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:: This column was originally posted on Endometriosis News ::

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 1-10.  I’ve never felt I’ve been able to fully convey how endometriosis actually feels, and I’m often left with the sense 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 and I think this 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 is variable in strength and type. Some pains can come and go, whereas others will affect me for days afterwards.

Leading up to and when I am on my period, I get a dull, low down 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. Often you will 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, 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 is also swollen and fighting for space. I also get pain caused by my bladder or bowels. When they are full, they press on to 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 being torn 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 it’s own. My tummy will always be aching and then it feels like the pain radiates outwards, down in to 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 and this then radiates down the back of my leg.

Back pain
I get severe back pain, 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% 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 toothache. It is a dull, nagging ache that makes me feel nauseous. I find poking my fingers in to my shoulder muscles soothes it momentarily, much like poking your tongue in to your aching gum.

The chest pains do not affect my breathing as such, but the muscles in my chest, which in turn makes it difficult to take in deep enough breaths. The pains feel sharp and shoots outwards, 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 being rubbed inside me and I get sharp pains which travel upwards in to my abdomen. More often than not, it will immediately reduce me to tears. This pain can affect me for days afterwards.

What does your endometriosis feel like?

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