03/12/2025
It’s hard to explain to anyone who hasn’t lived it…
the way it creeps into every part of your life and slowly takes pieces of you.
For me, it felt like I was being stabbed from the inside every single day
Periods that were so heavy and painful they left me anemic, weak, and barely able to function
Exhaustion that wasn’t just tiredness — it was so deep,the kind that steals your joy and your spark.
I stopped going to the gym.
I stopped socialising.
I stopped feeling like me
Adenomyosis didn’t just hurt — it took my life away bit by bit
In the end, I made the hardest, most emotional decision of my life:
I chose to have a full hysterectomy
And even though that choice came with its own grief, fear, and healing…
it also gave me something adenomyosis had taken —my life back
I no longer have adenomyosis.
But I’ll never forget what it felt like, or the strength it took to get here.
If you’re living this nightmare right now, please know you’re not alone.
Your pain is real.
Your story matters. 💛
Adenomyosis. 🌸🩸🩺
GENTLE REMINDER: I’m a husband learning behind my wife, who lives with stage IV endo and fibro. This is not medical advice but my own research and a wish to understand. Please share your real-life experiences so I can write more accurately for the next woman. Your lived truth matters more than anything. Tell me what I get right or wrong so I can keep learning and spread better awareness. THANK YOU.
My wife doesn’t have adenomyosis, but so many of you have asked me to write about it. I’m sharing what I’ve learned as a husband who loves a woman with chronic gynecologic pain, so you feel seen, not dismissed. 🫶
What adenomyosis is (in clear words)?
Adenomyosis is when the tissue that normally lines the uterus grows into the muscle wall of the uterus. That muscle can become thick, irritable, and tender, so periods can be heavy, crampy, and exhausting. It’s not “just bad periods.” It’s a real disease with a real biology.
Why symptoms feel so overwhelming?
• Heavy bleeding & iron loss. Month after month, blood loss can drain your energy and mood. Iron deficiency alone can make getting out of bed feel like wading through wet sand. Please ask for a blood count and iron checks if you’re wiped out.
• Deep, dragging cramps. When the uterine muscle is inflamed and thickened, contractions hurt more. That’s biology, not weakness.
• It can start younger than people think. Better imaging now finds adenomyosis even in teens and young adults, so you’re not “too young” to be believed.
How doctors can see it (so you’re not gaslit)?
• Transvaginal ultrasound (TVUS) done by someone familiar with MUSA criteria can spot classic signs such as myometrial cysts, “fan-shaped” shadowing, asymmetric thickening, and changes near the junctional zone.
• MRI can help confirm the picture, often showing a thickened junctional zone.
Endometriosis & adenomyosis can travel together.
Many women with endometriosis also have adenomyosis, one reason pain can feel pelvic-wide and stubborn. Knowing they can coexist helps you push for thorough imaging and a joined-up plan.
Fertility...
Some studies link adenomyosis with higher miscarriage risk and lower success in certain IVF settings. This is not everyone’s story but it’s important to have a fertility-aware plan early, with a team that understands adenomyosis.
What helps (not one-size-fits-all)?
• Managing anemia matters just as much as pain control.
• Hysterectomy can be effective for women who are done with childbearing, but it isn’t first-line and it’s not the only path.
• Adenomyomectomy (surgical removal of focal disease) or uterine artery embolization (UAE) which may reduce symptoms and preserve the uterus.
A gentle plan you can take to your next appointment:
• Bring a 2–3 month symptom diary (bleeding pattern, pain score, fatigue, meds used).
• Ask for TVUS using MUSA, anc ask about MRI.
• Request blood tests for anemia/iron if you’re exhausted.
• Discuss goals first (pain, bleeding, fertility), then choose treatments that match those goals.
• If you’re not being heard, it’s ALWAYS okay to seek a second opinion.
I hope I've got it right. Please share your real-life experience as my wife doesn’t have adenomyosis. Thank you.
Lucjan 🎗