I had suffered with painful and irregular periods from the age of just 14, I spent my entire childhood back and fourth from my GP and local hospital having numerous scans but no diagnosis.
I was refused many smear tests for being under the age of 25 as I was convinced something was wrong but I was told over and over it was just bad periods.
I trialled many hormone pills as well as the coil but nothing seemed to help me, I would bleed 10-16 days per month so heavily that I would regularly faint, have nausea and lose a lot of weight.
I modelled from the age of just 8 up until I was 20 when I gave it up as I was becoming more and more unreliable due to my constant bleeding, feeling sluggish and not myself.
This has continued to go on and ruin my relationships with partners, intercourse for me is extremely painful and uncomfortable, some partners I’ve accused of betraying me and giving me a sexual transmitted disease that possibly hadn’t been found by doctors.
I have lived with this for almost 10 years ( I am now 26 ) In January 2016 I become extremely unwell, I had a job which I had to leave because of my constant fainting, I was struggling to eat and never felt hunger.
From January 2016 my symptoms become more aggressive and I found myself being rushed into A&E for various reasons, collapsing, losing my eyesight and hearing, dizziness, unable to keep solid or liquids down, losing control of my bladder, being unable to open my bowels for almost 7-10 days as well as severe stomach cramps and excessive constant bleeding.
I was finally diagnosed with Endometriosis.
I was first operated on June 2016 which was performed by key hole surgery.
Doctors showed me the photos they took of inside my stomach to show the 7-10 cm cysts that had stuck to my organs such as my bowel, my ovaries and my womb.
The Surgery was very straight forward however I wasn’t given much information about what Endometriosis was.
Once I recovered from the surgery I had previously completed hair and beauty courses and had started my own business in the January after I was forced to leave my job.
Since starting my business of hair and beauty I become unwell, regular hospital visits, many pain days in bed then June came and finally it was time for surgery.
since recovering from the surgery I started my business up again, I managed for 3-4 months through until October where I began to feel unwell again and my bleeding become more heavier than ever before and the pain become unbearable.
I would research into Endometriosis but I never found much information or knowledge shared about it.
I remember reading the Severeness of Endometriosis stage 4 and I thought to myself I’m so glad I’m not at that stage. It is referred to as “Terminal”
Just 4 months after my first surgery after a frustrating 10 years of being turned away by doctors and hospitals, being misdiagnosed with anaemia, Ibs, small appetite and irregular periods my symptoms had worsened.
January 3rd 2017 I was unable to get myself up from the floor. The pain was so aggressive I was violently sick.
I was rushed into my local hospital ( i don’t remember much of it) and taken straight in for surgery. Surgery number 2.
After my surgery doctors explained I have Stage 4 severe Endometriosis and a frozen pelvis as a result of the Endometriosis.
I just cried, I had read horror stories of this how women including Marilyn Monroe and Dolly Parton had tried taking their own lives because of the affects it had on them mentally and physically.
I had more cysts removed from my stomach, bowel, womb and ovaries as well as my appendix which they thought may have been causing some pain however it was proven not to have been the case.
Day three in the hospital after my surgery I thought I’d be able to go home and start some sort of hormonal therapy to keep the Endometriosis from returning so soon and so aggressively again.
Day 5 of recovery in the hospital my stomach blew up so big that I could barely breathe and I was again rushed into surgery again, Surgery number 3.
I was opened from left to right along my knicker line like a C section opening to flush out my stomach along with having drains fitted each side of my tummy into my stomach to drain poison into bags to the side of me as well as having a catheter bag.
My body filled with over 2.5 litres of poison which almost killed me. My level of infection caused by the Endometriosis were in their high 60s, average safe infection levels are usually below 7.
I lost just under 3 stone in weight leaving me 6 stone 10 in the hospital. I was unable to stop my nausea even with anti sickness so I had tubes fitting up my nose and down my throat as well as the tubes in my stomach to syringe the remaining poison which they couldn’t flush from the surgery.
