I get this question at least 3 times everyday. Whether it be from people in my everyday life (coworkers, family, friends..), my blog followers, or those in the grocery store trying to make a conversation. I am NOT gluten-free because of celiac disease, a gluten intolerance, or IBS. I am gluten-free because of a medical condition I was diagnosed with last year, Adenomyosis. If you do not know what in the world Adenomyosis is, you are not alone. I had no idea what this term meant, and as I’ve discovered, a lot of doctors don’t know either.
Adenomyosis (pronounced ad-uh-no-my-O-sis) can easily be broken down to Adeno-(gland), myo-(muscle), and -osis (condition). Adenomyosis is defined as the presence of endometrial glands that appear within the tissues in the muscle of the uterus (adenomyosis.org). The displaced endometrial tissue continues to act as it normally would — thickening, breaking down and bleeding — during each menstrual cycle. An enlarged uterus and painful, heavy periods can result (mayoclinic.org). It is often misdiagnosed as fibroids but can appear with other conditions such as ovarian cysts, prolapse and even gynecological cancers that can cause pelvic pain.
Adenomyosis is a chronic condition with no known cure beyond a hysterectomy.
Like all conditions, symptoms vary between patients. Some women feel no pain, while others have most of the well-known symptoms. Adenomyosis can present itself in the following ways:
- Heavy, prolonged menstrual bleeding (bleeding that can last up to 14 days plus)*
- Severe menstrual cramps (as if you are in labor or constipated)*
- Large blood clots*
- Sudden stabbing pains across abdomen at any time*
- Sudden and unexpected vaginal discharge
- Severe abdominal pressure and bloating*
- Severe nausea, acid reflux, changing/unpredictable bowel habits*
- Enlarged Uterus*
- Pain/lack of sensation during intercourse*
- Tilted uterus – associated pain in small of back
- Painful orgasm and associated lengthy cramping
- Sharp internal vaginal/cervical pain on sitting down*
- Pain radiating down one or both thighs/legs
- Rectal pain
- Frequent urination*
- Iron Deficiency*
- Hormonal imbalances – very high levels of estrogen*
- Extreme fatigue – needing to sleep during the day*
- Rapid weight gain*
- Water retention*
- Mood swings*
- Infertility – failure to conceive with IVF intervention
- Miscarriage – multiple miscarriage/complication
I put * next to the symptoms I have. Please note that these symptoms need to be happening for a long period of time, and are not something that comes and goes. These symptoms are also not always just related to adenomyosis, so if you feel something isn’t right, it is best to talk to your doctor. You know your body best!
Adenomyosis is typically found in middle-aged women who have had children, however, it can be rarely found in women in their 20’s, even if they have never been pregnant. This can make diagnosis difficult, especially when you are like me and do not fit the typical criteria. I went through 2 years of appointments and tests, and 17 doctors, before actually being diagnosed. Not to mention, the amount of doctor’s who mentioned adenomyosis but then said it was impossible because I had never been pregnant. It took years of “you’re just being over dramatic” “let’s try more hormones and more birth control” “this must be related to your stress and anxiety” and “let’s test you for std’s” before I found one doctor who finally told me the tests she wanted to perform were specifically for Adenomyosis. There are 3 main ways doctors look for Adenomyosis:
- Laparoscopy – using a laparoscope, surgeons are able to access inside of the abdomen and pelvis without large incisions.
- Gynecologic Ultrasonography – the patient starts the appointment with a full bladder to allow better visualization of the pelvic organs. Typically, the ultrasound is performed both transvaginally and regularly for maximum coverage of the uterus, its lining, and muscular wall.
- Magnetic Resonance Imaging – better known as an MRI.
Most doctors will perform multiple tests to truly diagnose you. In my case, I was lucky to find a doctor who would not cut me open (I was a dance major in college and could not afford to be out of practice for 2 weeks). I instead had multiple ultrasounds and MRI’s that determined my diagnosis. My doctor said judging the size of my uterus, the thickness of my uterus’s lining, and the fibroids seen; this would be my new normal.
Treatment plans are different for everyone, but I will share mine to give you an idea of what works for my body. My doctor and I spoke about my desire to keep my body as holistically healthy as possible, and luckily she agreed to go beyond the narcotics and surgeries that were previous prescribed.
A huge part of my life is what I put into my body, and how seriously I take my diet. I am on an anti-inflammatory diet path, as well as beginning to limit soy. This means I am gluten-free (did you know gluten is one of the main inflammation causing foods?) I also limit my dairy intake, only eat healthy fats, and really try to focus on non-processed foods. I also do my best not to eat meat unless I know it is from a source without added hormones. Knowing what I put into my body is a huge component to making sure I am not feeding my Adenomyosis.
We are also still trying to figure out a hormone treatment that works well with my body. There has been a lot of trial and error when it comes to birth controls and managing the estrogen levels in my body. So far, we have not found a great match, but I know better than to give up.
I also use essential oils to help control pain, muscle strains, and stress. I have tried acupuncture which provides pressure and stress relief. I also never underestimate the power of a good heating pad, bubble baths, and rest. If I am truly hurting, I push through as much as I can, go home, take a bath, and turn on Grey’s Anatomy reruns.
I will also have to go through physical therapy because of the severe muscle cramps that have now damaged my lower abdominal and pelvic muscles. However, my doctor does not want me to do that until we figure out a hormone treatment. Because you know, one step at a time.
Why did I share my story?
I chose to share my story for a few reasons. One being to raise awareness about adenomyosis, and another because I want my readers to know who I really am. This is a major part of my life and I am not ashamed of it. I am strong, and I refuse to ever let my condition take away my positivity. Trust me, having adenomyosis is anything but glamorous, but it is something I have present in my body and I have learned to not let it take over. You can be stronger than your chronic conditions, and you can have something that doctors “feel bad about diagnosing so young” and still live an amazing life. I push through the pain because it won’t kill me. I push through the bloating and bleeding because I have things to accomplish. And I push through having a chronic condition because I am determined to have control of how my adenomyosis is present in my life.