Adenomyosis
Adenomyosis impacts at least 1 in 10 women and people with a uterus – that’s at least 158,660 patients in Wales. Despite this, few people have heard of it – even those living with it.
This page provides information on adenomyosis and our work to improve awareness of this health issue.
The following information is based on the lived experiences and priorities expressed to us by our community. If you need medical/health advice, please contact a GP or medical professional. Read our medical disclaimer
What is adenomyosis?
- Adenomyosis occurs when the lining of the uterus (womb) starts growing into the muscle in the wall of the womb. This can affect the whole womb or just one part of it.
- It is more commonly diagnosed in women over the age of 30 but can affect anyone who has a uterus.
- Symptoms can include very heavy and painful periods, bloating and a feeling of heaviness or fullness in the tummy, backache, upper leg ache, fatigue, and painful sex. Symptoms like these can have a big impact on daily life and you should always seek the advice and support of a healthcare professional if experiencing them.
Adenomyosis is commonly seen alongside Endometriosis and fibroids, and can share similar symptoms. Like other gynaecological conditions, many people don’t realise they have adenomyosis or are sometimes wrongly diagnosed, and diagnostic delays persist.
More information about Adenomyosis symptoms and treatments can be found at on the NHS Wales website here.
What are we calling for?
Our overall aim is to raise awareness of this common but poorly understood condition
Adenomyosis impacts at least 1 in 10 women and people with a uterus – that’s at least 158,660 patients in Wales. Despite this, few people have heard of it – even those living with it.
There is also a historic lack of training and exposure to the condition among doctors – and even those training to become gynaecologists. This is paired with a historic lack of research and data when in comes to health issues which predominantly or uniquely affect females, contributing to the lack of reliable information.
By raising awareness of adenomyosis, we can help in driving improvements in diagnosis and treatment of the condition in Wales.
In Wales, people with adenomyosis often experience delays in diagnosis and treatment
Firstly, a lack of awareness of adenomyosis means that it can take people longer to seek help, for a number of reasons:
- Gynaecological conditions often come with symptoms that can be hard to discuss, or are considered normal and ‘part of being a woman’
- Menstrual wellbeing education doesn’t always highlight what is considered normal and what should be investigated further.
When seeking help, many of those living with adenomyosis will encounter significant barriers:
- Their symptoms may be normalised or dismissed by healthcare professionals who lack training on adenomyosis, or attributed to other conditions such as endometriosis, which itself has a long diagnostic delay.
- Those who are investigated for endometriosis or other menstrual or gynaecological issues will often have ‘nothing found’ during diagnostic tests and surgeries, and are then discharged – all whilst living with the debilitating symptoms of adenomyosis.
- Although scans can sometimes identify adenomyosis, at present, the only way to properly diagnose the disease is by carrying out tests on the uterus after a hysterectomy. This is currently the only definitive cure for the condition.
- Treatments are limited to hormonal contraceptives, the coil, and pain-killers like Non-steroidal anti-inflammatory drugs (NSAIDs) such as ibruprofen. Some patients are offered endometrial ablation (where the lining of the womb is destroyed), but those with deep infiltrating adenomyosis may find this makes their symptoms worse.
We need to:
- ensure that information about adenomyosis is available in Wales, including from healthcare professionals, and accessible for those who need it
- tackle the taboo, shame and stigma that surrounds diseases involving painful periods, which can be a barrier to accessing help, support, and healthcare when we need it
- encourage investment in training and research on topics like adenomyosis from those in the position to create improvements within our health systems.
Our champion: Donna B
“Like so many other FTWW members, I have experienced symptoms related to my periods that were normalised and dismissed for such a long time that I now have additional health issues as a result.
I was eventually diagnosed with endometriosis, but my symptoms persisted after surgery, resulting in my hysterectomy. I was very lucky to be able to have my son before going through with this final option.
I was very lucky to be able to have my son before going through with this final option. So many others are unable to have children or have to go private to access the healthcare they need. In the home of the NHS, no one should be forced to do this.
Due to my health issues I had to leave employment and finding my way back into work is incredibly hard – largely because many employers don’t understand the impact ‘women’s health’ conditions can have.”
What have we achieved?
We raise awareness through events, media, training and fundraising
- We campaigned for information about Adenomyosis to be publicly available in Wales
- We ran a successful petition to the Senedd to ‘Instruct NHS Wales to add Adenomyosis to its 111 A-Z webpages’
- This received media coverage from ITV Wales
- Cabinet Secretary for Health and Social Care, Eluned Morgan, requested staff to enact it as soon as it came to her attention
- We received support from Sioned Williams MS, who raised a question in the Senedd regarding the campaign, and wrote about it for the Western Mail.
- We ensured information about adenomyosis was included on the endometriosis.cymru website in recognition of how often the two conditions occur together in patients.
- We’ve created a bi-lingual leaflet raising awareness of our adenomyosis campaign.
We take part in consultations, advisory boards and co-production of healthcare
- We are working with the national clinical Gynaecology Implementation Network in Wales to improve care for patients with non-cancerous gynaecological conditions like adenomyosis.
- We included a chapter on adenomyosis in the Women’s Health Wales Coalition’s report to the Welsh Government, ensuring it is included in the 10-year NHS Wales Women’s Health Plan.
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Adenomyosis stories
Advocating for yourself or someone else
Many women find it difficult to discuss health issues and seek support, even if these health issues are having a significant impact on their lives.
We're working with our community to develop tools and tips to help women to speak up, and provide guidance for people who would like to support their loved ones, friends, colleagues or patients who are living with health conditions.
Useful links and documents
FTWW's bi-lingual Adenomyosis leaflet
This flyer provides a brief overview of our work in this area and why it is needed
Making the Case for Better Endometriosis Treatment in Wales
A report compiled by FTWW
Women's Health Wales: A Quality Statement for the Health of Women, Girls and those Assigned Female at Birth 2022
Read more about our recommendations to the Welsh Government in this report by the #WomensHealthWales coalition
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