April is spring, but April is also awareness for an odd-sounding health condition.

Adenomyosis is a disease similar to Endometriosis (check out my recent post on Endometriosis from last month: March is Endometriosis Month – What It Is, and Why It Matters.) Instead of growing outside the womb like Endometriosis, endometrial tissue grows inside of the wall of the womb – at least that is my layman’s understanding.

I don’t quite feel like writing another long medical-based post because that isn’t my forte. However, I wanted to write this post in hopes it helps bring a sliver more awareness.

Whether you’re like me, and are still experiencing terrible pain after having your Endometriosis treated via excision (excision is the “Gold Standard” treatment for Endo… check it out if you haven’t heard of it), or if you’re undiagnosed and looking into possible explanations for your pelvic/abdominal pain.

**I am not a doctor, so please don’t rely on this information completely – I’ve Googled as best as I can, plus added my own experience, so things may not be perfect!

All I can really say about this particular disease is that it is incredibly painful and debilitating. From what I’ve heard, it’s pretty common to go along with Endometriosis. It is not easy to diagnose, and the only true cure is hysterectomy. Symptoms can be managed with certain hormonal treatments, but I can’t tolerate them well, so I don’t have a lot of options.

In comparison with Endometriosis, both conditions are hard to diagnose, both usually include surgery at some point or another, and both just suck.

If you read my Endometriosis post, I believe I mentioned that my doctor was pretty certain of me having Adenomyosis…. The only sure-fire way to tell is by performing a hysterectomy and biopsying said uterus, and then in that case, you would have “had” Adenomyosis. Sometimes a detailed scan can confirm it, though – after an ultrasound, I was told I most likely had this and/or Endo – and then during my surgery, apparently there were signs of the dreaded Adenomyosis. *Cue serious music.* No, really. It’s awful.

My pain is constant, dull, achey, stabbing, burning, and most and worst of all – heavy. I feel extremely bloated. The pain goes down into my legs and affects my back, as well. There’s this terrible heaviness that I have to deal with most of the time these days; there’s only a few days a month (a week if I’m lucky) where I feel “okay”. Which isn’t okay.

I had that bloated feeling before my official Endo diagnosis… before even being diagnosed with Endo, I really believed that Endo was causing all my pain so I just chalked it up to that. I thought I would feel better now, six months post-surgery. NOPE. (Okay, in some ways I do feel much better. As a whole, I don’t.)

Speaking of hysterectomy, I have an appointment with a new doctor coming up next week to bring up this topic: partial hysterectomy. I’m so scared of saying that word at the appointment – hysterectomy – even though that is why I scheduled the appointment.

But it’s so final. I worry about having one (not because my husband and I would like to have children, but because of long term health effects and of course, surgery itself), but at the same time, I’m so worried about being denied one. What if things don’t improve? What if I’m pushed into trying treatments that worsen my health, especially my mental health?

I don’t have high hopes about the outcome of next week and I absolutely dread having to undergo any more tests and surgery. 😦 Pain is draining in every way, and being prodded over and over to try and get rid of that pain isn’t any fun.

I don’t want surgery, but I can’t live in pain every day…

“Healing severe or chronic pain, I believe, includes transforming our relationship to the pain, and, ultimately, it is about transforming our relationship to who we are and to life.”
Sarah Anne Shockley, The Pain Companion: Practical Tools for Living

TMTF (tired mind typing fingers)

Photo from Pixabay.com, by dimitriwittmann.


Author: tiredmindtypingfingers

Writing about writing and chronic illness, and trying to make something out of it.


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