Living with Adenomyosis: The Other Battle I Fight

Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow'. — Mary Anne Radmacher

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April is Adenomyosis Awareness Month — a time to shed light on a condition that affects millions of people with uteruses but (also) often goes undiagnosed or misunderstood. While I often speak about my journey with endometriosis; raising awareness, building community, and sharing my journey in hopes that it might help someone else feel less alone, April gives me the opportunity to focus on another part of my reality: living with adenomyosis. What many may not realise is that endometriosis is not the only thing I’m fighting. I live with the trifecta: endometriosis, adenomyosis, and PCOS. Just for good measure, let’s throw fibroids in there too — I’ve had those removed by my doctor as well.

My diagnosis of adenomyosis came in June 2023. It was picked up through imaging, but it was only in August of that year, during excision surgery, that the diagnosis was confirmed. Since then, it’s been a different kind of battle — quieter perhaps, but no less intense.

What Is Adenomyosis?

Adenomyosis is a condition where the inner lining of the uterus (called the endometrium) breaks through the muscle wall of the uterus (called the myometrium).¹ This can cause the uterus to become enlarged, tender, and painful — especially during menstruation.

To put it simply: it’s like endometriosis, but inside the muscle of the uterus. While endometriosis causes endometrial-like tissue to grow outside the uterus, adenomyosis keeps things “in-house,” but still causes just as much havoc.

Adenomyosis vs. Endometriosis: What’s the Difference?

It’s easy to confuse the two conditions — and many people (myself included) actually have both.

Here’s a quick breakdown:

Feature	Adenomyosis	Endometriosis
Location	Inside the muscle wall of the uterus	Outside the uterus (e.g. ovaries, bladder, bowel, kidneys, lungs)
Common Symptoms	Heavy periods, severe cramping, enlarged uterus	Painful periods, chronic pelvic pain, infertility
Diagnosis	Imaging (MRI or ultrasound), confirmed via surgery	Laparoscopy (surgical diagnosis)
Treatment	Hormonal treatments, hysterectomy	Hormonal treatments, excision surgery

In my case, I was already navigating life with endo and PCOS, and the adenomyosis diagnosis helped explain the heavy, painful periods and strange sensations in my uterus that felt different from my usual endo pain. It’s a layered, frustrating experience, but having answers helped make sense of my symptoms.

Fast Facts About Adenomyosis

Here are a few important things to know about this condition:

• Adenomyosis affects around 20–35% of women, but many cases go undiagnosed.

• It’s more common in women over 35, especially those who’ve had children — but young women and teenagers can also be affected.

• Symptoms include:

  • Heavy, prolonged periods

  • Severe cramping

  • Chronic pelvic pain

  • Painful sex

  • A feeling of pressure or fullness in the lower abdomen

Some women have no symptoms at all, which makes diagnosis even trickier.

How Is It Diagnosed?

Diagnosis isn’t always straightforward. For many years, the only way to officially diagnose adenomyosis was through a hysterectomy and tissue analysis (yep — you had to lose your uterus just to get confirmation).

Today, transvaginal ultrasound (which can be quite painful with endo and adeno) and MRI scans are common non-invasive tools used to spot signs of adenomyosis. In my case, imaging picked it up, and my excision surgeon confirmed it during laparoscopy. For those living in areas with limited access to knowledgeable specialists, getting a diagnosis can be a long, frustrating road — much like endometriosis.

How Is It Treated?

There’s no cure for adenomyosis, but there are treatment options to manage symptoms. There is no one-size-fits-all treatment for adenomyosis, and options depend on the severity of symptoms and whether someone wants to preserve fertility. Options include:

• Medication and Hormonal therapies: Pain relievers like NSAIDs, hormonal birth control, or GnRH analogs to manage bleeding and pain.

• Intrauterine devices (IUDs): Hormonal IUDs like Mirena can sometimes reduce heavy bleeding and cramping.

• Excision surgery: Can help in removing associated endometriosis or fibroids but may not eliminate adenomyosis if diffuse. Diffuse adenomyosis, where the endometrial tissue invades the uterine wall extensively, is difficult to excise completely without removing a significant portion of the healthy uterine muscle.

• Uterine artery embolization (UAE): A less common method used to reduce blood flow to affected areas.

• Hysterectomy: The only definitive treatment, which is not an option everyone wants or can access. Often considered a last resort, especially for those with severe, unmanageable symptoms who are no longer seeking to preserve fertility.

In my case, I’m exploring non-surgical options and working with my doctor to balance treatment for adenomyosis along with my ongoing endometriosis and PCOS management. It’s a delicate dance — some treatments help one condition while aggravating another.

When Celebrities Speak Up: Gabrielle Union and Lena Dunham on Adenomyosis

The journey to an adenomyosis diagnosis can be long and isolating, but when public figures share their stories, it brings much-needed visibility to this often-overlooked condition.

Gabrielle Union, acclaimed actress and author, has been candid about her struggles with infertility. In 2018, she revealed that after years of painful periods and multiple miscarriages, she was diagnosed with adenomyosis. Union shared that her symptoms were often dismissed by doctors, attributing her fertility issues to career choices and age rather than investigating underlying health conditions. She emphasised the importance of self-advocacy, stating, "Towards the end of my fertility journey, I finally got some answers... The reality is I actually have adenomyosis."

Lena Dunham, writer and actress, has also opened up about her battle with chronic pelvic pain. In a personal essay published in Vogue in 2018, Dunham detailed her decision to undergo a total hysterectomy at the age of 31 after years of unsuccessful treatments for endometriosis. While her primary diagnosis was endometriosis, her experience underscores the complexities of diagnosing and treating uterine conditions like adenomyosis, which often coexist and are frequently misdiagnosed.

Their willingness to share their experiences sheds light on the challenges many face in getting a proper diagnosis and treatment. It also reinforces the importance of listening to one's body and advocating for comprehensive medical evaluations when symptoms persist.

Living with Adenomyosis

Living with adenomyosis means having to be incredibly in tune with my body. I’ve had to make adjustments to my diet, track my symptoms religiously, and advocate harder than ever for proper care. It also means making peace with uncertainty — some days are manageable, others feel impossible.

But awareness is power. And as we mark Adenomyosis Awareness Month, I want to say this:

If you’re reading this and seeing yourself in these symptoms — don’t brush it off. Push for answers. Advocate for yourself. You are not crazy. You are not being dramatic. And you most certainly are not alone.

Adenomyosis is still under-researched, under-diagnosed, and misunderstood. So many people are living with this condition without even knowing it has a name. Just because it doesn’t get the same attention as other reproductive health conditions, that doesn’t mean it isn’t just as disruptive, painful, and real. We need more research. The more we talk about it, the more we empower people to recognise it, seek help, and access care.

If you’ve made it this far, thank you for reading. If you're battling this silent condition, please know you’re not alone. Let's keep the conversation going, keep pushing for awareness, compassion, and better care, even beyond Adenomyosis Awareness Month

Love and light,

Hlengz - The African Endo Warrior

💛💛

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¹Source: Cleveland Clinic