An Introduction to ‘Living with Endo’

An Introduction to ‘Living with Endo’

The appearance of endometriosis in my life came about slowly; it filtered through in dribs and drabs, and then one day, gained momentum until my entire existence centered around it.

I started my period later than most girls I knew, and even then, it didn’t really exist. It was light, lasted three to four days, and I had no cramping. But what I did have throughout my teens was severe hormonal mood swings. They were cripplingly low to the point of feeling suicidal — continuous poor health, stomach problems and bloating, bladder dysfunction, migraines, chronic exhaustion, and an unexplained stabbing pain that shot down from my belly button and would cause me to buckle and fall at its mercy.

The rest of the symptoms caught up with me at 19: painful sex, excruciating periods and, like so many who have waited the average seven-plus years for an answer, it took five more years to be diagnosed. This is another story for another time, but my experiences with the doctors, and the many hormonal treatments that my body just won’t tolerate, left me with nothing but painkillers and antidepressants to get me through my endometriosis symptoms.

I began looking at my lifestyle choices when I was forced into a corner and left to find my own way with endometriosis yet again. Due to an administrative mistake at the hospital, I lost my place in the wait for my second surgery and was told I’d have to redo the entire process — right from the doctor’s referral. I was due to travel to see family, so I knew I would have to start the process on my return, four months later. I was desperate and had no idea how I was going to keep going until surgery, which could have been anything up to a year.

Making a commitment

At some point during traveling, I either made a commitment to find a way to cope or I stumbled across the possibility of managing the condition, and decided to dedicate myself to it. I don’t remember which came first; all I know is that one day I was committed and I’ve been working through that journey ever since.

I began experimenting with new recipes after reading how various foods can trigger endometriosis symptoms, and I cut down on my incredible coffee intake and insane sugar consumption. I also was spending a lot of time with a relative who is a masseuse and aromatherapist, and after picking up her many alternative-healing books, I became fascinated by the possibility of being able to manage the disease. As my periods became easier, my determination and encouragement grew.

Fast-forward three years, and I’m now on the other side of my journey, but am still very much in the learning phase. I eat a plant-based diet, but am constantly refining as I learn what my body needs and what makes my symptoms worse. I am in the best place I have been in years — emotionally, mentally and physically (though I still have tweaks to make). Currently, my periods are my main focus. My first few days used to be excruciating. They’re now manageable, but I want to see if I can get them down to “normal.”

Learning how to manage endometriosis is not always an easy process. I’ve lost friends as a result of my lifestyle changes and have been told “I’m too extreme” (though they have no idea how extreme it can be to live with this condition). I’ve found new friends who are on similar journeys, and I’ve changed my job three times in three years in my quest to find the right support and a less-stressful environment. I’ve considered leaving London and even the country, and I’ve cried my way through therapy. But throughout it all, as I’ve become stronger and happier, each hurdle has always felt worth it.

This new column will document everything I’ve learned so far and everything I’m learning to help you on your own journey of living with endo. If I haven’t yet tried a treatment, I’ll do the research and speak to those who have, so you can make an informed choice about whether it’s right for you. You’ll also find more general accounts of my experiences, from struggles with doctors to communicating my needs in the workplace.

We are all different, and while our bodies respond differently, I believe we are all in this together. I hope my experiences may help you find what’s right for you, and you’ll be able to move forward into a healthier, happier life with endometriosis.

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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.

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