Michaela Abenson: My Endometriosis Story

My story began similar to most of my fellow endo sisters. My symptoms began at age 12 when I had my first menstrual cycle, every month the pain would be so bad which lead to fainting and missing almost a week off school.

By the time I was 15 I had been taken out of full-time education due to missing too much school and I was seeing my second gastroenterologist and this is a gastroenterological problem. I was told period pain is normal, this is something most young girls are told. I don't know why they are being told this but painful periods that cause painful cramps are not normal.

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"The feeling of getting a diagnosis is something that's hard to explain"

After numerous unpleasant tests, I was diagnosed with Chrons disease, put on steroids which lead to my hair falling out. At this point, I had a full head of hair loss and I wasn't getting better, at this point my mental health was also going downhill. I was fed up with doctors, hospitals, and tests. I spent the next few years being sent from specialist to specialist until one gastroenterologist told me he doesn't think the period pains are normal and I should see a gynecologist.

I had a laparoscopy and an MRI and at age 18 I was diagnosed with Endometriosis. The feeling of getting a diagnosis is something that's hard to explain. Not having a reason for your pain can drive you crazy, doctors don't believe you and you start to judge yourself as to if the pain is really real, so getting a diagnosis is a relief. Then you look up your illness and it hits hard. There's no cure, the treatment options sound dreadful. And the illness seems really confusing!   

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"I have been prescribed medical ketamine and a medical cannabis"

Since my diagnosis, I have had 9 excision surgeries. My endo spread to my bladder, bowel, and peritoneum wall. Over the years I've tried every pain medication and I have been under three pain teams. I have been prescribed medical ketamine and medical cannabis. I have been put into induced menopause twice (once for a 9 month period and once for 5), I have seen countless specialists, tried every contraception, and yet I still suffered.   

I'm lucky that with the help of fertility treatment I could get pregnant, many women aren't as lucky and this is a subject that needs to be spoken about very sensibly. Not a day goes by that I'm not grateful for my two miracles, however, being a mum with a chronic illness comes with a lot of guilt.  

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 "I had a full hysterectomy removing my uterus, ovaries, cervix, fallopian tubes..." 

In October 2020 I had excision surgery again, I traveled from Manchester to London to have it done by a top Endometriosis specialist. To cut a long story short the surgery ended up making me worse and caused internal bleeding. 9 weeks later I had no choice and had to have open abdominal surgery. I had a full hysterectomy removing my uterus, ovaries, cervix, fallopian tubes, as well as excision on my bowel bladder and peritoneum wall.

A hysterectomy is not a cure, for me the surgery was necessary, I also have adenomyosis and my uterus was badly damaged from surgery, pregnancy, endo, adeno, and adhesions. Endometriosis can return as it feeds of hormones, the return rate after a hysterectomy is much lower but it is still there, even though we don't naturally produce hormones there are hormones everywhere, in what we eat, drink, and in daily products.  

Although my Endometriosis pain is improving I am left with permanent damage to my organs. I am under investigation at the moment as my bowel is completely paralyzed. Currently, I have to self-catheterize and irrigate daily.

Endometriosis feels never-ending, I guess it isn't ever going to end. Once you have it you always have it, and I believe there is nowhere near enough knowledge for this complex illness.