You’re Not Crazy, You’re in Pain: Living with Adenomyosis

Living with adenomyosis is real and painful. Learn how to find answers, get support, and feel seen in your journey. This post is written in partnership with AdventHealth for Women. All thoughts and opinions are my own.

For years, I chalked up my debilitating period pain, fatigue, and mood swings to “normal” womanhood. Every time I mentioned it to a doctor, I was told it was just PMS, or that I needed to drink more water, or that maybe I was just stressed. I started to believe that maybe I was being dramatic, maybe it was all in my head.

But here’s the truth: I wasn’t crazy. I was in pain. And I was living with adenomyosis, a chronic condition that I didn’t even know existed until years into my symptoms.

After having each child, my symptoms got worse and after having a kidney transplant they were the worst they had ever been. So I sought help again. This time at AdventHealth for Women. I finally found a doctor who would listen and take my symptoms seriously. My symptoms were very real, I just didn’t have a name for them. Seeking help at Advent helped me with that. There was a reason for the heavy, painful periods that wiped me out for days, crippling pelvic pain that didn’t go away even after my cycle ended, mood swings and fatigue, and the bloating.

But because I’ve always juggled a lot — from raising my kids to running my business and managing chronic stress — I pushed through it, thinking this was just part of being a woman and a mom. Getting answers and exploring treatment options changed everything.

What Is Adenomyosis?

Adenomyosis happens when the tissue that normally lines your uterus starts growing into the muscular wall of the uterus. That tissue still starts thickening, breaking down, and bleeding during your cycle but since it’s stuck inside your uterine muscles, it causes intense pressure, inflammation, and pain.

It’s often confused with endometriosis or fibroids, and to be honest, I had no idea what the difference was at first. I just knew something was wrong and it wasn’t just bad cramps. What I’ve learned is that some women experience both adenomyosis and endometriosis, making the pain even worse.

My personal experience living with adenomyosis

Unfortunately so many women go undiagnosed because, like me, they think the pain is normal or it’s dismissed by a doctor. Once I shared my story of being diagnosed, friends started to share their experiences with me. I wasn’t the only one that was dismissed and told my symptoms were normal.

The amazing thing about having a doctor at AdventHealth for Women is that I was never ignored. The very first time that I brought it up to an OB/GYN I was referred to the specialist that could help get me testing and answers. 

Getting diagnosed isn’t always easy and takes time to get testing done but it is so worth it. To get diagnosed, I had to get two different ultrasounds and an MRI. Getting the tests was easy but the scheduling part is what takes the longest. If you can work around your schedule to get the tests done, then getting answers is easier than you think. 

Every woman’s journey is different, but here are a few things that have helped me manage life with adenomyosis.

1. Medication to manage pain and regulate my cycle

There are a couple of different medication options to manage pain. Birth control was one that was offered to me to not only help regulate my cycle but manage my symptoms. If my pain tends to get really bad, I take extra strength Tylenol for the pain. Since I have kidney issues, medications like Advil aren’t an option for me but many women take it to manage their pain.

2. Mindfulness, rest, and pacing myself when symptoms flare

One of the biggest lessons I’ve learned living with adenomyosis is this: rest is not a luxury, it’s a necessity. The pelvic pain, back pain, cramping and bloating can take a huge toll on me. Sometimes I even experience nausea. Stepping back and listening to my body is crucial. 

I used to power through everything. I’d ignore the signs my body was sending me. I’d push past the pain to meet deadlines, pack lunches, attend events, and show up for everyone else. But I quickly learned that trying to do it all, especially when my body was screaming for relief, only made things worse. 

When I started prioritizing rest, everything shifted. Rest isn’t just about taking a nap (though naps are gold when you’re in the thick of a flare). It’s about giving yourself permission to pause without guilt. It’s letting your body recover from the inflammation, the hormone swings, the emotional exhaustion that adenomyosis brings. My biggest advice is to listen to your body and take breaks when you can. Resting is super important. Try building in buffer time in my day so you’re not rushing from one task to the next. You’re not lazy for needing to rest. You are not falling behind. You are healing. And healing takes time, grace, and softness — especially when you’re living with a condition like adenomyosis.

3. Advocating for myself and asking questions at every appointment

One of the hardest — and most important — lessons I’ve learned on this journey with adenomyosis is how to advocate for myself at appointments. I used to walk into appointments unprepared. I’d try to make my concerns quick or more polite, hoping the doctor would take me seriously without making a fuss. But after years of being misdiagnosed, dismissed, and left without real answers, I realized something: no one knows your body better than you do and your voice is your most powerful tool. Luckily my doctor at AdventHealth for Women is amazing and takes the time to listen to my concerns so advocating for myself is easy now.

Advocating for yourself doesn’t mean being aggressive. It means being informed, asking questions, and not backing down when something feels off. It means owning your story, and insisting that your pain be acknowledged and addressed with care.

Now, every time I walk into a doctor’s office, I go in prepared. Here are a few questions you can ask the next time you go to an appointment:

• What do you think might be contributing to my heavy, painful periods?
• Can we explore adenomyosis or endometriosis as a possible cause of my pain?
• What treatment options are available if I’m diagnosed with adenomyosis?
• How do hormonal treatments affect fertility or long-term health? (this one is especially important if you are wanting to have kids in the future)
• When should I consider surgical options like ablation or hysterectomy?
• Are there any lifestyle adjustments that could complement medical treatments?
• Have you treated other patients with adenomyosis before?
• Can I get a second opinion or referral to a specialist if needed?

4. Building a support system with other women who understand

One of the most powerful things I did after being diagnosed with adenomyosis was start building a real support team — one that included more than just doctors. Let’s be honest: managing a chronic condition while raising kids, running a business, and trying to keep life afloat takes more than prescriptions and doctor visits. It takes community, consistency, and care — the kind that wraps around your whole life.

For a long time, I tried to handle everything myself. I didn’t want to burden anyone. But the truth is, there is so much strength in knowing when to lean on others. Asking for help is okay.

Here are 3 things that helped me build a support team that’s made all the difference:

1. Find a provider who truly listens

Your doctor is the foundation of your medical care, and you deserve one who takes you seriously. Look for a provider who:

• Doesn’t rush you during appointments
• Encourages questions and explains things clearly
• Is experienced with adenomyosis, endometriosis, or pelvic pain
• Works collaboratively with you to find solutions that fit your life

Don’t be afraid to switch providers if something doesn’t feel right. I’ve done it and it was the best thing I could’ve done for my health. If you’re struggling to find a provider, the AdventHealth for Women Health Navigator can be a huge help.

2. Lean on trusted friends and family but be clear about what you need

When I opened up about my diagnosis, I was surprised by how many people wanted to show up. Sometimes they just didn’t always know how. Be specific with what you need and tell your loved ones how they can support you.

3. Include a mental health professions

Living with chronic pain affects your body, but it can wear down your spirit, too. Having a therapist who understands chronic illness has been a game-changer for me. Therapy can help you with so many things from processing the grief and frustration of a diagnosis or managing anxiety around your symptoms.

If you’re experiencing symptoms that sound like mine, don’t wait. Talk to a provider who will listen. AdventHealth for Women is here to help you find the answers and care you need. Take the first step by scheduling an appointment with a provider who specializes in women’s health. You are worthy of a life without chronic pain. And healing starts with being heard.