The road to adenomyosis by Cara Walker
The road to adenomyosis
The forgotten cousin.
The subtle culprit.
When I went in for my first deep-infiltrating endometriosis ultrasound, I did not expect to come out and be told I had adenomyosis. I was barely 22, and all I had heard about this condition was that it was rare, usually only happened to people in their 40s post pregnancy, and was so awful only a hysterectomy would help. Being followed up with “your fertility looks fine so far though” “we can put in a mirena to keep it that way” was not particularly reassuring to someone who still felt like if she fell pregnant she’d be shipped off to be on an MTV episode. More than two years later, I look back on that terrified girl, sobbing as she walks back to the car, and all I want is to wrap my arms around her.
Now, I know that adenomyosis ISN'T uncommon, and obviously it occurs in young people. I don’t have to have a hysterectomy, and if I do want to have one later on, that’s still an option. For a condition with a prevalence rate of up to 35 per cent of women too many people have never heard of it before. “Remind me what that is again?” say a few healthcare providers. “Don’t you mean endometriosis?” says a colleague. Before my diagnosis I had only come across mentions of adenomyosis very briefly when researching endo. Those mentions were by and large particularly doom and gloom. There is also somewhat of a cultural tendency to dismiss any diagnosis that hasn’t resulted from a hysterectomy, which still can feel belittling on my bad days. However there is hope. As technology improves so do options for diagnosis. I had countless transvaginal ultrasounds that never picked up on my condition, it was not until a gynaecologist (who had conducted research on ultrasound techniques to find endometriosis and other gynaecological lesions) performed the scan that it was identified. With increased funding for advanced ultrasound and more training for radiologists, sonographers, and other medical specialists, access to these scans is getting better every day. There is a long way to go, and we need to be talking about these conditions, not just endometriosis in wider society. The conversation around endo has paved the way for a broader conversation around whole body disease, gynaecological and endocrinological conditions like adenomyosis and polycystic ovarian syndrome. One day we will be in a place where these conditions are as discussed as diabetes or dementia, you and I are a part of that journey.
Signs and symptoms of adenomyosis:
Severe menstrual cramps
Prolonged and heavy periods
Chronic pelvic pain
Pain associated with sexual intercourse
Pressure symptoms on the bowel and/or bladder
Feelings of abdominal pressure, bloating, and/or tenderness
Lower back pain, particularly when radiating down the inner thighs
Infertility and/or recurrent miscarriages
I am lucky enough that my body accepted the mirena within a couple of months, and that it works well at suppressing many of my symptoms alongside a progesterone-only pill. Though I still struggle on almost a daily basis, the degree of pain is greatly reduced. Like endometriosis, adenomyosis is significantly correlated with chronic pelvic pain, and the best treatment modality is multidisciplinary care. The more we do to enhance accessibility to multidisciplinary healthcare, the better off people with chronic pelvic pain (regardless of cause) will be.
Management options for pelvic pain associated with adenomyosis:
Pelvic floor physiotherapy
Complementary therapies like acupuncture or naturopathy
Heat relief
Magnesium supplementation
Nutrition and dietetics
Treatment from a pain specialist
Massage
