Adenomyosis

ado

April is Adenomyosis Awareness Month.  Ado-what-o?  A disease, similar to Endo; some say Ado is the cousin to Endometriosis.  And many women 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 gals who attended our Endo walk suffer also from Ado.  And one gal 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 : the same implants and lesions as Endo form within the uterine walls and muscle tissue. They cramp, they bleed, 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 women are asymptomatic : they have no symptoms.

Diagnosis

Most women 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.  If you would care to see some imaging studies of Adenomyosis, please click here.

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, 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, which you can find by clicking here or by following them on Facebook.

Another great resource is Adenomyosis Fighters.  Interested? Click here.

There is also a Facebook private group called LIVstrong, which you can join by clicking here.

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 13, 2017**

Resources:

Adenomyosis Advice Association

Global Library of Women’s Medicine

Institute for Female Alternative Medicine

Jean Hailes

John Hopkins Medicine

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

MedscapeAdenomyosis 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

5 thoughts on “Adenomyosis

  1. Hi!
    I do have a diagnosis of adenomyosis, from the year 2005; I went in to the Dr. with abdominal pain of a near constant, having asked for repeat tests for STD’s, Pelvic INflammatory Disease, yeast infection….trying to find the cause. I had a Mirena IUD inserted, which had complications following my 3 year old daughter kicking me in the womb….and I was not functioning well from all of the pain. Pain while walking, sitting, driving, and during sex.

    After having the IUD taken out, had several imaging procedures (internal scans that suggested ovarian cysts) and an MRI imaging scan with dye. The MRI suggested but inconclusively of Adenomyosis.
    The Dr. sent me home with prescription Advil or whatnot….not really having a good suggestion for treatment.

    Herbs and supplements that balance and regulate hormones are supposed to be a good start. For me, I became pregnant shortly after diagnosis, so didn’t really take anything or treat it. Still not treating it, except with bathes and a biting, sarcastic, pissy attitude. Painful.

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  2. I was diagnosed with Adenomyosis a few years ago but I probably had it for at least 15 years before that. I kept going to the doctor because of my extremely heavy periods and extreme pain. I was constantly checked for fibroids and Endometriosis but those always came out negative so they would just tell me that nothing was wrong with me and basically to toughen it up. I also got really bad anemia from it. I finally started going to a naturopath and she was able to figure it out. She told me western doctors only check for Endometriosis and nothing else. She had me on birth control and progesterone and lots of different supplements. I’m off the birth control now and just doing the progesterone and something called “seed cycling”. It sounds a little crazy but it has really been working for me. My periods are so much more normal now. I do usually have maybe one morning of pretty heavy cramping but nothing compared to what I used to have. I used to have contractions that would come about 5 minutes apart. Sometimes to the point that I would throw up from the pain. I am so thankful for my naturopath. Thanks for having this website. It’s very informative!!

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