Adenomyosis Advice Association
Adenomyosis Advice Association
advice, support and information on adenomyosis
advice, support and information on adenomyosis
Welcome
Welcome
Apparently adenomyosis is a common gynaecological condition. In my experience however, after experiencing debilitating migraines, being sent for blood, abdominal, bladder and bowel tests, and seeing various specialists (even having a brain scan) since the age of 16, not one medically qualified person mentioned the existence of the condition to me.
Eventually, after suffering chronic and constant pelvic pain and anaemia, and physically changing shape so much that only maternity clothes were comfortable, a gynae nurse called upon by a radiographer for a 'second opinion' of yet another scan uttered the infamous words that changed my life forever "I can see what it is, it's benign, it is spreading across your uterus and it's called adenomyosis".
I was relieved, a diagnosis! Subsequently, it seemed my gynaecologist was aware of the condition, but explained how hard it was to diagnose. Not being medically qualified, I started to do my own research on-line to find out more, and noted there was limited information available to help me understand the condition that I was newly diagnosed with.
My particular experience of this condition has affected my family, home and work life considerably. When I needed support and advice there was little available. I was shocked at the lack of information and research available to read, to enable me to manage the extreme symptoms despite the apparently common occurrence of adenomyosis. I battled on, on my own and spent literally months coming to terms with the fact that ultimately I would need a hysterectomy.
This experience lead me to think of setting up an advice group and indeed this web site, to create an awareness at least of the symptoms of the condition. Personally, I had to really push for answers, a diagnosis and support. It was physically and emotionally exhausting.
I wanted to make others aware that you do not have to suffer alone with this particular condition. At the lowest points of my illness I felt frightened, distressed and I wanted my life back. Ultimately having to decide to have a hysterectomy in my 30's was a BIG, but very necessary decision for me.
According to the National Health Service in the UK, it is estimated one in ten women are suffering from adenomyosis and diagnosis on average can often take as much as ten years through scans and confirmation - post surgery. More rersearch into the genetic and other causes of adenomyosis can only be a good thing, since adenomyosis seems indiscriminate in terms of age, and can occur in women who have had no children or any trauma to their womb.
The Adenomymosis Advice Association launched the first global digital survey in 2017, the results of which have been published on the YouTube channel and distributed to the Association's 400 clinicians worldwide. These clinicians form the panel of the Adenomyosis Awareness Network. The panel are themselves eager to raise an awareness and are in some cases are already carrying out further studies and research into the condition. If you would like to be included in future studies, please send a message and you will be sent a link to complete the questionnaire.
Clinicians in the fields of gynaecology, fertility, endocrine, bladder, bowel and oncology are very welcome to join the LinkedIn Adenomyosis Awareness Network to see training videos and materials relating to identifying adenomyosis and to network with other clinicians to research further into the causes of this condition. This group is also open to those working in the occupational health and insurance institutions to create an awareness into the fact that once hysterectomy has taken place, the condition will not return and the patient is free of adenomyosis and will be able to go back to work and live a pain and symptom-free life.
Moving forward, earlier detection is the key. Regular estrogen testing for women at the time of a smear test might in some way detect the likelihood of adenomyosis, but family doctors must be made more aware of the symptoms. Many women in their late teens and early twenties confirm that they are being diagnosed with the condition. Highlighting potential reproductive problems earlier will prevent the need for expensive diagnostic tests, major surgery and infertility treatments further down the line for this and other estrogen dependant diseases such as cancers (anywhere) in the body.
From the volume of visits to this website and the various social media pages, I feel there is an urgent and genuine need to raise the profile of this condition further in terms of media reportage. Endometrosis is now well known, but over the last nine years, despite the NHS and other globally respected organisations including more information on their websites and written material, adenomyosis still needs highlighting more.
In 2020 we brought adenomyosis to the attention of Parliament here in the United Kingdom during Rare Disease Day. The campaign also had excellent support from the media organisation ITV during April is Adenomyosis Awareness Month We look forward to more proactive work being done nationally and internationally by clinicians worldwide to help more women get the diagnosis and support that they need.
In 2022 the UK's Women's Health Strategy was published with a ten year plan including support and research into adenomyosis.
In 2023 the UK's National Health Service dedicated a page dedicated a page specifically for adenomyosis.
Moving forwards
Moving forwards
I hope the information that I have put together here will help others who have recently learned that they have, or have yet to be diagnosed with this condition. Families, employers and even GP's may not yet be aware of adenomyosis. Always remember, the condition is very real even if those around you have not heard of it, or cannot yet see a change in your appearance. Ultimately, if you sense something is wrong, don't ignore your symptoms... keep going back to your GP/Consultant/Surgeon until you get answers!
The Adenomyosis Advice Association website and Facebook page is monitored daily. If anyone wishes to link their website to support this cause, either in relation to help groups or commercial products that can be used to support and ease the condition etc, please feel free to contact me via the 'Contact' page or join us on Facebook or Twitter and you will be added to the 'Thank you' page in recognition of your supporting the global adenomyosis awareness campaign.
Please note the Adenomyosis Advice Association does not endorse any specific medication and all advertisement SPAM which is directed to the site or any of the other media platforms will be removed accordingly.
Finally, and above all, there is life after adenomyosis!
Wishing you very good health and happiness,
Danielle
Danielle
