Living with the disease no one understands

by Kimberleigh
(USA)

I always had painful periods. My mom and dad figured I was a hypocondriac. I did too. I started at the age of 10 and, by the time I was 17 I was bleeding for 14 days out of the month. I would take at least one day off of school a month and, even when I was at school I struggled to focus due to pain or the effect of pain killers I was taking.

When I was 17 I had a laparoscopy as I was in such severe pain my gynae didn't know what to do with me. Turns out, I have a bicornuate uterus (and am missing a kidney) and each horn of my uterus had filled up with blood and closed themselves off. Hence the intense pain and the feeling that I had a pole shoved up my bum. They also discovered I am riddled with Endometriosis.

I even have it on my diaphragm. They burnt off as much scar tissue as they could and put me on the Depo injection. Which, after 4 months I told them no more as I gained 15 pounds from it and the mood swings were horrendous. I was put on Nordette (very old fashioned BC pill) and seemed to be able to control my body for a while.

When I was 22 I started having painful bowel movements and noticed what appeared to be lining from my rectum attached to my stool as well as blood. I tried not to freak out (I was living overseas at the time and couldn't afford to see a doctor) and just brushed it off. Bad idea.

At 24 after not having more than 4 periods a year (btw, Nordette killed many of the pain symptoms that went hand in hand with my Endo) I had to have a polyp removed from my rectum. The cause was all the Endo that had built up in my rectum - despite having only 4 periods a year.

At the end of 2011 I had a anterior resection of my rectum and had Endometriosis burnt off in every area they could find. I am literally now a short arse :) I was then put on the hormone that sent me into early menopause - some bad side effects but, no pain or periods for 8 months! However, my gynae decide the Mirena insertion was the way for me to go. Ha ha ha. Useless piece of rubbish. I have had to take Yasmin on top of the Mirena in an effort to control the bleeding and pain.

As I write this I'm lying in bed completely exhausted due to my bodies' internal fight with the Endo. My poor husband can't understand it but, it's such a hard disease to explain. I get chronic shoulder pain due to the Endometriosis being on my diaphragm as well as heavy periods, painful cramps and sometimes (especially around ovulation time) pain during sex.

If you try to explain to people why you have the symptoms you do, their general response is "but women have been having periods for millennia. You're just looking for attention." Yet, despite the idiots who have no idea what torture it is to live in the body I do, I still keep smiling. One doctor told me "we read about people like you in med school, it's an honour to meet someone like you in real life!"

And that's why, despite the pain and exhaustion, I'm learning to live with my disease and love the life I have. I'm unique and odd but, despite the fact that I'm a medical oddity, I'm still functioning (mostly!) as a normal human being :)