April is Adenomyosis Awareness Month.  Ado-what-o?  A disease, similar to Endo; some say Ado is the cousin to Endometriosis.  And many people with Endo also suffer with Adenomyosis.  So, I figured I’d spread a bit of awareness of Ado during this month and learn something in the process.

A few folks who attended our Endo walk suffer also from Adeno.  And one who showed up to our last Endo support group meeting suffers from Ado (but not Endo).  It’s a term I’m beginning to hear a lot more about.  But, what is it?

What is Adenomyosis?

So if you’ve been reading these blogs, you probably know all about Endometriosis.  Adenomyosis is often described as Endometriosis inside the walls of the uterus : similar implants and lesions as Endo form within the uterine walls and muscle tissue. They cramp, they slough, they spread…just like Endo.

Adenomyosis can sometimes be misdiagnosed as fibroids.  Some implants can grow into tumor-like masses, showing up on imaging scans, which may be misread as fibroids.  These masses are called adenomyoma.

Like Endometriosis, there is no known cause of Adenomyosis. The two theories I’ve run into are 1) endometrial cells migrate into the walls of the uterus and 2) endometrial cells simply develop within the walls of the uterus.  There is also a theory that women who have had c-sections, tubal ligations, or abortions may develop Adenomyosis based on transference of tissue and cells during the procedures.  Many also believe, as with Endometriosis, that there is a strong connection between Ado and estrogen.

Signs & Symptoms

Much like Endo, Ado can cause severe menstrual pain and cramping, heavy bleeding, spotting, lengthy periods, an enlarged or hardened uterus, painful sex, and possibly infertility.  And, some lucky people are asymptomatic: they have no symptoms.

Diagnosis

Most patients receive their Adenomyosis diagnosis after they’ve already received a hysterectomy and the pathologist biopsies the uterine tissue.

However, if you still have your uterus and wonder if you suffer from Ado, MRIs may be able to help diagnosis it.  Again, the tumorous growths within the uterine walls may be mistaken for fibroids.  And that’s assuming Ado has developed into masses and not just the tiny lesions and implants that may not be visible in an imaging study.  Ultrasounds may also be useful in helping diagnose suspected Ado.

A hysteroscopy (a little camera tube pushed up into your uterus) or needle biopsies (little punches of tissue samples) may also help in the diagnosis of Ado; however, it may be inaccurate and provide a false negative since they may not be taking a tissue sample of the deeper uterine wall which is affected by Ado.

Treatment

Supposedly, having a hysterectomy can cure Adenomyosis…simply because the uterus is removed and Ado inhabits the walls of the uterus.  Take out the uterus; take out the Ado.  However, there are studies that indicate it may not cure all of the painful symptoms.

Don’t want to remove your entire uterus?  Talk to you doctor about a uterine resection to remove sections of outer uterine wall that are heavily affected by Ado.  This may not help all cases of Ado, especially if the implants are numerous or are closer to the interior of the uterus.

Our favorite (I say with extreme sarcasm), GnRH agonists (aka Lupron Depot), may help ease the symptoms of Adenomyosis, but it’s no cure.  Also, progesterone contraceptives (whether an implant or the pill) may help suppress the symptoms.

Ablation has been thrown around as treatment for Ado; however, that’s for superficial implants.  Since Ado may grow deeper within the walls of the uterus, ablation may not be able to scorch away hidden lesions and symptoms may persist.

A video created by Dr. S. Selva of Selva’s Fertility, Obstetrics & Gynaecology Clinic explains all of this a lot better than I can:

Support

And I thought finding a support group in my area was hard for Endometriosis…there’s even fewer groups or organizations out there for Adenomyosis! The Adenomyosis Advice Association has a great online support center.

If you suffer from Adenomyosis, please feel free to add a comment below.  I don’t suffer from it, but would love to learn about your experiences, how you were diagnosed, and what has (or hasn’t) helped with your symptoms…especially now because I have several women in my life who do suffer from Ado.

**Updated March 25, 2019**

Resources:

Adenomyosis Advice Association

Global Library of Women’s Medicine

Institute for Female Alternative Medicine

Jean Hailes

John Hopkins Medicine

La Radiologia Medica – MRI, US, or Real-Time Virtual Sonography in the Evaluation of Adenomyosis?

Medscape – Adenomyosis Imaging

The American Congress of Obstetricians and Gynecologists

The Center for Innovative Gyn Care

Women’s Health – Adenomyosis – An Internal Uterine Endometriosis

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa