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Adenomyosis – The Missed Diagnosis for Women

In the realm of women’s health, most women have heard of PCOS, endometriosis, or fibroids.  But mention a diagnosis of adenomyosis and you’ll be met with blank stares.  Why is one of the most common uterine conditions something most women have never even heard of?

Adeno-whaty-osis?

Adenomyosis is a condition that is very similar to endometriosis.  In adenomyosis the inner layer of the uterus, the endometrium, pushes into the muscular layer of the uterus, the myometrium and decides to stay there. Endometriosis occurs when those same endometrial cells set up shop outside the uterus – on the outer walls of the uterus, the ovaries, the fallopian tubes and throughout the abdominal cavity. 

Unlike endometriosis, in most cases of adenomyosis, the endometrial cells that are out of place are not functional – they don’t respond to the hormones of our menstrual cycle and go through the paces of shedding blood each month. 

A Common(ly Missed) Diagnosis

We don’t really have a good estimate of how many women are currently experiencing adenomyosis.  Unlike many other gynecological conditions, adenomyosis diagnosis criteria aren’t as well established internationally.  Some studies estimate up to 20-30% of reproductive aged women may have adenomyosis. 

Up until recently the only way to diagnose adenomyosis was to do a hysterectomy, and then take a look at the layers of the uterus. Now (thankfully) we can diagnose adenomyosis through an MRI. 

Symptoms of Adenomyosis

Half of women with adenomyosis will never have symptoms that are significant enough for them to seek care.  They may notice they are having heavier or more painful periods, but they often chalk it up to getting older.  Women who do experience symptoms tend to be older – between the ages of 35 and 50.  Adenomyosis is rare in postmenopausal women, except when the drug tamoxifen is involved. 

Classic symptoms of adenomyosis are:

  • Painful periods
  • Heavy periods
  • Abdominal pressure and bloating
  • Pain during sex

In adenomyosis the uterus is also enlarged and lumpy, but most women wouldn’t notice this until it gets really enlarged. 

If It’s Not Adenomyosis

The most common misdiagnosis for adenomyosis is uterine fibroids.  Another type of benign (non cancerous) growth in the uterus, fibroids can grow in the wall of the uterus, on the outside wall of the uterus, just under the uterine lining or hang into the uterus.  Both adenomyosis and fibroids cause heavy and painful periods.  And some unlucky women can have both these conditions at the same time. 

Treating Adenomyosis

Adenomyosis is more common as women get older, and the potential for estrogen dominance increases.  Many women respond well to approaches for reducing estrogen dominance such as DIM, I3C, calcium d-glucarate, B-vitamins, probiotics and bioidentical progesterone.  Other options include treatments that reduce heavy periods, such as shepherd’s purse and ginger.  Anti-inflammatories such as turmeric and ginger may also be helpful for reducing the cramping associated with adenomyosis. 

Most importantly, you should consider working with a Naturopathic Doctor or functional medicine practitioner to develop a strategy for managing your adenomyosis symptoms, especially if you want to prevent a hysterectomy down the road.  Working with someone who can guide you to optimal hormone balance can be life-changing for women with adenomyosis, and the consequences of hormone balance (better moods, more libido, more energy) can help you live the fired up life you deserve.

Disclaimer

The advice provided in this article is for informational purposes only.  It is meant to augment and not replace consultation with a licensed health care provider.  Consultation with a Naturopathic Doctor or other primary care provider is recommended for anyone suffering from a health problem. 

Selected References

Taran FA, Stewart EA, Brucker S. Adenomyosis: Epidemiology, Risk Factors, Clinical Phenotype and Surgical and Interventional Alternatives to Hysterectomy. Geburts Frau. 2013;73(9):924-931. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3859152/

Naftalin J, Hoo W, Pateman K, Mavrelos D, Holland T, Jurkovic D. How common is adenomyosis? A prospective study of prevalence using transvaginal ultrasound in a gynaecology clinic. Human Repro. 2012;27(12):3432-3439.

Endometriosis and Fatigue

One of the most common symptoms of endometriosis is one that is not being adequately assessed or managed – fatigue.  A 2018 study found that a majority of women with endometriosis experienced fatigue, a significantly higher number than in a control group of women.

Fatigue and Endometriosis

Women often report fatigue to their doctors, and many are disappointed by the lack of concern, or downright dismissal, of their symptoms.  Women in my practice have heard:

            “We’re all tired”

            “You’re just getting older.  Feeling tired is part of aging.”

            “Tired is just another word for being a parent.”

            “Try getting more sleep, you’ll feel better after a good night’s sleep.”

            “I could give you some Ambien…”

The reasons why women with endo have more fatigue are likely different, depending on the woman’s experience.  Some common contributing factors identified in the study include insomnia and sleep loss, depression, pain (causing both depression and sleep loss), and significant stress.  Living with a chronic pain condition like endometriosis is likely to be a drain – on your body, on your mind, on your emotions, and on your energy.

Managing Fatigue in Endometriosis

Unfortunately, many doctors don’t screen women with endometriosis for fatigue, and are not offering treatments to women who do report fatigue.  But there are some things you can do.

