Introducing Adenomyosis
By Dannielle Stewart
April is Adenomyosis Awareness Month, and it’s time adenomyosis gets the recognition it deserves. Many of those effected with endometriosis also have adenomyosis, and it may be a source of ongoing pain after excision of endometriosis. Adenomyosis enjoys even less name recognition than endometriosis, and while endo awareness is starting to become a national conversation, adenomyosis is still often met with confused expressions and a lack of knowledge. At QENDO, we’re starting the conversation this April for Adeno, and so it’s time we took a closer look at all the facts. What exactly is adenomyosis, what’s in our toolbox, and what are some of the myths surrounding the disease?
Adenomyosis is a disease where the endometrium grows into the muscle of the uterus (myometrium). The person experiencing this condition suffers numerous microscopic bleeds in the muscle, during the menstrual phase of their cycle.
The symptoms of adenomyosis are often very similar to endometriosis, with heavy, painful periods being the most common. Added symptoms include referred pain to the back and down the legs, with general associated feelings of fatigue. The pain can be at least as bad as endometriosis, sometimes worse, because the patient doesn’t yet have a diagnosis. Adenomyosis may be responsible for ongoing pain after excision surgery, and is still often missed due to misconceptions that it is an illness of those in their 30s and 40s. Teens and young people can also have adenomyosis.
The diagnosis of adenomyosis is often suggested through visualisation of a bulky or irregular "bumpy" uterus, and/or tubal thickening at the point where the fallopian tubes leave the uterus, at laparoscopy. This can then be supported with MRI, which measures the junctional zone - the zone between the endometrium and myometrium (muscle wall of the uterus). This is done by a radiologist with experience in this diagnosis. Ultrasound by a tertiary scanner can also identify a number of diagnostic criteria for adenomyosis, but does not always rule out or confirm the diagnosis from ultrasound alone. Diagnostic criteria for adenomyosis that may be observed on an ultrasound include a thickening of the myometrium, increased vascularity/blood flow to the area, and a loss of clarity of where the border is between the endometrium and myometrium. As with endometriosis, negative scans do not mean you cannot have adenomyosis - a whole clinical picture must be considered that includes patient symptoms, laparoscopy findings and scans.
Finding a gynaecologist with experience specifically in adenomyosis is important.
Hysterectomy can be a curative option for adenomyosis, but it is NOT a cure for endometriosis
How Is Adenomyosis Different to Endometriosis?
Adenomyosis and endometriosis are closely related conditions, and both may be responsible for pelvic pain symptoms that may be difficult to distinguish. Endometriosis is where tissue similar to the lining of the uterus is found outside the uterus, both in the pelvis and in extra pelvic areas. Endometriosis is a whole body, inflammatory disease. A hysterectomy will not cure endometriosis because the lesions are outside the uterus and have their own immune microenvironment and produce their own oestrogen, as well as responding to circulating hormones.
In contrast, adenomyosis is a uterine disease, with the lining of the uterus invading the muscle of the uterus. The disease is confined to the pelvis. As a result, a hysterectomy is a cure for adenomyosis - however if you have both endometriosis and adenomyosis, you may still experience endometriosis related pelvic pain or symptoms post hysterectomy.
What Are the Symptoms?
Adenomyosis and endometriosis symptoms may overlap significantly. The pain experienced in adenomyosis can be just as bad as endometriosis, sometimes worse.
Pelvic pain, often a central, heavy, cramping pelvic pain that varies in intensity
Back pain
Referred leg pain
Heavy bleeding
Painful intercourse
Fatigue
The heavy bleeding associated with adenomyosis can be severe and cause other associated symptoms such as fatigue, dizziness and fainting. Like endometriosis, many people affected by these symptoms do not speak up because they assume their symptoms are normal. Very heavy, painful periods are not normal and if you are experiencing any of these symptoms you should speak with your GP.
Your Adeno Toolbox
Pain management strategies
Pelvic stretches
Heat pack
TENS Machine
Anti-inflammatories
Prescription medication in consult with your health team
Pain specialist
Food that nourishes and supports you
Ease bowel or gut symptoms
Support overall wellbeing
Women’s/menstrual health dietitian or nutritionist to find strategies tailored to your individual needs
Gentle Movement and Movement Therapies
Gentle exercise that’s right for you (swimming, walking, yoga, your favourite sport), and your energy, muscles love to move
Exercise physiologist
Pelvic physiotherapy for chronic pelvic pain and painful sex
Mental Health and Wellbeing
Your pain is not “in your head”, but it can certainly impact your mind and wellbeing
Psychology and counselling to help manage symptoms, to address and work through trauma
People in Your Toolbox
Gynaecologist
GP
Physiotherapist
Exercise Physiologist
Dietitian
Naturopath
Osteopath
Psychologist
Counsellor
Acupuncturist
Adeno Myths
Adenomyosis Only Affects Older Women
Incorrect. For some time adenomyosis was believed to only affect those in their 30s and 40s or beyond. This is likely because confirmation of the diagnosis was made during a hysterectomy, a surgery typically performed after childbearing age in older persons with a uterus. However young people, and even teenagers, can and do have adenomyosis. If a patient is experiencing the symptoms of adenomyosis, they are not too young to have it, and earlier management of symptoms is beneficial for quality of life
Continuous Birth Control Will Cure Adenomyosis
As in endometriosis, adenomyosis will not be cured by hormonal therapies, even when administered back to back (i.e. no periods). Some patients may find a relief from or reduction in pain or bleeding, and thus hormonal therapies can be helpful in an individual’s management plan, however they will not cure the disease itself. Hormonal birth control including the Mirena IUD may have an impact on the junctional zone, however any regression is temporary and progression will often occur when these medications are removed (e.g to achieve pregnancy, or when the side effect profile is not favourable). These therapies can be helpful for reducing pain and symptoms, thus improving quality of life, and each individual should make a decision about which treatment is right for them. However it is important to be practical about the efficacy of any treatment, and realise that they are management strategies, not a cure. Hormonal therapies may help with management of adenomyosis, but like endometriosis they are not a cure.
If You Have Adeno, You Can’t Get Pregnant
Adenomyosis can certainly have an impact on fertility, but like endometriosis, a diagnosis of adenomyosis is not a diagnosis of infertility. Having adenomyosis does not automatically mean you will have issues with fertility or pregnancy. Dr Graham Tronc addresses the ways in which adenomyosis may affect fertility and pregnancy:
Adenomyosis can certainly affect fertility. It can cause subfertility (delay); recurrent miscarriages, premature labour and premature rupture of the membranes. Several articles in the literature address this issue
From Endometriosis 101 for the Significant Other
Adenomyosis has been associated with implantation failure in IVF (Kelton et al, 2011), and narrowing of spiral arteries within the myometrium which can contribute to obstetric complications in pregnancy (Brosens et al., 2013). Ongoing studies that include larger cohorts and more specifically investigate this issue will provide more information on the impact of adenomyosis on fertility and pregnancy. Speak with your specialist about any concerns regarding fertility.
This April, let’s start the conversation around adenomyosis. Adenomyosis is estimated to be as common as endometriosis, however it is an area that is often ignored in research and so there is a high variance in the literature regarding just how many people have adeno. Adenomyosis often does not receive the same attention in research and academia as endometriosis (which already receives less than diseases of similar prevalence such as asthma and diabetes), and as a result there is still much we don’t know or understand about adenomyosis and how to treat it. For many, adenomyosis is responsible for debilitating symptoms and they don’t even have a diagnosis. Help us start the conversation this April, and visit our April for Adeno resources page for how you can be involved this awareness month.
Further Reading
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