It’s difficult to describe pain. When we talk to our doctors, we usually try to describe pain with words like “sharp” or “dull,” or by using a pain scale from one to 10. I’ve never felt I’ve been able to fully convey how endometriosis actually feels, and I’m often left with the sense that others think it’s not as bad as we are making it out to be, especially since the pain is invisible.

I often see women asking what endometriosis feels like because they think they might have it. There are many similarities between endometriosis pain and the pain that a woman would feel during her period, which I think is why endometriosis is commonly mistaken for a “bad period.”

So, what does endometriosis feel like? Endometriosis pain can vary from day to day (even hour to hour!), and it’s different for every woman. Some feel pain constantly, whereas others might only be in pain around the time of their period. As someone who has lived with endometriosis for 22 years, this is what it feels like for me:

Abdominal pain

Abdominal pain is the most common symptom of endometriosis. For me, this pain varies in strength and type. Some pains can come and go, whereas others will affect me for days afterward.

Leading up to and when I am on my period, I get a dull, low ache around my ovaries. My tummy begins to feel heavy and empty, and the pain lightly burns. When my period is heavy, my pain is often at its worst. This pain leaves me doubled up, unable to move. You will often find me curled up in a tight ball on the floor. It shoots through me like an electrical shock — burning. It can feel like contractions, or “tightenings” with intense pain, coming and going every few minutes.

Endometriosis also causes sporadic pains. Sometimes these pains ache away for days on end but, other times, they will take my breath away with how sharp and sudden they are. For no apparent reason, my tummy can swell and become hard. When this happens, it feels like everything inside swells and fights for space. I also get pain caused by my bladder or bowels. When they are full, they press on areas of endometriosis, and this leads to pain when I need to go to the toilet. I have screamed with the pain of urinating. Sometimes it has felt like I am tearing in half. When I need to empty my bowels, it feels like I have a red-hot poker stuck in there.

Leg pain

I never get leg pain on its own. My tummy will always ache, and then it feels like the pain radiates outward, down into my legs. They ache deep inside. If only one side of my tummy is hurting, I will only get leg pain on that same side.

Endometriosis can also affect the sciatic nerve. With this, I feel a sharp, burning pain deep in my buttocks that then radiates down the back of my leg.

Back pain

I get severe back pain, which is not helped by an accident I had years ago. Endometriosis only exacerbates this. When my tummy aches, my lower back aches and burns. It feels like it hasn’t been stretched out in a long while.

Shoulder, neck, and chest pain

Not every endometriosis sufferer will experience pain in the shoulder and chest area. It is a symptom of endometriosis on the diaphragm, which is thought to only affect up to 1.5 percent of women with the disease. For me, this pain starts around my right shoulder blade, runs up the side of my neck and down my arm. The best way to describe this pain is by likening it to a toothache. It is a dull, nagging ache that makes me feel nauseous. I find poking my fingers into my shoulder muscles soothes it momentarily, much like poking your tongue into your aching gum.

The chest pains do not affect my breathing as such, but rather the muscles in my chest, which in turn makes it difficult to take in deep enough breaths. The pains feel sharp and shoot outward, making me clutch at my chest.

Vaginal pain

Pain felt during sex (dyspareunia) won’t be a problem for everyone, but it is a common complaint. For me, it can feel like sandpaper getting rubbed inside me, and I get sharp pains that travel upward into my abdomen. More often than not, it will immediately reduce me to tears. This pain can affect me for days afterward.

What does your endometriosis feel like?

You can follow more of my journey over at www.emlwy.com.

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.