I was unable to walk by myself or even hold my balance, family members were allocating days to come and wash me within my hospital bed and take care of me daily.
I watched my family fall apart and worrying I wouldn’t make it whilst doctors were unsure
Of what to do next, there was talks of another surgery to perform a full hysterectomy and putting me into menopause but they wasn’t confident I would make it through another surgery so soon as well as the facts I long to be a mum some day.
I spent a further two weeks in the hospital fighting this infection with strong antibiotics. Which caused me to become delirious where I was hilucinating and not myself at all.
When my infection levels finally started to come down after a whole 14 days of fighting it asking if I was going to die I was finally able to go home and carry on managing the pain from the surgeries I had as well as completing a course of strong antibiotics.
I would attend the hospital weekly for regular blood tests until they were confident and happy with the levels of my infection caused by the Endometriosis.
Whilst recovering from my two major surgeries that almost cost me my life I was able to slowly gain weight and eat again as I was nill by mouth for 10 painful days in the hospital meaning no foods or drink. I had thrush in my mouth as a result of the medication with cracked lips and sores which also was hell.
March 2017, 8 weeks after I had my surgeries i started to feel a lot better, I was able to see my friends and enjoy lunch and dinner dates, for 4-5 weeks I felt okay.
Then mid April 2017 I was involved in a car accident with my friend, Which wasn’t our fault. We was stationary and a car hit us at some speed of approx 50mph from the rear. At first I thought everything was fine, I had no pain, I was looked over, fine.
The very next day I was having a meal with my mum (pasta) within minutes I was rushed back into hospital with a stomach that had ballooned up like I was pregnant just like before.
The hospital scanned my stomach and performed a internal camera to my pelvis where they identified the Endometriosis was back and again severe.
I started bleeding, heavily, constantly, Sickness, stomach cramps, back pain which was so awful I could barely walk or sleep some days.
After a number of appointments and scans my previous surgeon referred me to London University College Hospital for my next steps meaning more advanced surgery.
Already I’ve had three major surgeries within just 6 months, how many more can my body take.
Every food I now eat blows my tummy up so badly that I look fully pregnant to the point I can barely catch my breath.
I’m a clothing size 6-8 and look pregnant most of the time I eat.
I have been advised to follow the strict Endometriosis diet which is to avoid all dairy, gluten, wheat, caffeine and alcohol.
However my Endometriosis is now so severe that even a simple glass of squash swells my stomach.
I recently attended my long awaited appointment at London University College Hospital July 1st 2017 to discuss what’s next.
After having intense painful scans that bought me to tears it’s confirmed me Endometriosis is Severe stage 4 and I have a frozen pelvis where my organs are stuck together. ( which I knew previously)
My Endometriosis has now spread to my bowel, the muscle of my womb, my Fallopian tubes, my stomach and my ovaries are both covered in cysts.
From here it just goes from bad to worse. July 1st 2017 I officially started my temporary menopause to prepare my for my next surgery to take place within the next 4-6 months to allow time for my organs to shrink to make it safer for the surgery to take place.
I currently feel awful, hot, moody and down in the dumps.
As it stands the plans for my next surgery are to remove part of my bowel which will leave me with a temporary stoma bag ( I’m still trying to get my head around this ) then removing my Fallopian tubes which means I won’t ever be able to fall pregnant naturally ( only via IVF ) and again removing the Endometriosis around my other organs and areas.
However it was important I understood that i am at risk of it being more severe once they are able to see inside and I may have to have more taken away i.e. My womb.
The surgery is looking to take 6-8 hours to perform all of this with many risks.
The Endometriosis can and is known to return within 2 months to 3 years.
Does this give me time to find that special
Somebody and have success with IVF by having a baby before it returns? I don’t know.
Dating whilst fighting a chronic illness is just a no go, I tried it…. it doesn’t work.
There is no cure for Endometriosis
1 in 10 women have it, it’s so common yet so uneducated.
This incurable illness is ruining lives including mine and i feel it’s important for me to help share my ongoing battle to help raise awareness.
I prey one day to find a cure.