Having lived with the symptoms of endometriosis for about 21 years now ― 12 of those diagnosed ― I’ve had my fair share of moments when I’ve felt that things do not feel quite right with my health. I’ve questioned a diagnosis or even reeled things off to doctors that I suspect might be happening with my health. I’ve been told to stop Googling symptoms and asking so many questions. It can become disheartening, especially when you want answers or if you are chasing a diagnosis.

I want to use one occasion as an example. In 2009, I began to experience pain in my right shoulder. It hurt, it ached, it was difficult to move my arm and neck because of the pain and it made me feel sick. It was a deep, gnawing pain that made you want to dig your fingers into your shoulder blade, much like when you dig your tongue into an aching tooth. I initially thought I had been sleeping in an odd position. But I started to notice that it really only hurt when I was on my period. When I next saw my doctor, I asked if it could be related. It had to be. He laughed at me and said it definitely wasn’t related. And that was that.

I knew something wasn’t right and I was in pain with it every month. Sometimes, it would randomly start hurting when I wasn’t on a period too. I made sure to mention this pain to my specialist as soon as I saw him for my next checkup at the hospital. After all that time, I was still a little taken aback when he said that a pain in your shoulder area could indicate diaphragmatic endometriosis. He told me that he had previously checked my diaphragm and it was clear of endometriosis, but he would check it at my next surgery. Which he did, and there it was: dots of endometriosis. The reason behind all these pains.

However coincidental the pain seemed to be, I always thought that it couldn’t be endometriosis. I mean, this pain was in my shoulder! It was about as far away as it could get from the normal abdominal pains I was so used to having. And, at this time, I still was pretty lost when it came to endometriosis. I had only been diagnosed for four years and I still didn’t know much about it all. I was yet to find the amazing support system of online endo sisters. But I knew my body, followed my instincts, and knew that first doctor was wrong.

I still have moments when I feel anger toward him. How many other women had come to him with issues linked to menstruation and had been laughed at? How many other women had he let down by not listening to them? But he did teach me one thing, and I believe it’s one of the most important things for any woman with endometriosis to know: Follow your instincts.

Listen to what your body is telling you. If you are dealing with discomfort on a regular basis, look for a pattern or make a note of when that pain is happening. Does it coincide with anything else? Does it coincide with your period, perchance? Ask questions ― not only with your health practitioners, but also ask women online if you can. Scour the internet for clues. If I hadn’t asked, if I hadn’t followed my own instincts, I would probably have never gotten my answer. And, remember this, no one knows your body better than you. No one else knows how you are feeling and I would assume the majority of our own doctors have never had endometriosis, so it’s as much our job to educate them as it is for them to educate us.

Speak up and be heard, ladies, and get your answers.

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.