties around everything\u00a0\u00bb, she explained.<\/p>\n
She said she found herself having to explain the condition to the medical professionals she had gone to for help.<\/p>\n
\u00ab\u00a0When I’ve gone to appointments consultants, doctors, nurses have asked ‘what does that mean?’, ‘What is that?’.<\/p>\n
\u00ab\u00a0I’m then having to educate them on what adenomyosis is\u00a0\u00bb, Dedman said.<\/p>\n
Lillie Bleasdale, a running coach and content creator from Maidenhead, said she found herself having to advocate for her health to get a diagnosis.<\/p>\n
She told me that doctors said: \u00ab\u00a0maybe it’s in your head.\u00a0\u00bb<\/p>\n
A spokesperson from the Department for Health and Social Care told the BBC: \u00ab\u00a0Heavy and painful periods are too often normalised, despite being recognised as one of the early warning signs of gynaecological conditions such as adenomyosis.<\/p>\n
Bleasdale says she now uses her social media platforms to help other women learn and advocate for themselves.<\/p>\n
She said receiving a diagnosis was \u00ab\u00a0the most relieving part of the process.\u00a0\u00bb<\/p>\n
Endometriosis UK data, from 2025, showed that 580,000 women in England were on the non-cancerous gynaecology waiting list.<\/p>\n
Eleni Moutesidi, from Romford, has been diagnosed with adenomyosis, endometriosis and polycystic ovary syndrome (PCOS) and has had 11 surgeries for her gynaecological conditions, including a hysterectomy where her entire womb was removed.<\/p>\n
She says she still lives in constant pain, is always exhausted and barely leaves the house.<\/p>\n
\u00ab\u00a0I don’t have the strength to keep fighting anymore,\u00a0\u00bb she told her family.<\/p>\n
\u00ab\u00a0We don’t feel heard about.<\/p>\n
\u00ab\u00a0Adenomyosis might be invisible, but its impact is not.\u00a0\u00bb<\/p>\n
Her advice to medical staff is: \u00ab\u00a0Trust them when they tell you ‘I am in pain’.\u00a0\u00bb<\/p>\n
If you have been affected by the issues raised in this story, information and support can be found via the BBC’s Action Line website.<\/p>\n
Follow BBC Surrey on Facebook, on X, and on Instagram and listen to BBC Radio Surrey on Sounds. Send your story ideas to southeasttoday@bbc.co.uk or WhatsApp us on 08081 002250.<\/p>\n","protected":false},"excerpt":{"rendered":"
At least one in 10 women live with adenomyosis, a womb condition which can cause heavy, painful and irregular periods with one sufferer saying her pain got so bad it she felt like she had a \u00ab\u00a0chainsaw\u00a0\u00bb inside her. Mathilde Barker, a content creator from Surrey who has both adenomyosis and endometriosis, said: \u00ab\u00a0When I […]<\/p>\n","protected":false},"author":0,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":{"0":"post-10148","1":"post","2":"type-post","3":"status-publish","4":"format-standard","6":"category-uncategorized"},"_links":{"self":[{"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/posts\/10148","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/types\/post"}],"replies":[{"embeddable":true,"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/comments?post=10148"}],"version-history":[{"count":0,"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/posts\/10148\/revisions"}],"wp:attachment":[{"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/media?parent=10148"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/categories?post=10148"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/tags?post=10148"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}