  1. Remove gluten from your diet.  Studies have found that eliminating gluten from your diet can reduce pain associated with endo for about 75% of women.  Removing gluten can also reduce brain fog and improve energy.  I suggest doing at least 6 weeks gluten free to see how it can impact your endo, and your energy.
  2. Take an omega 3 fatty acid supplement.  Used by the body to reduce inflammation, omega 3s also help to keep your nervous system, including your brain, functioning optimally.  Studies suggest that women with endometriosis take between 1-3g of omega 3s per day.  If you choose a fish based omega 3, be sure to choose one that is free of mercury, PCBs and other contaminants.
  3. Get a good night sleep.  There is nothing that will zap your energy more than a poor night sleep.  And if you can’t sleep, consider taking a melatonin supplement.  One study found that taking melatonin decreased pain scores in women with endo by almost 40% – not to mention how it impacted their sleep! 
  4. Try meditation.  It’s a bit cliché, but seriously, if you aren’t meditating, why not??  The benefits of meditation are almost too numerous to count, but improving sleep, calming stress, improving mood and supporting energy are certainly among them.  Meditation doesn’t have to be hard – you can download free, or inexpensive apps, and meditating for just 10 minutes a day can have positive benefits.  So give it a try, seriously! 
  5. See your Naturopathic Doctor.  Ultimately, fatigue is a real symptom of endometriosis.  It may be overlooked by many doctors, but it should not be overlooked by women.  You have the capacity to abundant energy, to share your magnificent self with the world.  When you work with an ND you get the ultimate in personalized medicine.  Your ND will help you to develop a strategy to treat your symptoms of endometriosis – including fatigue. 

Disclaimer

Fatigue is a common symptom of endometriosis.

The advice provided in this article is for informational purposes only.  It is meant to augment and not replace consultation with a licensed health care provider.  Consultation with a Naturopathic Doctor or other primary care provider is recommended for anyone suffering from a health problem. 

Select References

Ramin-Wright A, Kohl Schwarts AS, Geraedts K, et al. Fatigue – a symptom in endometriosis. Human Reproduction,33(8);2018:1459-1465

Schwertner A, Cocneicao Dos Santos CC, Costa GD, et al. Efficacy of melatonin in the treatment of endometriosis: a phase II, randomized, double-blind, placebo-controlled trial. Pain. 2013;154(6):874-81.

Marziali M, Venza M, Lazzaro S, Lazzaro A, Micossi C, Stolfi VM.  Gluten-free diet: a new strategy for management of endometriosis related symptoms? Minerva Chir. 2012 Dec:67(6):499-504.

Endometriosis Staging

Many women in my practice have never heard of endometriosis before they are diagnosed with it.  And often that diagnosis took years to get.  Endometriosis is a notoriously difficult condition to diagnose – it can’t always be seen on an ultrasound and diagnosis often requires an MRI or a surgical procedure (a laparoscopy) to identify the endometriosis and provide information on staging.

The symptoms of endometriosis are often ignored as well, both by women and their health care providers.  Many women have to see 3 or more doctors before they receive an appropriate diagnosis – and delaying diagnosis can make this already difficult condition even more difficult to treat.

Endometriosis Staging

Once a diagnosis of endometriosis is made many women are given a staging level for their endo.  The American Society for Reproductive Medicine classification is based on a point system looking at the following characteristics:

  1. Location and size of the endometriosis – on the peritoneum and ovary – and whether it is superficial or deep
  2. Obstruction (obliteration) of the cul de sac – partial or complete
  3. Adhesions on the ovary and fallopian tubes – filmy or dense and their overall size

Based on the points given for these findings, a stage is given. 

            Stage I – Minimal endometriosis (less than 5 points)

            Stage II – Mild endometriosis (6-15 points)

            Stage III – Moderate endometriosis (16-40 points)

            Stage IV – Severe endometriosis (>40 points)

*Follow the link for the exact point calculations. 

Concerns with Staging Endometriosis

While staging of endometriosis can be useful for women and their health care providers to understand the overall appearance of the endometriosis, the staging system has some flaws.

The staging system only describes what the endo looks like – it doesn’t help a woman (or her health care team) predict pain levels, response to medications, risk for associated conditions, or quality of life.  Women with Stage IV may have minimally painful periods, while women with Stage I may suffer incredibly each month. 

Ultimately, I don’t treat women based on staging of their endometriosis.  I treat women based on their symptoms and their desired outcomes.  A woman who wants to get pregnant will be treated differently than a woman who wants to reduce pain – every woman in my practice is treated individually to help her achieve her optimal state of health while living with endo. 

For more information on endometriosis, check out the other articles in my endometriosis series, including Understanding Endometriosis, Endometriosis in Adolescence, Endometriosis and Infertility, The Endometriosis Diet and Endometriosis and Naturopathic Medicine.

Disclaimer

The advice provided in this article is for informational purposes only.  It is meant to augment and not replace consultation with a licensed health care provider.  Consultation with a Naturopathic Doctor or other primary care provider is recommended for anyone suffering from a health problem.