It isn’t just about painful periods and dealing with more blood than normal, endometriosis is much more than that.
It’s cramps every other day, chronic fatigue, dizziness, loss of appetite, anxiety and depression, and then crippling periods which take away your ability to stand and reduce to crying on the bathroom floor.
It sounds dramatic that something every woman undergoes can be so debilitating for some, but for one in ten women, endometriosis is a horrible disease that blights our everyday lives.
Niamh Spence, 25, from Manchester, has suffered from crippling periods since she was 14
My story began back when I got my first period, at 14. For weeks before it even started, I had cramps that would cause me to bend over double in class and would make me feel dizzy, sweaty and sick.
I was told they would settle, and that this was the normal transition that all of my friends had experienced.
My whimpering was met with a staunch response from doctors who claimed, ‘All women go through this’.
Heartbroken teenager reveals she wasn’t invited to her…
Mr. and Mrs. Dolittle! Couple with SEVEN rescue animals -…
Man who dubs himself ‘Lord of the wives’ says his marriage…
Was Kylie Jenner too young to get fillers? Surgeon reveals…
At university I suffered a miscarriage at seven weeks, which now is believed to be a result of my underlying endometriosis.
My then-boyfriend and I had barely come to terms with the pregnancy before days later it was taken away from us.
I am now 25 and I still have heavy, painful periods every month that no amount of painkillers seemed to shift.
It’s 11 years on since that first period and I still experience a crippling period every month that lasts for up to eight days, which not only stops me from working but also leaves me lying in bed unable to move from the fetal position.
Niamh says: ‘My story began back when I got my first period, at 14. For weeks before it even started, I had cramps that would cause me to bend over double in class and would make me feel dizzy, sweaty and sick’
Additionally, I suffer fatigue and cramps on an almost daily basis and have regular bleeding (or spotting) every few days throughout the month.
Numerous trips to see my doctor and even visits to AE when the bleeding and pain became too much to bear were often met with little explanation.
Various contraceptive pills were tried and none seemed to make a difference.
Eventually in 2014, I saw an F2 doctor who suggested I might be suffering from endometriosis.
Two ultrasounds and an MRI discovered she was right and surgery would confirm if it was endometriosis.
WHAT IS ENDOMETRIOSIS?
Endometriosis is a condition where tissue that behaves like the lining of the womb (the endometrium) is found outside the womb.
This tissue can be found in many places, such as the bowel, bladder and inside the abdomen.
Common symptoms include painful or heavy periods, stomach or lower back pain, pain during or after sex and bleeding between periods.
Other symptoms can include persistent exhaustion, discomfort when going to the toilet and bleeding from the rectum.
There’s no cure, but symptoms can be managed by painkillers, hormone medication and removal of the endometriosis tissue.
Last year I underwent two laparoscopies at St Mary’s Hospital in Manchester.
The first in March confirmed the condition and surgeons removed endometriosis that had attached itself to both of my ovaries and formed cysts.
I was assured I should be pain free from that point onwards and be able to experience a ‘normal’ life.
In a matter of months I was back for a second surgery and still suffering with painful cramps, bleeding and fainting as a result of my endometriosis.
I underwent a second surgery, and was pre-warned that I may lose my right ovary if endometriosis had taken hold of it.
Thoughts of my fertility raced into my mind and I worried whether I was losing a chance to have children later in life.
I was lucky, on that occasion, as my surgeon was able to save my ovary but warned me as I recovered that my fallopian tube is scarred and damaged from endometriosis cells attaching themselves there.
The true extent of how my fertility has been affected is not yet known, but becoming pregnant is unlikely to be an unexpected surprise as I currently balance out contraceptive injections with hormone tablets and painkillers.
I am a 25-year-old single woman and I am regularly urged to consider pregnancy early, as waiting is not an option.
Having children wasn’t, and still isn’t, on my list of plans as I focused on trying to build a career and doing what all other young people in their twenties do.
Niamh had two surgeries and is having a third in 18 months, which aims to clear her body of endometriosis growths and cure her painful symptoms
I am now potentially awaiting another surgery, my third in 18 months, which aims to clear my body of endometriosis growths and cure the painful symptoms I currently endure.
Leading a normal life has become increasingly difficult as I struggle more with my symptoms and my career, friendships, love life and social life have all been affected.
Whilst some friends remain supportive when I am forced to cancel plans due to an endometriosis flare up, there are many who have drifted to the wayside.
At work there are managers and senior members who understand it’s not an act and appreciate my hard work and attitude, but there are many colleagues who roll their eyes when I’m sent home or outright ask me if I am ‘fixed’ yet.
It’s a frustrating illness for the sufferer and the ones they love. I struggle with being unable to do everything I can see others my age doing, from having healthy relationships and children to even being able to go to the gym three times a week.
I am lucky to have a good support network of close friends and family who do understand how debilitating it can sometimes be, but there have been many who have thought me to be overreacting or even labelled me as attention seeking when my symptoms are bad.
Whilst I still learn how to make my condition manageable there are still many instances of ignorance about endometriosis.
Endometriosis is an invisible illness that affects just as many women as diabetes, yet it’s sorely misunderstood.
It’s not an illness that anyone can see and that is where many of the problems arise. I’ve met a lot of surprise when I do explain what I suffer from, and many don’t realise there is currently no cure for endometriosis.