This is the story of my battle with Endometriosis and the reason why I'm fundraising to try get to America for life changing surgery. Writing this absolutely terrifies me as the necessity of another massive operation becomes a reality. Before I begin, I would just like to thank everyone that decides to help me whether that be by donating, sharing my story or simply taking the time to read this. I know it's a huge amount of money. I am normally a suffer in silence type of person but at this point in my illness I have no other option but to ask for help. Thank you...
For those of you who don't know what Endometriosis is - it's a condition where the lining of the womb grows out side the uterus and causes pain from bleeding, inflammation and scar tissue. Organs can stick together and nerves can become damaged anywhere in the body, causing an endless list of symptoms.
The last 5 years have been particularly unkind to me but this condition started at the beginning of 2017. I was hospitalised with Pericarditis (swelling of the sac around the heart) which feels like you have an elephant sitting on your chest when you lie down, you can't breathe properly, can't sleep or even sit back in a chair. Over the year, I had recurring Pericarditis every month which got worse and worse to the point that it would never go away. I saw countless doctors and specialist who couldn't offer any help or explanation. I can't remember exactly what it was that made me realise that this was occurring during the time of my month, but I had always suspected that I had something wrong relating to my periods (such as Endometriosis) since a young age. Once I started researching the link, I knew straight away that what I had was Thoracic Endometriosis (Endometriosis in the chest cavity) as all of my symptoms were a text book description.
If you are unfortunate enough to have Endo or know someone who has Endo, you will know how difficult it is to get anywhere with regards to diagnosis and treatment. It currently takes an average of 7 years to diagnose and there is no known cure or even effective treatment. Thoracic Endo is rare and there is literally no-one in the UK who can help me, there is no-one to be referred to as most doctors I've encountered during my fight hadn't even heard of it. I did find a top private doctor who had experienced chest pain with Endo but he was adamant that what I was experiencing was referred pain from my pelvic Endo...
With no other choice or options, due to the severity of debilitating pain, I remortgaged our house for £20,000 and had a massive 7 hour operation to remove the top layer of skin from inside my abdomen and organs. It was a horrific operation and recovery. It has left me with life changing bowel complications and clearly had no affect on what we now know is Thoracic Endometriosis.
So two years on, I am still suffering every day with this debilitating and frightening pain in my chest and still having hospital admissions. This month I have had two admissions, the latest being two weeks long with the worst pain I have ever experienced. To really make the situation more unbelievable, I've been having to go to the eye hospital every other week for the last 3 months because they suspect it's also in my eye which is affecting my vision. There's only a few cases of eye endo reported in the world.
I have recently joined some forums and found lots of women who are experiencing the same thing as me. I has helped me to talk to others and also put me in touch with a centre in America that specialises in Endometriosis all over the body, particularly in the thoracic area. I have sent all my medical history and scans over and they have offered me a lifeline.
The surgeon himself called me from Atlanta after reviewing my case and explained the surgery they will be able to give me. They are going to operate on my chest and cut out all lesions found on the lung, diaphragm and heart sac. I also have to have another abdomen procedure to check the bottom side of my diaphragm and liver which will be done at the same time.
Recovery is going to be be difficult but at least this gives me the best chance of a life without this pain and prevent it from getting worse by more scar tissue build up. I have so much to live for, I have such an amazing family and the most supportive friends I could ask for. This month I am getting married to the love of my life - without him I don't know how I would still be fighting.
I feel so lucky in some aspects of my life but in others, so horrendously unfortunate.
I hope that in the near future there will be more help offered to Endo sufferers in the UK and more awareness for extra pelvic manifestations of the disease. I am kindly asking for any help to get me there, even if it's just a share.
I hope that one day I am well enough and in a position to help others that are suffering.
Thank you from the bottom of my heart.