Annemarie’s Story

Hello fellow warriors and friends! I hope this weekend meets you well. A few posts ago I brought up the topic of how endometriosis can affect women of all ages from birth to death. And while the common public views endometriosis as a disease that affects women of “prime” childbearing age (20’s to early 40’s) its impact is much farther reaching. Today I will be sharing the story of a fellow warrior who is just one example of the impact endometriosis has at all ages.

This warrior’s name is Annemarie and she has been graciously communicating with me from across the country in Australia despite the time differences.

We will start from the beginning. Annemarie had painful periods and what was diagnosed as IBS from the onset of her initial period. At a young age she was diagnosed with fibromyalgia, chronic fatigue,1 and IBS as all other tests to explain her pain were inconclusive.

Her periods where so painful that she would vomit, faint, and even went to the emergency room a few times. But she went on undiagnosed. She pushed through the pain and lived her life. She was able to bear children and continued having no idea what was causing all of her pain. “I never heard of endo back then and no doctor ever mentioned endometriosis as a possible illness in my case”.

As she is going through menopause she either experiences periods with heavy bleeding and pain to no periods at all but still all the symptoms as if she was. It is common for her to experience general abdominal pain, cramping, hip discomfort and pain, lower back pain, nausea, bowel, and bladder pain at these times.

She recently read about an ultrasound method that, in some cases, can identify deep infiltrating endometriosis. She made an appointment and chased up a referral herself. She had a regular ultrasound just 3 week prior with no significant findings. The DIE ultrasound showed significant evidence of endometriosis. She has now pursued an endometriosis excision specialist who plans to excise all endometriosis seen on the ultrasound and likely more, as the ultrasound can not show the extent of the endometriosis.

Annemarie’s story is a powerful one that shows the importance of self advocacy and education. It shows how many times even our doctors are misinformed or miss the correct diagnosis. Also she bring up the subject of DIE ultrasound. Endometriosis is almost never seen on a normal gynecological ultrasound, yet women are often told they are “normal” because the ultrasound had no findings. If you are in pain keep pursuing further diagnostics. Laparoscopic surgery is the only 100% reliable way to diagnose or rule out endometriosis. That being said, women who may not be ready to make that step but still want to pursue further diagnostics can consider a D.E.I. ultrasound. It only shows advanced, deeply infiltrative endometriosis and will not show more superficial lesions For some this could be of help, particularly in women who are in their menopausal and postmenopausal years because the disease process is likely to be further developed and more evident. Unfortunately, even though this method of ultrasound was published 10 years ago very few physicians know how to perform it so finding people to do it is hard.

I thank for being vulnerable and willing to share her story. I hope this reaches people who need to hear it and maybe are in pain but haven’t considered endometriosis because of their age

1Okun, M. L., & Coussons-Read, M. E. (2007). Sleep disruption during pregnancy: How does it influence serum cytokines? Journal of Reproductive Immunology, 73(2), 158-165. doi:10.1016/j.jri.2006.06.006

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