A Tale of Endo

Last updated: April 2022

My pain began at the age of around 14, my story is the same as many others, was given various misdiagnoses and made to feel like I was making it up and just simply couldn’t handle a ‘bad period’. No one ever suggested Endo.

My doctor said it sounds like endometriosis

I moved out of my parent's house when I was 21, went to a new doctor and she was amazing and quickly said it sounds like endometriosis. Within 12 months I had my first surgery to diagnose and remove Endo. However, when I woke up I was informed it was too extensive and they had to rebook me in. So later in the year, I have surgery to remove it. I was told they were 99% sure it wouldn’t reoccur. Mmmmm.

It did recur

I then went on to have emergency surgery as my ovary had increased to the size of a grapefruit, and then another extensive surgery in 2018, which involved deep nodules in my bowel, my ureters had to be stented and I had a 4x5cm cyst on my ovary amongst all the other adhesions in the usual places. I was out on Prostap for 6 months after which sent me crazy and I nearly divorced my poor husband!! Late 2019 I began to experience symptoms again, and I am now on the waiting list for another surgery, my bowel is much worse this time and requires resection, and they’ve put me on Prostap again whilst I wait for a surgery date. I suspect it’s on my diaphragm as I get all the symptoms but have had to fight to get them to agree to check when I have my surgery and I’m still not confident they will.

Thinking about children

I have battled with the pain of not being able to conceive which whilst I don’t allow it to take over my life. I can’t stop the pain when someone announces their pregnancy or when I see kids and their mums laughing or playing at the park together.. but I have my little cockapoo and she brings me all the joy I could wish for! 🐾

It isn't the pain that bothers me most

The pain is hard to live with but what has hurt me the most is the lack of care from our healthcare providers. The lack of knowledge, compassion and general awareness of this condition. The fight to feel heard has at times made me feel so small and brought me to my knees and made me want to give up. I’m grateful of the support our Endo sisters show one another and thankful for my husband who is my rock. I’m hopeful that one day, there will be a cure for all the women of our future, and we can be proud that we paved the way for them.

I just try and be grateful of the life I have as this condition has taken enough from me already.

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