Category : Blog
Hi, my name is Toral and I have Endometriosis. I am 34 years old, but because of my condition, I feel like I am 84 and that is why I have taken the plunge and decided to write my own blog. It hasn’t been easy to relive some of the worst moments of my life and for this reason it’s taken me a long time to complete this blog. I want to reach out to others who have been diagnosed with this debilitating condition and help them to better understand my journey and my ups and downs. I’ll bet it’s not too dissimilar from what they are going through themselves!
But where to begin, where does every journey begin? Every story? The beginning of course! So, let me take you all the way back to February of 2012. It was one of the most random experiences I have ever encountered. Friday evening, I was sitting at home on my sofa watching a film with my Mum when suddenly, I started experiencing pain in my lower right pelvis. It really hurt! I thought it could be my appendix, so called the NHS help line to ask their advice. After a series of questions and speaking to a doctor, the decision was made to stay home if I didn’t feel like something was ‘going to burst’ in my tummy. I stayed put and went to my doctor on Monday morning. Little did I know that this pain was to be the start of the biggest battle of my life.
I was given several pain killers to see if the pain would go away, and although that didn’t help, we continued with this course of treatment for at least 2 more months before my GP decided to send me to a Gyni. Still, the pain continued and after seeing more specialists and having more tests, I finally saw a 3rd Gynecologist in August 2012 who diagnosed me with Endometriosis.
My mum and I sat there looking at each other confused, not having the slightest clue what Endometriosis was. Whilst all this was going on, I was still working in Holborn, commuting into London daily for my job while in chronic pain for the last 6 months. You never think there is anything seriously wrong with you until you hear it from a doctor.
After my diagnosis, I had to have Key Hole Laparoscopy Surgery the following month in September. For those who don’t know, Key Hole Laparoscopy is a type of surgical procedure that allows a surgeon to access the inside of the abdomen and pelvis without having to make large incisions in the skin. It was still extremely painful and uncomfortable and left many scars on my tummy area. I was hoping to be back at work 2/3 weeks later, but that didn’t happen as I never felt any better. The pain just got worse but the pressure of going back to work was really playing on my mind. I would dread looking at my phone or emails just in case it was from work and if they were going to ask me when I was due to go back to work. The answer to that question was always ‘I have no idea’.
The doctor said I would feel like a new woman after this operation, but I felt the same. The same chronic pain I feel everyday was still there and worsening. Soon, it started radiating down my right thigh and affecting my whole back. Months went by and I was still in the same situation every 2 weeks my doctor would sign me off work again and once again the anxiety I felt would rise knowing I need to deliver this news to my boss. My pain would worsen with the stress of this whole situation.
I was sent on two occupational health meetings which were both nerve-racking and tiring as I was expected to travel into London for these. I still clearly remember the man who conducted the last meeting saying to me ‘God Bless you, I hope you come out of this soon’ and he put his hand on my shoulder to comfort me, like he knew what was to follow in my life!
What I was dreading finally came to my door step, the phone call that HR and my manager were coming for a home visit. I felt sick with worry, like I had done something wrong, but I knew where this was going, and it was heading towards more heartache. As if being in pain 24/7 wasn’t enough, life decided to bring more challenging times.
In June of 2013, I had a home visit from HR and my Manager; all kinds of emotions were flying around in my head before their arrival. I kept myself together for the first part of the meeting as they were asking questions and I was answering them the best I could. I remember crying at one point because I couldn’t take it anymore. The outcome of that meeting meant my contract was being terminated due to medical capabilities, my heart was breaking. I was being punished for something that I didn’t ask for or deserve. As I type this, tears are streaming down my face. I had lost a job that I loved because of something out of my control. My world had fallen apart in seconds. I was diagnosed with a condition with paralysing pain with operations that didn’t work and now I had just lost my job.
A few weeks had passed and I realised just how much pressure the whole work scenario had on me. Once I received my official termination letter, I felt a weight off my shoulders but the pain of losing my job was still there. The dread of breaking the news to my manager that I’m still going to be off sick wasn’t. Time went by and the dear friends I had made, also faded into the background.
Following my first surgery, life just began to pass by in a bit of a depressing blur and before I knew it, I‘d had 6 Laparoscopic surgeries between September 2012 and November 2013. The last one in November was a radical excision surgery where they removed the lining of my stomach to get rid of all the Endometriosis at the root rather than using laser treatment. By far this was my biggest operation and it lasted almost nine hours, during which my ovaries were suspended for the second time.
Despite this, every operation was very hard. This wasn’t to be the end of my journey though, oh no, simply the beginning as only eighteen months later, I was diagnosed with Adenomyosis. This is very common with women who have Endometriosis and it unfortunately comes with chronic pain. As if all of that wasn’t bad enough, I started experiencing daily shoulder pain that would also keep we awake at night with both shoulders hurting all of the time. Filling an empty kettle with water is a chore, reaching into the cupboard to get the cereal box down makes the shoulder pain worse. I have never experienced any kind of shoulder pain until after my diagnosis of Endometriosis and I’m convinced its related to Endo but the specialists don’t agree. Even though my shoulder pain was diminished after my most recent operation, it sadly came back 3 weeks later. If it’s not connected, can somebody tell me otherwise?