My Adenomyosis Diagnosis | Living Minnaly__1.JPG

UPDATE: Like many before me, I was misdiagnosed with Adenomyosis, and actually have Endometriosis.
They’re kind of like sister diseases though, and you can read my updates since this blog post here.

I’m no stranger to health problems. 10 years of being a competitive athlete with countless sprains, concussions, broken things, and stitches, followed by facing a decade-long struggle with an eating disorder, a hip surgery, and an autoimmune disease diagnosis of Hashimoto’s and hormonal imbalances is a colorful collection, I’d say.

I kind of thought that history above that I’ve become so adept at summarizing when asked about my health would be it—my health story all wrapped up in a bow, a bundle of “this is what I’ve been through, but look at me I’m fine now!" As of last week, I’ve got a new, unexpected chapter to add to the list and one more pending epilogue— I found out I have adenomyosis, and as the cherry on top? I’m scheduled for a biopsy on Thursday for a lump found in my breast.

Truth is, my first reaction was just, what the fuck.

Living with chronic illness, Part 1

When grappling with getting a handle on my Hashimoto’s symptoms a few years ago, I found great relief in sharing the things I was doing to help my health— but then that reached a point where I was becoming a little too immersed in living FOR my autoimmune disease, rather than living WITH it. My identity started to get a bit distorted. Identifying myself as someone with a chronic illness lived at the forefront of my mind when it came to making decisions on how to live my life; small decisions like whether I should have another cup of coffee, or more complicated decisions of how to lay out my schedule and work in a way to suit my needs. I started to almost revel in being an #autoimmunewarrior because it was something I needed to hold onto at the time in order to not just scream every day at how much work it was to make me feel just baseline okay.

Then obsessing with bettering my health started doing the opposite; chronic stress bred from everything in my life centering around caring for my Hashimoto’s and being scared to tip the scales in either direction. I felt like I could never really do anything that I wanted, fully, because everything came at a cost— it grew to be a form of orthorexia living in a Trojan horse of my Hashimoto’s. Realizing this, I made a concerted effort in stepping back. I scaled back on sharing so much about Hashimoto’s on my Instagram and I consciously started living my life more freely, unlearning many of the restrictions I truly did have to live under for so long to kickstart my healing, but that now needed to evolve with me. My health got to a better place than it really had ever been, because I was both mentally and physically more at peace and calibrated than I had been before. My now healthy relationship with food and body was a result of so many years of hard work.

So you can imagine the pride I felt in getting myself to this place— and the relief of finally feeling able to live in a more relaxed way than I had been able to for the past 5 years, not feeling like I lived a limited life. Then came this “what the fuck” moment.

The diagnosis + biopsy

Backstory: About 5 months ago, I started having periods that were painful to the point of debilitating. I felt confused, because nothing had really changed overall in my diet, lifestyle, or stress/sleep. And by insanely painful, I mean laying down sideways in the fetal position for 2 days because it hurts too much to lay on my back, along with the joys of extreme nausea and very clotty, heavy periods that I had to abandon my period cups for pads because it hurt too much to insert anything into my body. And I consider my pain tolerance to be fairly high, given that I went off pain meds for my hip surgery on day 2 when most people are on meds for at least a month. I went to a new GYN (who was horrendous, but we’ll save that full story for another day) that gave me a referral for a pelvic exam with a vaginal ultrasound for further examination— but then she also felt something in both my breasts that she wanted me to get an ultrasound for. This wasn’t the first time I’ve had a breast ultrasound for a lump (had one in 2016), so I wasn’t very alarmed because I had been told I just kind of have denser, lumpy breast tissue, like a lot of women under 30.

First up was the breast ultrasound, during which the radiologist didn’t feel the lump that GYN had found, but instead, he found a different pea-sized lump on my left breast that he said he wanted to have biopsied to make sure it’s just a benign fibroadenoma (a benign tumor of the breast, most commonly found in women under 30). Then my pelvic ultrasound came and went, and I had to wait for the results to be delivered to me via a phone call from the GYN. I didn’t think much of the pelvic ultrasound, as I was a wee bit preoccupied by the fact that a hollow needle was going to be stuck into my boob the following week in order to tell me good or bad news. The GYN called me to tell me that I had adenomyosis and that I need to go on the pill because that was my only option— I rolled my eyes during this call, because she had been the most adamant pill-pusher I had ever met, insisting that every woman should essentially be on hormonal birth control. Eager to hang up and get to my computer to read up on adenomyosis and actual research studies to see what my treatment options were, I told her I’d think about it.

Only when I started reading about the technical aspects of this new diagnosis of mine and PubMed journals on the current research on adenomyosis did I start to realize that this was going to be no small matter in my life. This feeling has pervaded my life for the past few days, because my options still feel a bit like being stuck between a rock and a hard place.

What is adenomyosis?

