Adenomyosis, Not So Silent, Not So Sneaky
By Aroha Liebhart
Adenomyosis, like it’s sibling endometriosis, is often described as an invisible disease, a silent disease, because there remains a number of major barriers to diagnosis, despite many of those affected by adeno experiencing debilitating symptoms, sometimes daily. Aroha Liebhart has previously shared her journey to an endometriosis diagnosis with QENDO, but today on the blog she shares her adenomyosis story as part of April for Adeno. Aroha hopes that what readers take away from this blog is that, like adenomyosis, you needn’t be silent about the pain and symptoms impacting your life.
At the age of thirteen, I discovered that there was something not quite right going on when it came to my menstrual health. For anyone who is a regular reader of the QENDO blogs, you may be familiar with my earlier piece: Long Road to Diagnosis: Aroha's Story. In this blog, I talked about the difficulties across my 13-year diagnostic journey. In this blog post, I disclosed that I have suspected Adenomyosis, PCOS and a chronic pain condition called Pudendal Neuralgia. Since then I have undergone a litany of scans and another laparoscopy where my specialist diagnosed me with Endometriosis.
So what does this all specifically have to do with Adenomyosis and its not so sneaky behaviour? Well, when I sat in my specialist’s rooms discussing my original ultrasound, all she could really tell me was that it appeared the wall of my uterus was enlarged which led her to believe that I may have Adenomyosis. However, she told me that the only way to be 100% sure of the diagnosis was through a hysterectomy. Since then I have worked with several other specialists to clarify the diagnosis and still I stand with very little else to go by.
This is quite common, as adenomyosis is known to be quite difficult to diagnose.
“The main test recommended is a transvaginal ultrasound (the ultrasound probe is placed in the vagina). The test should preferably be performed by a gynaecologist who specialises in ultrasound, as general ultrasonagraphers may be inexperienced in the diagnosis of Adenomyosis. MRI (magnetic resonance imaging) can be useful in diagnosing Adenomyosis because it collects pictures of soft tissue such as organs and muscles that don't show up on X-ray examinations. Adenomyosis is often only diagnosed by pathology tests conducted after the uterus has been removed (hysterectomy).”
(https://www.jeanhailes.org.au/health-a-z/vulva-vagina-ovaries-uterus/adenomyosis#diagnosis)
To find out more about the diagnosis of adenomyosis, which can be characteristically diagnosed from a combination of laparoscopy findings, specialist MRI and/or transvaginal ultrasound, and definitively from histology after hysterectomy; see QENDO’s expert resources on these topics: Introducing Adenomyosis, MRI and the Diagnosis of Adenomyosis, Adenomyosis Q&A.
Despite the lack of a definitive diagnosis, I continue to face extreme pain, bloating, pain with sex (dyspareunia,) and abnormal bleeding (even with the Mirena.) On top of this, ongoing internal examinations have continued to show an enlarged and tender uterus and pelvic floor hyperactivity and pain. Alongside these gems, I often find myself succumbing to extreme bouts of dizziness, nausea, migraines and fatigue that just seem to swipe me out of left field. So, while many label Adenomyosis a silent disease due to its diagnostic struggles, I am here to tell you, it is far from such. Adenomyosis screams, it is loud, obnoxious and debilitating. It is painful, exhausting and frustrating. However, there is help out there, and knowledge is becoming more widespread.
While I continue to juggle the management of my conditions, I am finding the teams of women who understand my plight are coming out of the shadows in droves. Conversations around juggling anti-depressants, regular pain medications, Exercise Physiology, Pelvic Floor Physiotherapy, massage, heat, TENS machines, pelvic floor wands, yoga, nerve pain anti-depressants and nerve blockers are more common. Recommendations for knowledgeable Naturopaths and Psychologists are easier to come by, and while the cost to my mental health and my pocket seems to be ever growing, for once, I am realising, I am not alone in this fight! Therefore, this Adenomyosis Awareness Month, if you remember anything from this blog, remember this, that just like Adenomyosis, you no longer have to be silent!
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