Dr Jana Pittman’s Ultimate Guide to Adenomyosis: Stages, Causes, Symptoms and Treatments
This article was written with Dr Jana Pittman.
Ever heard of the term adenomyosis? We know it’s a bit of a tongue-twister. But despite being a medical condition affecting many women worldwide, this painful condition remains relatively unknown.
If you’ve found yourself struggling with adenomyosis, we feel you. With symptoms like weight gain, bloating, and fatigue, adenomyosis can have a huge impact on daily life.
So, what do we know about this complex condition? We sat down with Dr Jana Pittman to arm you with everything you need to understand about adenomyosis – from its causes and symptoms to diagnosis and treatment.
What's the difference between adenomyosis and endometriosis?
Dr Jana Pittman: Let's start with the most significant similarity... it hurts. For many of those that have either endometriosis, adenomyosis or both, it can lead to a world of misery and affect your daily living.
Like endometriosis, adenomyosis is when tissue similar to the inner lining of the uterus (the endometrium), is found in the wrong place. However, with adenomyosis, the displaced tissue (endometrial glands and stroma) moves into the muscular wall of the uterus (the myometrium) instead of other places in the abdomen like in endometriosis.
Like the normal endometrium, both adenomyosis and endometriosis continue to have a cyclic activity each month. The incidence rate varies greatly depending on which diagnostic criteria is used, but it is as high as 22% in women with infertility.
Who can get adenomyosis?
There are many theories about what causes adenomyosis; however just like endometriosis, the actual cause is a mystery requiring ongoing research.
Some experts believe in the invasion theory, which is due to a lack of a submucosal layer between the endometrial and myometrial layers, leaving them in direct contact with each other for cells to migrate easily. Others believe the cells have been there since you were in your mother’s uterus or are caused by an abnormal growth of nerve fibres.
A more recent theory proposes that stem cells from the bone marrow might invade the myometrium and develop into adenomyosis deposits. Then there are genetic, infection and immune-related theories.
Research has shown that certain women are at a higher risk of developing adenomyosis if they have had surgery on their uterus, such as a caesarean section, dilatation and curettage (D&C) or myomectomy (fibroid removal).
Other risks, such as multiple births or IUD placement, can increase your risk by 1.5 times. Women with congenital (from birth) uterine anomalies like a septate uterus also have a higher chance of developing the condition. Smoking also increases your risk.
Signs and symptoms: what are adenomyosis bloating, weight gain, and fatigue?
One of the most reported symptoms of adenomyosis is ‘dysmenorrhea’ or painful periods. The pain can progress beyond cyclic pain during menstruation to chronic debilitating daily pelvic pain.
Abnormal uterine bleeding means heavy or prolonged periods or spotting before or after periods. It’s found in 40-50% of women with adenomyosis and can lead to anaemia due to excessive blood loss.
Another common symptom of adenomyosis is bloating, including a feeling of fullness, pressure in their abdomen or an increased need to use the bathroom. This is mostly due to uterine enlargement, as the uterus contains extra adenomyosis lesions. This enlarged uterus can often be felt on a vaginal exam or be labelled bulky on imaging.
Unsurprisingly, exercise can be difficult for suffers of adenomyosis. Weight gain, as a result, can be a secondary symptom to the condition due to heavy and painful bleeding fatigue.
How is adenomyosis diagnosed, and can it be missed?
Okay, let’s talk medical jargon for a second. There are several ways to classify adenomyosis, which can be a little confusing.
- Some divide it into:
- Diffuse (throughout the uterus)
- Focal (a single area)
- Nodular, or
Another group has 4 subtypes, including intrinsic, extrinsic, intramural, and indeterminate, depending on where in the uterus the adenomyosis is found. But forget that for now – let’s look at how we find out if we have it.
The first line of investigations includes a transvaginal ultrasound and MRI, which have a 72% and 77% sensitivity, respectively. If the adenomyosis is mild or focal, the uterus can be ‘normal size’; therefore, the ultrasound can miss it.
There are also different criteria used to diagnose adenomyosis. Some look at the amount of histological invasion in terms of thickness; others use clinical symptoms like pain and heavy bleeding. We also know that certain non-specific tests can be higher in women with adenomyosis and endometriosis, such as CA125. This is traditionally known as an ovarian cancer marker but can be elevated in these conditions (but this does not mean you have cancer).
Hysteroscopy is often used, a diagnostic procedure where a camera is passed into the uterus to look at the inner lining and take biopsies of the endo-myometrial junction. Sometimes the doctor will see increased hyperplastic blood vessels, changes in colour, breaks or holes in the endometrium or uneven surfaces.
What are the adenomyosis stages, and what happens if it goes untreated?
With adenomyosis stages, the pain and abnormal bleeding patterns can often worsen. This can be associated with physical and psychological stress.
Living with daily pain affects your work, relationships, and long-term health. Heavy bleeding can lead to anaemia and fatigue, not to mention the risk of becoming dependent on pain relief and the cost associated with lost work time and treatment.
Some women also suffer difficulties getting pregnant and must see a fertility specialist. Issues such as a higher risk of premature membrane rupture (waters breaking) can persist when pregnant.
So, the key here is if you have symptoms, get them checked early so that, hopefully, doctors can help before the disease progresses further.
How can you manage adenomyosis pain and symptoms?
Adenomyosis symptoms, like weight gain and fatigue, can be reduced through lifestyle habits, like:
- Yoga and meditation
- A balanced, healthy diet
- Good sleep
- Avoiding smoking
- Regular exercise
If you’re after medical options, hormonal therapy both in a pill form (often Visanne or Slinda) or an intrauterine device (Mirena) can be used.
There are also aromatase inhibitors (drugs that reduce estrogen), anti-inflammatories, and tranexamic acid (reduced level and rate of bleeding) that all be taken orally to manage symptoms.
If the adenomyosis is resistant to drug therapy, there are several types of conservative surgery that aim to remove the deposits or reduce the symptoms. Some women choose endometrial ablation (surgery that destroys the lining of the uterus), although this has a failure rate of about 20% in women with adenomyosis.
Other surgery focuses on removing the deposits and may be appropriate for women with infertility.
However, for severe and debilitating pain or heavy bleeding, the ultimate treatment is a hysterectomy, which removes the uterus entirely.
My main advice if you think you might have adenomyosis is to go and see your doctor as early as possible.