The Search for an Adenomyosis Expert

 

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A few months ago, I wrote about how important patient self-advocacy is and how the knowledge I've gained has increased the quality of care that I've received. If you are looking for an adenomyosis expert, I hope you can use this article to strengthen your care team!

Finding an Adenomyosis Expert in Gynecology

My gynecologist initially thought I had endometriosis. After doing both a trans-vaginal and a trans-abdominal ultrasound, the diagnosis switched to "clinical adenomyosis".

When I first researched adenomyosis (in 2021) most websites stated that a hysterectomy was the only official “cure”. I broke down when reading this because I’ve always dreamed of having kids.

My husband and loved ones comforted me, telling me not to give up. They also encouraged me to keep researching until I found other possible treatments.

It was then that I knew I needed to find someone fluent in adenomyosis care.

I googled “adenomyosis experts near me” and made second-opinion consultations with several of them. They were interesting.

One doctor thought that my symptoms were all in my head. She said that I didn't have adenomyosis, and that I just needed talk therapy. My therapist (at the time) was so confused when I told her this.

A different doctor, who is retired now, explained adenomyosis in a non-frightening way. He was amazing.

 

Finding an Adenomyosis Expert in Gynecologic Surgery

When I was clinically diagnosed with adenomyosis (an official diagnosis comes from a hysterectomy), I was referred to a gynecologic surgeon for a consultation.

Referral Appointment

The nurse that brought me into my room looked at her clipboard and wanted to confirm that I was there for a "hysterectomy consultation".

Shocked, I fumbled to say that I was just there to talk about my clinical diagnosis. She said it was probably just an error that happened during booking when they saw “adenomyosis”.

When the surgeon came in to talk with me, she said that I could start on a birth control method. She explained that pausing my cycle would stop the shedding of my lining that was going into my uterine wall (adenomyosis). This would also help any endometriosis that was "likely" there.

If that didn’t work, we could talk about ablation.

 

More Research

I looked through the list of doctors on Endofound’s website, and bookmarked the ones that have published or publicly spoke about adenomyosis. I also looked into their practices to see how much they cared about protecting fertility and vital reproductive organs.

Another thing I considered was their surgical methods. I read a lot about the pros and cons of robot-assisted surgeries. I also researched the difference between ablation and excision surgeries because multiple sources said that endometriosis and adenomyosis are typically co-morbid.

The list of specialists was small once I knew I wanted excision surgery (if I had endometriosis). I also wanted a doctor that took my insurance. My primary care doctor recommended a well-known surgeon here in Georgia, but I was terrified of the costs involved.

I wound up going to Boston, MA to get a minimally invasive laparoscopic endometriosis resection surgery and a Mirena IUD inserted.

 

Finding Other Adenomyosis Experts

I saw many other specialists to help with my widespread pain (fibromyalgia) and my chronic pelvic pain. In addition to the following specialists, I had appointments with neurologists, rheumatologists, multiple orthopedic doctors and more.

I even worked with a registered dietician, but she focused more on helping me gain weight (I was severely underweight then). If you want to know why, read my article about forgetting to eat with ADHD!

 

Physiatry

I worked with a Pelvic Pain Specialist, and it was life-changing. Her office was not covered by insurance, so I only had a few in-person meetings with her.

She coordinated my care holistically by

• referring me to (and working with) a Pelvic Floor Physical Therapist that was covered under my insurance
• making sure I was coping with everything by checking in on how I was doing in talk therapy
• working with my Psychiatrist to make sure the medications I was on were safely working with one another
• helping me understand how my body responds to stress and pain
• and more!

She was so thorough and attentive. Like a primary care doctor for pelvic pain!

 

Physical Therapy

When I started Pelvic Floor Physical therapy, I was in a wheelchair with pain radiating throughout my entire body. When I was discharged, I walked out of the building with a skip in my step.

I still have pelvic pain, but I now have ways to make it more manageable.

 

Psychology/Talk Therapy

Talk therapy is invaluable for chronic pain. It’s crucial to learn how to cope when you can no longer do the things you used to. Use my article to help find a therapist with experience in treating people with chronic pain, and/or check out our freebie for a self-paced checklist to aide your research!

My therapist was trained in therapy with a Christian integration. This means that she’s not just a Christian therapist, she knows how to use therapeutic techniques alongside the Bible to help her clients heal and strengthen their faith in the process.

I highly recommend Christian integration therapy for anyone who wants this experience!

 

Conclusion

I don't know if there is one solo adenomyosis expert to have in your care team. There is so much that we don’t know about adenomyosis and how to treat it. What I do know is that it takes a great support system at home, and a team of various specialists to help with the variety of issues that come with the disease.

In my opinion, it also takes a lot of faith.

In the beginning, it was so difficult to believe that there is a reason for this pain. Over time, I’ve learned so much more about myself, about God, and about other people.

I don’t love being in non-stop pain.

I do love

• the amount of empathy I have now,
• how reliant I am on God’s strength to get through the day,
• that I'm learning to receive help from others,
• the close bond my husband and I have,
• all the other ways I’ve grown!

How to Choose a Therapist Checklist!

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