Hello I'm Isabelle. I'm glad you found me. It's taken me years to get here. Questions such as "Can I do this?" "Is my story worth it?" "Can I make a difference?" were always popping in my head.... So what's changed you may ask? Well.... I did! I also got a gentle push from my friends and family. I have a story to tell that will hopefully help or inspire women like me as well as mothers, sisters, nieces, aunts and friends. And we ALL matter.
In my mid twenties, while I was living in the UK, I was diagnosed with an auto immune disease I'd never heard of and knew nothing about: Endometriosis ... (Adenomyosis & Fibromyalgia came later). It took 14 years and 8 doctors. I had an operation, the surgeon removed very extensive Stage IV Endo that had spread to my ovaries, Fallopian tubes, kidneys, lungs and diaphragm) then gave me a Zoladex shot for the next 6 months and told me I would be fine ... I didn't question... I trusted the doctors somehow.
Since I first got my period as a young girl. I was told by doctors that the pain I was feeling was normal, that my body was changing, that it was part of being a woman, that I had to take paracetamol and rest and that I'll get better soon. As the pain got worse and worse and as I visited many doctors' practices, I realised doctors didn't actually KNOW what was wrong with me. Many of them told me that l should be stronger and take more pain killers, some doctors even told me it was all in my head! I missed a lot of school and social events and had countless doctor's notes to skip PE.
Over the years I've had several surgeries (five to this day) and every time, I got a 6-month round of either Zoladex or Decapeptyl injections. I took many painkillers .... different types, sizes, colours... and I just got on with my life. When as a young girl you are told that something is normal, well, you start believing it and you keep going, trying to live your life the best you can. The pain was so horrible most times I couldn't even walk or move.
It was like someone was reaching inside my belly, grabbing/pulling/stabbing my insides. I would cancel social plans and spend days in bed with excruciating pain, throwing up, sometimes blood, getting awful unbearable migraines and honestly... I thought about jumping out the window many times and hurting myself so it would stop once and for all. Heavy medication at that time was my best friend. I was addicted (even though sometimes it wouldn't help). I then developed a pretty high pain threshold and this became my life. I was alright as long as my pockets were filled with lots of opium-based medication.
Last year however, my pain reached a new level of hell. I collapsed at work on Christmas Eve morning and was rushed to the ER. Doctors found a couple of tumours filled with blood one being the size of a grapefruit in my belly. It was grabbing at my ovary and Endo had spread to the rectum and bowels. We scheduled the operation after the holidays but my body decided otherwise. At the beginning of January, I was rushed to hospital again and had an emergency operation. I started bleeding internally and the tumours were ready to burst. I nearly passed on the table. Surgeons removed the tumours, Fallopian tubes and one and a half necrotic ovaries in torsion. However they couldn't get to the ones near the rectum.
I was given shots of Decapeptyl for months. It only masked the pain and disease and the side effects slowly killed me. Chemo drugs will do that to you: Sleepless nights, hot flashes, night sweats, chills, constant muscle and joint pain, migraines, dizziness, nausea, bone issues, memory problems, joint swelling, blurred vision, hair loss.... I knew these symptoms all too well from the previous shots I had been given years before. I felt terrible and lonely and empty and really not a woman anymore. I was slowly sliding into depression.
The thing is... you can explain your pain but you cannot share it. People around me were either in denial or worried or felt helpless, doing the best they could. One painful evening, I reached out on Instagram and the response I got was unexpected and overwhelming. I found a community out there of women seeking help and support too. I was not alone anymore and it helped me a great deal.
However I was still in pain. Just before the summer of 2016, I was so on the edge that I decided to take the matter into my own hands. I switched to a whole foods diet, (cheese was my frenemy at the time), I educated myself more on my illnesses and sought a more natural treatment with the help of a homeopath. I also tried pain and heat management as well as acupuncture.
Five months later, I am 100% medication free and much happier, considering. I take natural supplements that help with the pain and my estrogen levels.
It is still painful but I do have some pain free or low pain days. I had to cut out many food groups, changed my lifestyle and gathered information on Endo because my body deserves it. I deserve it. I want to feel better without popping pills or having injections all the time. Hormones messed up with my body big time, I will not do that again if I can help it.
This blog is about my invisible illnesses, this corner of my life that you can't see unless I talk about it. And it is high time that we as women spoke up and raise awareness.
I will share healthy and anti inflammatory recipes here as I love to spend time in the kitchen creating/adapting recipes that are Endo and Fibromyalgia approved.
I hope you enjoy it. Meanwhile let's keep fighting... together :-) Thanks for taking the time to read this.
(December 2016)
