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Endometriosis: It Isn’t Just Period Cramps

Aug 27 2020 | Written by Miranda Vanhaarlem, graphics by Sissi Chen, in collaboration with Dr. Sarah Zadek, a licensed Naturopathic Doctor in Ontario and Jenna, a young woman sharing her experience with endometriosis (@endometriosis.jenna)

If you have read our past two blog posts, you may be feeling overwhelmed with the amount of conditions individuals who have periods can experience. Our sole purpose is not to worry or frighten our readers, but instead make these conditions known so us menstruators never have to hear “it is just period cramps, you will be okay.I want you to know that you are not alone and the pain some menstruators feel should never be dismissed or seen as overly dramatic.

This week our team decided to focus on endometriosis. Why does endometriosis deserve our attention? Despite the fact that it affects 1 in 10 menstruating individuals, endometriosis is still not very well understood. It can take an individual anywhere between 6 and 10 years to receive a diagnosis of endometriosis as it is often reduced to “a bad period” or gastrointestinal disorders. 

For this blog, we interviewed two individuals, Dr. Sarah Zadek, a licensed Naturopathic Doctor in Ontario and Jenna, a young woman with endometriosis who created the instagram account @endometriosis.jenna in order to share positivity & spread awareness on her journey. 

Dr. Zadek helps provide preconception healthcare for better fertility treatment outcomes and works with her patients to treat certain conditions that affect hormone regulation such as PCOS and endometriosis. She was able to answer all our questions surrounding endometriosis and she also shared her personal experience of being diagnosed with the condition at the age of 31. 

What is endometriosis?

Endometriosis is a painful disorder that occurs when endometrial (uterine) tissue is found in areas outside the uterus. This can include on or around the ovaries, on other structures within the pelvic cavity, and even in other locations around the body. Having space-occupying lesions can be intrusive enough, but because they are made of endometrial tissue, these lesions respond to hormonal signals such as estrogen.

Note: New research has found the following, 

Endometriosis is when tissue that somewhat resembles the lining of the womb (endometrium) is found outside the womb. Endometriosis and endometrium are not identical, in fact there are many differences between them. Endometriosis comes in many shapes and forms and has common patterns of occurrence within the pelvis. Very occasionally endometriosis can occur in other parts of the body, such as in the belly button, lung, and brain.” 

What are the symptoms of endometriosis? 

Many individuals often experience extreme pain throughout their menstrual cycles, surrounding both ovulation and menstruation. Pain in endometriosis can also commonly be experienced with intercourse (dyspareunia), with bowel movements (dyschezia), and can occur chronically without necessarily being linked to the menstrual cycle.

What are the first signs of endometriosis?

I always had minor menstrual cramping, but the intensity of the pain suddenly increased each cycle. My periods had become so painful that my blood pressure would drop and I started passing out. At home I found myself on my cold bathroom floor unable to move and at work I couldn’t stand.

What causes endometriosis?

A few theories about how the tissue may be able to migrate out of the uterus have been floating around for years. But ultimately, inflammatory responses play a major role in the development and progression of endometriosis. Endometriotic cells manage to escape destruction by the immune system by secreting chemical messengers called cytokines. These cells also have an increased expression of an enzyme called cyclooxygenase-2 (COX-2), which forms inflammatory compounds. As well, the activation of mast cells, which secrete histamine, may also contribute. Mast cells, when activated, can communicate with pain nerve fibers, creating more hypersensitive pain reactions.

How do you diagnose endometriosis? 

An ultrasound can detect masses and we can often identify the type of tissue making up the cyst or lesion by its density. Most commonly these types of masses are reported as a hemorrhagic cyst or endometrioma. However, the gold standard test is a laparoscopy as it’s the only way to confirm the diagnosis.

How old were you when you were diagnosed with endometriosis? 

I was 31 when I was diagnosed. I was working in a pharmacy within a medical building when I became faint from the pain. Because of where I worked I was able to see an MD immediately and had an ultrasound within 2 hours. That was the first ultrasound that showed a lesion. I had a repeat ultrasound a few months later which showed a lesion on my right ovary, measuring 5x7cm, consistent with an endometrioma. Within a few more months there were now two lesions and the first had grown. I had a consultation with an OB/GYN surgeon and a more in-depth ultrasound. It showed that in addition to the lesions on my right ovary, my left ovary was being tethered down and was immobile. I had surgery four months later to remove all the lesions before trying to conceive.

How do you treat endometriosis?

Endometriotic lesions can be surgically removed, but without controlling immune responses and/or hormonal signals, there is a risk of them recurring. This is why hormonal contraceptive medications are often used to help suppress and prevent growth of lesions. However, many women cannot tolerate hormonal birth control, or may be looking to become pregnant and therefore need to avoid hormonal contraceptives.

Naturopathic and orthomolecular medicines have much to offer in these situations as there are alternative anti-inflammatories, anti-tumour agents, hormone modulators, and other options for pain. Most recently, researchers have been investigating the role of the endocannabinoid system in pain and inflammation.

Can endometriosis cause infertility?

The short answer is yes, but it really depends on the nature of the lesions. We have to consider where they are located and how large they are. An endometrioma on an ovary or compressing a fallopian tube can absolutely affect fertility, but so can having surgery on the ovary to remove a lesion.

According to a 2017 article about 30 to 50% of women with endometriosis are dealing with infertility. The presence of lesions themselves can be an issue, but so can the underlying inflammatory responses, autoimmune conditions, and hormonal dysregulation (which often presents as “estrogen dominance”).

How has endometriosis impacted your life?

I was afraid I wouldn’t be able to get pregnant, but luckily that wasn’t the case. My surgery was successful but by the time I became pregnant, I had two new lesions pop up, and the pain that month – even though I was 5 weeks pregnant – was excruciating. I remember laying on my couch for 3 days unable to move, and the Tylenol they gave me at the hospital wasn’t cutting it. Not even close.

The hardest part is that it’s really common to get pain around ovulation AND menstruation. So that’s a lot of days feeling like you’re out of commission. More specifically, I would head out to go for a run (one of my favourite things in the world), and I couldn’t run… I could barely manage a brisk walk. I would try to lightly jog and just that motion would send me into a fit of tears.

Who or what has been your greatest inspiration throughout your journey with endometriosis?

Probably my sister, who also has endometriosis. She was diagnosed much earlier than me and went on to have three healthy babies. Watching her journey, I knew it was possible to have endometriosis and not be infertile, and this gave me hope.

What would your advice be to someone who has just started experiencing pelvic pain?

Don’t wait, get assessed. Pelvic pain is common but not normal. Have your MD run a “Day 3” hormone panel and get a pelvic and transvaginal ultrasound. There are many causes of pelvic pain, including fibroids and polyps. You may need to be assessed for nutrient deficiencies, sexually transmitted infections, and pelvic floor tone.

We want to thank Dr. Zadek and Jenna for providing us with their perspectives and personal stories. Us, as a society, need to better when it comes to acknowledging period pain for what it really is. Periods and everything that encompasses them should not only be discussed in hushed whispers. For any menstruators out there who are experiencing excruciating pain when it comes to your period, get assessed if you are able too, and just know you are not alone in your journey.