Endometriosis: my life with you, or EMLWY as I often refer to it, is a very personal account of my life with severe/stage IV endometriosis. I've struggled with the disease since the age of 12, but wasn't diagnosed until I was 21. In February 2012, a flare up meant I had to go on long term sick leave and after being made redundant in the same year, I've been unable to work since. To add to all that, over the years, my health problems have evolved and I have also been diagnosed with fibromyalgia and borderline osteoporosis. I've also battled bouts of depression and anxiety along with 'endometriosis related pain' and infertility. In 2014, after 2 years of trying to conceive with a blocked fallopian tube and irreversible internal damage due to scarring and adhesions, we embarked on our first and, thankfully, only round of IVF and in the same year we welcomed a beautiful baby boy in to our lives.
Aside from my health, my name is Shireen and I'm now in my thirties. I live in a little village in the middle of England with my wonderful boyfriend, Daniel and our little boy, Hunter Ace. Daniel has been my rock since we became an item in 2010 and all of this, this horrible disease, has become his struggle too, but we work through it together and sometimes I wonder how I would ever cope without him and his loving support.
I know EMLWY features personal writing, and sometimes you may not want to read about some of the things I write about, but my goal is spread as much awareness about this terrible disease as possible. Please keep reading - the personal, sometimes gory, detailing doesn't feature in every post, and it means a lot to know that someone in the world is reading and supporting everything that I (amongst millions of other women) am going through.
I'm always happy to answer your questions so if you want to know something then please do get in touch. In the meantime, here are a few things I get asked more regularly...
How old are you?
30 something.... *weeps quietly*!
Where are you from?
I live in a little village in the Midlands in the UK.
Do you work?
After my endometriosis flared up in February 2012, I was unable to work due to the pain and went on long term sick from my job as a Personal Assistant. I was then made redundant a few months later and have since been on ESA (Employment and Support Allowance) until I am able to get back to work again.
Do you have a partner?
Yes. I've been with Danny since 2010 although we were friends for a few years before this. He's been a wonderful support to me.
Do you have any children?
We have a little boy called Hunter Ace who is a very special IVF baby.
What is endometriosis?
Endometriosis (pronounced end-oh-mee-tree-oh-sis) is a painful, chronic and sometimes debilitating gynaecological disease which affects millions of women worldwide. It occurs when tissue similar to that which lines the uterus (called endometrium) is found growing outside of the womb, usually in the pelvis (although it can be found anywhere in the body), and develops in to growths or lesions.
You can find out more about endometriosis in the Endo-What!? section here.
I think I might have endometriosis - what are the symptoms and what should I do?
The most common symptom of endometriosis is chronic pelvic pain which can feel similar to menstrual cramps. Often though, the pain from endometriosis can occur at other times in a woman's cycle. Other symptoms include heavy, irregular periods, pain during sex or after sex and problems going to the toilet. You can find out more about the symptoms of endometriosis here.
If you think you may have endometriosis or if you suffer from heavy, irregular periods and intense pain, please speak to your doctor. It's NOT normal for periods to be like this. It may not be endometriosis, but it could be something else creating problems. If you feel something isn't right with your body, go with your own instincts and push for an answer.
When were you diagnosed?
In 2005, when I was 21. I began having problems with it when I started my periods at the age of 12 but thought this was all normal. It was only when I started experiencing pain during sex that I questioned the doctor which led to a quick diagnosis of endometriosis. You can read about my initial diagnosis and earlier story here.
Have you had any surgery for your endometriosis?
To date I've had two diagnostic laparoscopies (2005 and 2012) and two keyhole laser surgeries with adesiology for removal of endometriosis (2007 and 2013).
Have you tried changing your diet?
Besides eating healthy and steering clear of caffeine and alcohol, I've only tried going dairy free to date. It didn't make any difference to my endometriosis at all and I now have to be careful with what I eat with regards to calcium as I have borderline osteoporosis.
Have you been on any treatments?
I was on various combined contraceptive pills from the age of 15 and was on and off them until 2012. I had a Mirena coil for 2 years. I've been through add-back therapy 3 times now with two rounds of Zolodex injections (once with HRT) and one round of Decapeptyl injections (again with HRT). I've been turned down for trying out any experimental treatments as my bones have weakened due to the other treatments I've tried. Post-pregnancy, I went back on to a progesterone only contraceptive pill, however, I came off that just over a year later. I now just take Amitriptyline for my fibromyalgia.
What does EMLWY stand for?
I often refer to this blog as EMLWY - it simply stands for "Endometriosis: my life with you".
Can I share my story on EMLWY?
Yes! I try and publish fellow endo sisters stories of life with endometriosis as often as possible because I feel it's important to share all the different aspects of this disease that we experience. If you are interested in sharing your story then please email me at shireen.emlwy.gmail.com along with a photo. If you do not wish to share your name then I am happy to keep the post anonymous for you.
I do not pay for stories. I have been asked this in the past and, as you can tell if you read the blog, I am out of work myself so my financial situation is less than desirable.
I'm interested in guest writing for EMLWY - would you be interested?
Yes! Obviously, it has to be in regards to endometriosis, but if you are interested in guesting then please contact me.
How can I contact you?
Head on over to the Contact page or click on the buttons to the left.