What is Adenomyosis?
What will it take for Adenomyosis to finally be taken seriously?
‘I’m sorry you have what?’, ‘Um, how do you spell that?’, ‘I haven’t heard of that before, what is it?’ These are a few of the common phrases I often hear when I mention I have Adenomyosis. April is Adenomyosis (add-en-o-my-OH-sis) awareness month and boy is this awareness needed. This often-unknown uterine disease impacts 20-35% of people with uteruses, yet it still flies under the radar. In this article, we’ll discuss everything you need to know about Adenomyosis and what you can do if you suspect you have the disease.
What is Adenomyosis?
Adenomyosis is a uterine condition, where the lining of the uterus known as the endometrium penetrates the uterus walls known as the myometrium[1]. This causes chronic pain and an array of symptoms. The disease can present as both focal and diffuse. Focal Adenomyosis is often referred to as adenomyoma and is when the endometrial tissue forms inside the uterine wall. The most common form, diffuse adenomyosis, is when the tissue gets distributed throughout the uterine wall, causing it to become thick and spongy[2].
What are the symptoms of Adenomyosis?
The main symptom of Adenomyosis is heavy and prolonged menstrual bleeding that can lead to anaemia and severe uterine cramps. Pain can be felt under the belly button, down the lower back and radiate into the thighs and be present throughout the cycle. Symptoms also include painful sexual intercourse, a pressure or heaviness feeling in the pelvic area, irregular bleeding, painful urination or bowel movements and overwhelming fatigue, it can also lead to issues with fertility[3].
What causes Adenomyosis?
Unfortunately, there is still is no known cause for Adenomyosis.
How can Adenomyosis be diagnosed?
Adenomyosis can only officially be diagnosed by a histology report after a hysterectomy, which can make accessing a diagnosis tricky. It can be clinically diagnosed through a transvaginal ultrasound or pelvic MRI, but it’s important that whoever reviews the imaging is a specialist who is aware of the presentations of Adenomyosis as it can often be overlooked or missed.
What treatment options are available for Adenomyosis?
A hysterectomy is the only way to cure for Adenomyosis, but as this operation involves removing the uterus it is not one to be entered into lightly. There are other ways you can manage your pain including hormonal medications, anti-inflammatories, medication to reduce bleeding during your period, CBD or medical marijuana (if it’s available where you’re based) or pelvic floor physiotherapy can also help manage pain symptoms. It’s important to note that medication cannot treat the disease but can help manage the pain.
Is Adenomyosis related to Endometriosis?
Adenomyosis is often referred to as endometriosis’s sister disease, but they are completely different. Endometriosis is a chronic inflammatory disease where tissue similar to the endometrium is found in areas throughout the body, whereas Adenomyosis is where the endometrium grows into the uterus wall and is a uterine disease. Although they are different, many of the symptoms can overlap, with patients having to decipher between the two by tracking their symptoms. It’s important that if you have endometriosis that Adenomyosis is investigated, as it is estimated 40% of people with endometriosis have Adenomyosis.
Why is so little known about it?
Similarly, to many diseases that seem to impact people with uteruses, Adenomyosis isn’t something that is often talked about, yet it is incredibly prevalent and causes debilitating pain that impacts millions of people. There is no official Adenomyosis charity, and the NHS doesn’t even have a page dedicated to the disease, making it hard to access information and support if you receive a diagnosis.
Lack of research, understanding and awareness of the disease simply comes down to gender bias in healthcare, but there are people out there working hard to change this. On Instagram @TheAdenoProject raises awareness and shares resource and information to help people with Adenomyosis. This includes the latest research and a toolkit of resources for people with the disease. Whilst @acknowledgingadenomyosis shares her personal journey and raises awareness of the impact it has on her everyday life.
For anyone diagnosed with or who suspects they have Adenomyosis, you are not alone, your pain is real and there are options out there. Hopefully with time and more awareness Adenomyosis will finally have the recognition and support available for patients that is so desperately needed.
Sources:
[1] https://centerforendo.com/adenomyosis-is-it-really-endometriosis
Written by Sarah Rose
Sarah Rose is a freelance writer from Belfast who writes about all things pelvic pain. She uses her Instagram platform mypelvicpain to share her journey with endometriosis and raise awareness around this condition and its impact on her life. Sarah’s sole aim is to help others and ensure that no one ever has to suffer in silence again.