Day 8: A quick guide to adenomyosis - a sister to endometriosis, or a distant cousin?

Today, I want to talk about the second chronic illness that I was diagnosed with following my MRI - Adenomyosis. Another weird and scary term?


Adenomyosis is a chronic condition in which the endometrium (uterine lining) is found in the muscular wall of the uterus. It often co-exists with endometriosis, thereby giving it the nickname of being 'endo's ugly twin sister'. Some also refer to adenomyosis as 'endometriosis inside the uterine muscle'. While in most cases it is difficult to diagnose this condition with ultrasounds and MRIs, it is not an impossible task for an expert eye. The symptoms of adenomyosis almost always overlap with those of endometriosis - heavy abnormal bleeding, painful periods, spotting, pelvic pain, and infertility. The one known treatment option out there for adenomyosis is hysterectomy - the removal of the uterus. But this clearly isn't a suitable option for most women, especially ones that choose to be conservative with the intent of maintaining fertility and keeping the uterus. In such cases, anti-inflammatory drugs and the combined oral contraceptive pills are commonly prescribed to try and manage this condition, although there are limited studies to demonstrate its effectiveness for adenomyosis. In spite of this being a serious illness that is thought to affect 1 in 10 women worldwide, there is very little information about this condition available to patients and the general public which is all the more reason to spread awareness. April is the month dedicated specifically to Adenomyosis Awareness.

I don't have much to share specifically in terms of the effect of adenomyosis in my life because all those times that I squeezed my abdomen tight and cried out in pain, it is more likely than not that these two sisters were working together to pull a prank on me. Looking back, I remember the countless times I told my grandma that this pain felt like someone was repeatedly stabbing me in my uterus with a sharp knife, and how I wish I could take my uterus out of my body and leave it there till it was ok to put it back in. Little did I know that someday a doctor would look me in the eye and tell me that taking the uterus out of my body (without the option of ever putting it back in) was precisely the only way I could deal with adenomyosis. 

When it started out with a diagnosis back in 2019, I remember my gynecologist telling me that I had to focus more on my PCOS and endometriosis because my adenomyosis as visible in the MRI images was very minimal. I was relieved to hear that back then because it was one less thing to worry about. When 2020 started and COVID happened, in-person visitation rights were removed causing great pain to a lot of patients like me who survive on regular consultations and health check-ups. Every time I was in pain, all I could do was reach out to my doctors via the health portal, or resort to telehealth. And chronic uterine conditions are not something they can help you with by looking at your face over a video call. It was a difficult time to survive in, even without the pressure of isolation at home due to COVID. When later that year patients were allowed to go in, I was still hesitant because I was worried about catching the virus. However, beginning in October of 2020 I started experiencing cramps, heavy periods, and spotting like never before. Unable to leave my bed for a week while I was on my periods, the heating pad and painkillers became my best buddies. There were days when I toasted the skin on my stomach from prolonged exposure to the electric heating pad at its highest setting. And that's when I decided that it was more than I could handle. I scheduled a visit with my gynecologist after almost a year and went in for an ultrasound during which she said that my adenomyosis was worsening and that we needed to control its spread. I have learned by now that managing a chronic uterine condition only means 1 of 2 things - more medications or surgery. Luckily for me, this time we are going with the former. And if things don't get better I will someday have to go for the latter. But for now, I will focus on the present and stay positive as I wait for life to work its miracle because like someone recently told me:

Where there is hope, there is faith.
Where there is faith, miracles happen.


#EndoTheStigma


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