Apologies for the super long post. Just wanted to take the time to mention an illness that is suffered by so many but understood by so few.
ENDOMETRIOSIS (often known as the invisible illness - because on the outside sufferers appear completely healthy. Also, because there is such an ignorance or lack of understanding that sufferers feel invisible and alone.) cocktail party wears in navy
REALITY OF ENDOMETRIOSIS:
* 1 in 10 women have Endo
* It takes on average 7.5 years to be diagnosed
* There is NO cure !
* Treatments available include hormone control or invasive surgeries
* Internal bleeding causes cysts & scars. The Endo grows on these and can stick to stomach lining, bowel even kidneys causing a lifetime of health issues
* Pain - Endo pain is not just cramps! It is compared to labour pain. Agonising, shaking, curled up, won't go away PAIN ! On a good day you have a bloated belly, feel nauseous & physically drained.
* Doing simple things such as day to day tasks or going to work become a hope rather than a reality
* You become emotional, moody, frustrated. No one understands the reality... Often brushed off as being dramatic or lazy
* You feel like a burden, worthless, and INVISABLE
My own ENDOMETRIOSIS started when I was only 11 years old !
Looking back I remember writhing round in agony on the floor of the gym changing rooms at school. Going on my lunch break at work and waking up in hospital (I had blacked out from pain).
Back then I hadn't even heard of Endo.
Things settled as I had my children but during pregnancy I was told I had a cyst on my liver.
Over the past few years its crept back.
I was sent to hospital after a month of constant pain ONLY then was I referred for investigation for endo! ( I have already been tested for IBS, food intolerance, hormone imbalance & various blood works.)
I now know I do have Endo as well as 2 other cysts and am on the wait list for surgery. 24 years it took to be diagnosed. 24 years !! My surgeon was dumbfounded after reading my notes.
In one day I need a laparoscopy, hysteroscopy, a marina fitted to stop the bleeding, cysts removed, a sample of the endo removed and depending on how bad it is when they go in .. I may need to have everything taken out!
I am lucky that I have my children. Some women struggle with infertility and don't have that luxury.
I feel like a burden on my husband and let down to my children most days.
I have never discussed my illness before but feel many women are left to suffer this alone and it extremely common!
All we really want at the end of the day is a hug, support and not to be INVISABLE.
The fact I'm writing this at 5am.. Another symptom! Insomnia..
This post isn't for a pity party only 20% of people have actually heard of Endo !
For anyone who has a daughter, sister, friend who complains of any symptoms... Xxx