Here are some common questions and answers explaining what adenomyosis is – and what it isn’t – with sources from some of the top specialists out there referenced for you to check out.
How Do Doctors Describe Adenomyosis?
Adenomyosis is a benign uterine disorder, and patients can have a range of symptoms and presentations (and can even be asymptomatic in roughly a third of cases). It’s characterized by heterotropic (or heterogeneous, meaning different consistencies) endometrial glands and stroma in the myometrium and fibrosis of the smooth myometrium. The consistency of adenomyosis is different than that of uterine fibroids (which have a smooth and muscle-y texture).
It’s sort of like endometriosis, but inside the walls of the uterus – not external to the uterus.
What Are Potential Symptoms of Adenomyosis?
Symptoms of adenomyosis (“adeno”) can include: Chronic pelvic pain; heavy menstrual bleeding, with blood loss causing anemia and related symptoms of fatigue and dizziness; abnormal uterine bleeding; extremely painful cramping that worsens during menses; painful sex; bladder pressure; and radiating pain.
Pain may radiate up to the belly button and down the buttocks and thighs because the uterus is innervated by nerves that run along the uterine ligaments.
A heavier menstrual flow doesn’t mean that the uterus is shedding more endometrium (that’s determined by the size of the uterus and its endometrial thickness).
Who Gets Adenomyosis?
It’s not known how adenomyosis occurs, though there are several theories. As with endometriosis, retrograde menstruation is not a probable cause.
Womxn with adenomyosis often have other gynecologic conditions, such as endometriosis (particularly deep infiltrating endometriosis) or fibroids. Reports cited in one article estimate that adenomyosis cases were distributed approximately 20% among younger women (under 40) and 80% in women 40–50 years old, with most severe symptoms in the older age group. However, adenomyosis (like endo) can also affect womxn in their teens. It’s believed to be an estrogen- dependent condition.
How Do I Know if I Have Adenomyosis?
Diagnosis of adenomyosis is confirmed through pathology done involving microscopic evaluation of the uterine wall or samples taken from it. Adenomyosis may be diffuse or concentrated as an adenomyoma (which may be possible to remove via surgery like a fibroid), so, the ability to remove a sample of (diffuse) adenomyosis could be nearly impossible (meaning it’s hard to spot or identify).
A pelvic exam, transvaginal ultrasound, or MRI can help to assess suspected adenomyosis. A pelvic exam (much like the experience of intercourse) may be particularly painful or may make the area tender.
An MRI could help get you to a diagnosis by spotting adenomyomas 5mm or greater in size (along with imaging fibroids and cysts). But this is if the myometrium’s consistency is changed. An ultrasound may also identify some areas of adenomyosis if they can be imaged successfully. But, as with endometriosis, these methods of imaging are not usually specific enough to paint a full picture of a condition.
Words that may show up on imaging reports include “soft,” “bulky,” “boggy,” and “enlarged uterus.”
How Can I Get Treatment for Adenomyosis?
Adenomyosis can often be managed with non-invasive techniques like hormone therapy and pain management. For example, birth control pills and intrauterine devices (IUDs) may help with decreasing bleeding and pain.
Uterine artery embolization (UAE) is a procedure that involves using a catheter to send tiny particles to block the uterine artery (cutting off blood supply to the uterine body). It’s also used in the treatment of fibroids. A study following symptomatic adeno patients over seven years after undergoing UAE found that 82% of them avoided hysterectomy.
Surgical intervention options may include nerve-blocking techniques (like a presacral neurectomy) or hysterectomy. Unlike endometriosis but similar to fibroids, removal of the uterus to treat adenomyosis extracts the disease entirely because it occurs in the walls of the uterus. A hysterectomy is the only curative treatment.
Maya here: If you’re considering a presacral neurectomy, be sure to research your surgeon’s skill level and ask lots of questions. This is an irreversible procedure and you should weigh the implications, say, if you are planning on getting pregnant. I’m happy to chat with fellow patients about my experiences with this procedure.
Examples of Hysterectomy:
- Partial (supracervical): Removes the uterus, cervix left intact
- Total: Removes the uterus and cervix
- Hysterectomy with bilateral salpingo-oophorectomy: Total hysterectomy plus removal of the ovaries and fallopian tubes
Image credit: Duvet Days
Why Does Knowing about Adenomyosis Matter?
Since adenomyosis seems to have a relationship to other gynecologic conditions, it can be challenging to isolate or identify its symptoms – what’s endo-related vs. adeno-related, for example? Particularly because it can be hard to spot on imaging, it can be easily forgotten about or written off if doctors aren’t sufficiently trained or specialized.
If you’ve read the What Is…Endometriosis? post about endometriosis, you’ll have seen some stats on the cost of chronic conditions (an average loss of productivity of 10.8 hours a week costing up to $456 USD per week). Diagnosing and treating adenomyosis empowers womxn to better cope with chronic pain and discomfort, giving them a shot at reclaiming their time. Let’s give this lesser-known gynecologic condition a bit more attention to help doctors discern its often-elusive presence.
Some Final Thoughts
Maya here: Imagine spending a decade treating the wrong things (as was my case). Even after my first surgery for endo and fibroids, I was still very unclear and uninformed about adenomyosis and its presence in my life (literally, could not pronounce it correctly!). It was really hard to parse out what pain was related to what condition – especially with a serious back injury overshadowing my healthcare journey. Updating my symptom tracker after undergoing a presacral neurectomy helped me to get re-acquainted with my body – you can download a copy of the tracker here.
Resources & References