Endometriosis pain is a unique experience for each sufferer. It can affect different locations and be triggered by a number of things. And, if you don’t have endometriosis you truly can not appreciate how immobilizing endo pain can be. Hence, why many healthy people have trouble digesting the reality that is chronic pain. Yes, it’s ongoing. And yes it occurs on a daily basis. No, taking medication rarely provides relief. Instead, it remains a low hum in the background of your daily life. Sometimes, it’s easy to manage it. While other times you’re consumed by it like a tidal wave.
Describing Endometriosis Pain
I’ve experienced endo pain on so many different levels. In the beginning, I only had painful periods that would disrupt my life and lead to excruciating pain. This soon progressed to me experiencing ovulation pain, painful bowel movements, chronic pelvic pain outside of my period, endo-belly flare-ups, sciatica, leg pain, rectal pain, and lower back pain. And while endo pain varies from person to person the sensation is often described the same. Feelings of having intense labor pains. Or struggling with sharp, stabbing sensations at various pain points. Oftentimes, a dull, gnawing and throbbing agony felt in specific locations.
Where Is Endometriosis Pain Felt?
My endometriosis pain manifested itself in various locations. From my pelvis, lower back, legs, groin, rectum, and sides of my abdomen. But, each endo sufferer will experience pain in different places depending on how the disease manifests itself in the body. Wherever there are endometrial lesions, scarring or adhesions present there will be an increase in irritation, inflammation, and pain. Common pain sites associated with endometriosis are the pelvis, lower back, legs, groin, rectum, vagina, and anus.
What Causes Endo Pain?
In short endometrial lesions, scarring and adhesions cause endometriosis pain. This is due to the irritation and inflammation they cause on the affected areas and organs. Thus, leading to pain and other endo symptoms. Additionally, there are other factors that aggravate endometriosis and contribute to pain and flare-ups.
Intimacy was difficult for me. I struggled with pain upon penetration. There were also some instances where I would feel an intense dull, throbbing ache from my vagina all the way to my anus. The reason for sex causing endometriosis pain is due to the presence of endometrial lesions behind the vagina, and lower part of the uterus. These lesions can irritate the uterine nerves and ligaments. Usually, thrusting during sex is the main cause of aggravation. Therefore, leading to growths and adhesions being pushed and pulled during sexual activity.
Painful Bowel Movements, Urination & Abnormal Bowel Habits
Another pain point for me with my endometriosis was my bowel habits. I struggled with irritable bowel syndrome-like symptoms that led to constipation and straining with bowel movements. Furthermore, there were times where it hurt to empty my bladder and I would get sharp pains in my pelvis.
Most of this pain was due to adhesions and scarring in the bowels, and the bladder. This is a result of the bowels becoming stuck to the ovaries, uterus or pelvic sidewall. In turn, this can cause painful bowel movements and pain during urination. Additionally, scarring in the bowels can lead to constipation or diarrhea.
Painful Periods & Ovulation Pain
As I mentioned earlier painful periods were the primary symptom of my endometriosis for many years. The first 24 hours of my period were the worst. I was feverish, nauseous, and completely immobilized. My cramps were so intense I would bang my head against the wall or scratch at my arms to distract myself from the pain. It felt like Edward Scissorhands was trying to claw his way out of my pelvis. The older I got the worse my periods became. In my late teens, my symptoms progressed to me having issues with what I now realize was ovulation pain. I would get sharp pains on either my right or left side. They were dull little aches that would last for either a few hours or all day.
Stress & Overexertion
At the height of my endometriosis, I found that stress and excess physical activity would trigger flare-ups and pain. The simple things that you probably take for granted such as walking your dog, or going to an event with a friend. These normal activities would often lead to me being bedridden for weeks. I remember going home for a family reunion and experiencing what I thought was a never-ending flare-up. I was bedridden for weeks. Additionally, it’s why I had to quit my job and sought self-employment. It had gotten to the point where having a demanding and physical job had become too much for me to handle. My pain levels were through the roof and my mental health was in shambles.
But why is this? A 2008 study revealed a positive correlation between stress and endometriosis (3). It was found that high-stress levels contributed to an increase in endometrial proliferation and more pain. The main reason for this is due to cortisol and inflammation. For starters, stress increases cortisol levels. Elevated cortisol levels impair immune system function. Therefore, creating more inflammation in an already inflamed body. Which in turn causes endometriosis pain and flare-ups.
Trigger Foods & Food Intolerances
Something else that contributed to pain and flare-ups was my nutrition and the foods that I was consuming. Since there was endometriosis on my peritoneum I had a lot of gastrointestinal issues. I would constantly find myself struggling with awful flare-ups that caused my abdomen to swell and become bloated. I would get a really bad fever, become nauseous and unable to eat. Moving was also impossible. It literally felt like I was going to explode at any minute. I never thought that the foods that I was eating were responsible for these flare-ups.
Indeed, there is little research regarding how nutrition impacts endometriosis. But there are studies that explore the improvement of symptoms when dietary changes are applied. Such as a 2013 study that found an increase in vegetables and omega-3 fatty acids decreased endo symptoms (4). And, there are many endo sufferers that follow an anti-inflammatory style diet and find relief. This style of diet focuses on decreasing or eliminating pro-inflammatory foods such as alcohol, caffeine, dairy, gluten, added sugar, and processed foods. I myself discovered that when consumed in excess these foods led to flare-ups and pain. Hence, why removing them helped in decreasing my pain pre and post-surgery.
In Reality, It’s Indescribable
Trying to explain endometriosis pain is hard. Because I know that no matter the adjectives, the explanations, or the real-life examples I use. There will still be people that stigmatize those with chronic pain and chronic illness. Especially if those people happen to be women in pain. For reasons beyond my comprehension, there is judgment and disbelief when it comes to women expressing the validity of their pain. I’ve had doctors question my pain and gaslight my symptoms. Close friends and family have debated whether what I experienced was real. Perhaps, I was just making it all up or being dramatic. These stigmas and little judgments are what makes endometriosis so hard to diagnose and even more beastly to treat. Because women aren’t believed.
The question shouldn’t be what does endometriosis pain feels like. No, instead it should be why do you not believe women with chronic pain. Why are we stigmatized, judged, called lazy, addicts and other unfair labels? What’s the gain from speaking on a condition and experience you can’t comprehend and haven’t gone through? Perhaps the next time you want to doubt the pain of another do some inward reflection and ask why is it so important to prove that person wrong. Or, to belittle their experience. Because the real issue isn’t the existence of my chronic pain. It’s your ignorance and privilege.
- Everyday Health | What to Do When Sex Hurts with Endometriosis | by Julie Davis Canter, medically reviewed by Lindsey Marcellin, MD, MPH
- Center for Endometriosis Care | Endometriosis and Bowel Symptoms | by Ken Sinervo, MD, FRCSC, ACGE, Medical Director, last updated 2018
- Science Daily | Uncontrollable Stress Worsens Symptoms of ENdometriosis | source American Psychological Society l April 10, 2008
- Reproductive Biomedicine Online Journal | Diet and Endometriosis Risk: A Literature Review | Fabio Parazzini, Paolo Vigano, Mossimo Candiani, Lugi Fedele April 2013 Vol 26, Issue 4 pages 323-336
About the Author
Hi, my name is Kathleen but you can call me Kat. I’m a health and wellness professional turned freelance writer and content creator. You can find me on YouTube and Instagram. If you take the opportunity to visit me on my other platforms don’t hesitate to leave a message, I would love to hear from you!
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