Have you heard of endometriosis? Adenomyosis is kind of like endometriosis’s little sister, that doesn’t get as much attention, although is rapidly becoming more often diagnosed these days. For menstruating people, your period is essentially the inner lining of your uterus (your endomentrium) shedding because a pregnancy did not take place. Your endometrial tissue is not supposed to exist outside of your uterus— therefore when it does, it causes dysfunction. Endometriosis is a condition in which your endometrial tissue pervades outside of the uterus into anywhere else in your pelvis, from your fallopian tubes to ovaries. Adenomyosis is a condition in which your endometrial tissue pervades outside of the inside of your uterus into the actual muscle wall of the uterus. So why are both these conditions so painful? Endometrial tissue is supposed to shed during your period— but when that tissue is outside your uterus, it is still essentially trying to shed but in an environment that is not conducive to that action. Severe menstrual cramps, abdominal pressure, bloating from an enlarged uterus, excessive and clotty bleeding, pain with intercourse, general pelvic pain, are all some of the wonderful joys you can experience with adenomyosis.

Initially, adenomyosis might just sound like a really painful period, but it’s a chronic condition that has effects that can very much impact your future— in this comprehensive medical study, it explains that the only “cure” for adenomyosis is a hysterectomy (surgically removing the uterus, therefore effectively sterilizing you aka making you infertile) and it significantly increases your rates of infertility and miscarriages. As someone who is still undecided on family planning, this is a tough pill to swallow because I’d really like the option to make that decision for myself; and instead, it now feels like that the pendulum is swinging in a direction for me. Then when it comes to the day-to-day effects, the pain and physical symptoms of adenomyosis can be quite disruptive when unattended to.

Next steps: what’s a girl to do?

As someone who has come to understand hormonal health in a very deep way over the past 5 years from dealing with an endocrine-centered autoimmune disease, I’ve experienced the implications of this that go beyond surface symptoms and what can come from not addressing hormonal health from a 360º perspective. It took me several days to digest what I feel are my best paths forward for adenomyosis treatment options— I’m very aware and open to the fact that things may and will likely change, but I wanted to share where I’m currently at because not a lot of people talk about going through these stages.

Option A:

I could just pop the pill or hormonal IUD and likely feel more immediate relief from my symptoms and go on with living my life— but the way I see it with my health history, this will likely set me up for further hormonal disruption down the road, gut health issues I’ve worked so hard at resolving, and also deal with the side effects I hated so much when I previously have been on hormonal birth control. I do want to clarify that I am very pro-Western medicine when necessary and I think that the pill is right for some people in certain situations. The IUD supposedly provides more comfort than the pill for people with endometriosis and adenomyosis, as the device is administering the hormones directly by your uterus, as opposed to hormones entering your bloodstream via the pill. This is something I’ve not ruled off the table, depending on how things go.

Option B:

Get a hysterectomy or try the minimally invasive surgical options to help reduce the endometrial tissue where it’s not supposed to be. I’m currently not considering either of these.

Option C:

Holistic interventions, mainly through diet, exercise, and lifestyle adaptations. This is the first option I naturally am inclined to give a go at first; however, given my history of an eating disorder and already having shifted so much of all these factors in my life for my Hashimoto’s, this option feels stressful. I’ve do so much day-to-day to manage my hormonal health holistically, and I’ve worked hard to get to a point where these things more often feel like my new normal rather than extreme sacrifices and strict regiments— but if we’re being objective here, it still is a lot. I don’t eat gluten, dairy, nuts, or anything that outright irritates my gut, I prioritize cooking mostly at home and whole foods that are specifically tailored to hormonal health, I take a lot of supplements daily in the morning and evening, I workout, and am mindful of my caffeine and alcohol intake, along with sleep health. To think about giving up the few things that I can indulge in like coffee, sugars, red wine or mezcal margaritas on date nights, when I already do what feels like a lot? Feels frustrating. And I know that my mental health and stress levels are also key to my physical well-being, so it has to be a balance of what I feel is manageable for right now, and I’ll readjust as I go.

So for now, my first plan of action to try is cutting back to 1 cup of caffeine per day, alcohol only when I truly want it (which is no different really than what I currently do), focus on eating more of specific foods based on the timing of my cycle, staying on top of sleep/exercise/stress, and doing regular acupuncture sessions right before and during my period to help reduce inflammation and support circulation.

Why share?

I’ve always been very vocal that medical issues are not something to be scared of talking about or taboo in discussing the uncomfortable details of— while I completely understand and respect that some people prefer to keep their medical and health information private, I am simply someone who doesn’t mind being open about it because I feel that sharing my experiences can help other women who might A) not be as well-versed in hormonal health and medical lingo in the way I am very lucky to be through my work and personal history, therefore that may feel overwhelmed by all this and B) I remember how alone I felt in my Hashimoto’s diagnosis because this was before anyone really heard of this disease, and there were no personal accounts or stories shared on the internet about it that I could relate to— so I’d like to be that person for someone else if I have the power to be.

I don’t have a pretty and inspiring way to really wrap up this blog post, other than to say I’m taking things one day at a time and I’ll be sharing how this all progresses. I would love to hear about your experiences with adenomyosis or anything similar if you’ve been through them. Thanks for coming to my little corner of the internet ❤️