This month is Endometriosis awareness month, a month I always try and mark by sharing my experience with Endo, either on this blog or my Instagram.
I had no idea when I saved this title into our blog drafts at the start of the month, that I would end up in hospital due to a possible endo flare up/cyst. My history with endo goes back a long time before I received a diagnosis.
Many hospital trips resulted in discharges, due to them not knowing a course of treatment, explained away by IBS, possible gall stones, constipation and other issues that can impact the abdomen.
Just before my endo and adenomyosis diagnosis, as I was being prepped for surgery for the removal of an ovarian cyst, I was told, “don’t worry, it is certainly not endometriosis”. On coming round from my operation I was met by the surgeon with the words “you have stage 4 endometriosis”. It had been too severe for the removal of my cyst, which just had to be drained instead, which lead to a further operation by an endo specialist to remove it and explore the endometriosis.
It felt such a relief to have the diagnosis I had known was my fate for so long. I recall sobbing in the surgeons office as she detailed how serious it was, telling her I was so happy that it would have a name and be explored.
But that happiness didn’t last too long. During surgery my specialist discovered I had some endo tissue causing some problems that only an 8 hour upside down operation could repair. It was to be such a serious surgery, that a bowel surgeon was required to be present to help repair any damage to my bowel.
There was something that needed to happen before I was allowed the surgery. I needed to have a healthy BMI. Which was and still is several stone away. My battle with my weight had not only effected my mental health over the years, it was now the big concrete wall between me and the operation I needed.
Several pains have taken me back to hospital over the last 24 months. I learned that my left ovary is tucked down and attached to the front of my abdomen and that my womb is bent in half. Various adhesions are attaching various organs to things they shouldn’t be attached to and I have a fibroid taking up any extra spare space there was.
But still the weight remained a barrier. I am stuck in a vicious circle. Flare ups prevent me from getting out to exercise and the pain can turn me to food for comfort. Not exactly the recipe for weight loss.
Which brings me to this week, which started with me working from home due to experiencing severe pain in my right side. Not my usual side for pain, which instantly gave me cause for concern. I started to document how I felt on my instagram, to highlight how Endo was for me. Then the pain just got too much and Clara took me to A&E. Because of other symptoms I had coincidentally at the same time, the doctor went down the route of a gastro problem and gave me Buscopan to relieve the pain. But instead of relieving anything, it triggered a drug reaction and I was taken into a small room to be monitored as I had vision impairment, high heart rate and high blood pressure.
It was then decided I was to be sent home as it was a gastro virus, but I asked to be seen by a gynaecologist as I knew it was related to my endo. The doctor decided that I would have a scan and admitted me.
I spent a very painful evening tossing and turning, thankfully with some pain relief bringing the pain down from a 9 to a 6 until it wore off. But the next morning I was back to square one, discharged as I was under the care of a specialist at a different hospital. Feeling a bit lost, Clara decided enough was enough, called my GP and now thankfully am going to be seen by her tomorrow.
Sometimes you have to fight your corner and also get your family to fight with you. You know your body and when you’ve been in chronic pain for quite a while, you get to know when something is your everyday pain and when it is something new.
I am very thankful for the NHS and each NHS worker I have met on my journey. Sometimes I think dealing with a Chronic illness is a learning curve for everyone. Everyone from the porters to the specialists offer a high level of care and I don’t know how I could cope without the NHS.
My endo journey is long and slow and yes somewhat held back by my weight. But it’s important to be heard. It is important to be told your opinion on your own body is valid. I will continue to share my story to help those with endometriosis.