I wake suddenly, confused, several pairs of eyes staring down at me. “Hello Cathryn, it’s okay, everything went well, you’re in recovery now.”
I start to cry and the lady holding my hand asks if I’m alright, but I’m shivering fast and feel too sick to answer.
The surgeon appears at my side. Nervous, I move my oxygen mask to the side and ask him what they found. “You do have Endometriosis, Cathryn.” He says to me in a very matter-of-fact manner.
As I’m left to process the news, I think back to when it all started for me as a teenager with excruciatingly painful and heavy periods. “It’s normal.” The doctor would say, so for many years, I put up with it. It was through my mid to late twenties that things grew worse, especially after the birth of my son. For three weeks of the month, I’d be suffering debilitating pelvic, lower back and leg pain. I experienced constant Urine infections, extreme fatigue, nausea and vomiting. I would even suffer fevers, extreme bloating and bleeding from the bowel.
I felt embarrassed to discuss many of my symptoms but also worried in case something was seriously wrong. For years I got passed from Osteopaths to Chiropractors to Physios. The doctor convinced I had a bad back. I went through manipulation, acupuncture and even steroid injections in the spine. All the while I was getting worse and soon became the ‘sicknote’ at work. With the doctors scratching their heads and nothing obvious showing on scans and x-rays, my mental health took a complete nosedive.
“We’ll refer you to the pain clinic,” the doctor had said. “I’m sure they’ll be able to help you there.” The pain clinic, I’d thought expectantly, finally, I’m getting somewhere.
I recall sitting in the waiting room, clutching my pain diary filled with pages and pages of notes on how my life was being so badly affected by countless symptoms and endless pain, I had felt hopeful.
Upset and now angry too, I remember sitting in the cold, sterile room waiting in silence as the doctor read through my notes. “So, we haven’t actually found anything wrong with you,” he said. “I can see you’ve had a scan; an x-ray and you’ve tried physio.” I’d stumbled over my words trying to make the man in front of me understand how there WAS something wrong with me and that what I’d been going through for all those years had been rapidly destroying my life.
That’s when he’d said it, the words nobody with chronic pain wants to hear. “It seems that your pain, Mrs Northfield, may well be psychological.” My heart sunk and my body was wracked with an onslaught of sobs and tears.
“You seem rather upset, should I get someone to speak with you? Are you going to hurt yourself?” These were the things he’d said to me in quick succession.
“What do you want us to do?” he’d asked, as a student doctor passed me a tissue. It was then that I explained my sister had been training as a midwife and had come across details about a condition called Endometriosis. I seemed to have all the symptoms, so I requested, almost begged, that they refer me to Gynaecology.
“I really don’t think you have Endometriosis, but as you are so upset, I’ll refer you for your own peace of mind.” This was said with such mock sympathy, I’ll never forget that experience.
My thoughts are disturbed as the surgeon returns and I hear him say, “we can offer you a hysterectomy.” I look at him confused and ask how bad the Endometriosis is. “It’s very severe, unfortunately, you have stage 4 and what we class as a frozen pelvis.”
I look to the lovely nurse who is still holding my hand, distraught, I explain that I want another baby. She kindly asks the surgeon if there are any other options.
“We’ll refer you to a specialist and they will be able to discuss things further with you.” He replies, then he walks away, likely to get ready for his next patient.
I lie still as I cry tears of sadness and tears of relief. My fight to diagnosis was finally over but my fight with Endometriosis had only just begun!
Thank you for taking the time to read my Flash Non-Fiction story! Most weeks I get creative on my blog and write a bit of flash fiction, but I really wanted to do something for Endometriosis awareness month and I thought what better way than to use my love of creative writing and tell a story.
Sadly, everything you’ve just read is true and happened to me! I’m pleased to say once I was passed to the specialist, I underwent major surgery to remove what Endometriosis they could. I also went on to have a lovely baby boy in 2015. Unfortunately, there is no cure for Endometriosis, and I struggle to this day with the condition and the damage it has caused to my body.
I now have a wonderfully supportive GP and Endometriosis consultant but knowing how bad my journey was to diagnosis I didn’t want anyone else to suffer like I did and feel alone, so in 2017 I set up an Endometriosis and Pelvic Pain support group for Devon & Cornwall. I’m pleased to say it works wonderfully to this day.
Please do share this blog post to help raise awareness.
What is Endometriosis? (Taken from the Endo UK website)
Endometriosis (pronounced en- doh – mee – tree – oh – sis) is the name given to the condition where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body.
Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
It is a chronic and debilitating condition that causes painful or heavy periods. It may also lead to infertility, fatigue and bowel and bladder problems. Around 1.5 million women in the UK are currently living with the condition. Endometriosis can affect all women and girls of a childbearing age, regardless of race or ethnicity.
Links for support:- https://endometriosis-uk.org/get-support