My Endometriosis Story – Part 1

endometriosis journey
This love was by my side the whole time.

This is part one of my history with endometriosis and adenomyosis. I have tried to share it in full because each experience shared is an opportunity for someone else to feel a little less alone in this never-ending battle.

My story started a few years before my diagnosis as with most of us. The severe pelvic pain started when I was 15. It landed me in A&E more than once, and each time I was told that it was just ovulation pain and given painkillers. I ended up going to see a GP who sent me for an ultrasound. This of course showed nothing, and so again the doctors attributed my symptoms to normal cycle pain and prescribed me the pill. This did help to some extent for a few years, however my symptoms returned when I was 20 and at university – perfect timing! I became very lethargic, having to sleep after showering. My diet consisted of eggs and crackers due to nausea. I had a fever that wouldn’t quit, and of course the pelvic pain. Eventually I dropped most of my university subjects and moved back home.

I was lucky enough to have a team of GPs who were invested in finding out what was wrong. I saw every specialist from  gastroenterologists to urologists, and had every ‘scopy’ under the sun. The gastroscopy diagnosed chronic stomach inflammation, which is exactly what you want to hear when you live off anti-inflammatories. Following this my GP prescribed me Celecoxib and Omeprazole. I am still on both to this day as they work absolute wonders. When I look back and try to find a reason why it took so long so get a diagnosis, I still don’t blame my GPs. They didn’t have the required level of awareness or education about endometriosis, and certainly neither did I. As a last resort they finally referred me to an ob/gyn who, to her credit, immediately suspected endometriosis and booked me in for a laparoscopy.

The surgery seemed to go well, though at this time I wasn’t sure what I should expect. The doctor never diagnosed me with a particular stage of endometriosis, but from what I could tell it was stage 1. It appeared to be the location of my endometriosis which was causing my pain symptoms. After the excision the doctor put me on another pill to help prevent it from returning. Only a few months after the surgery the pain showed it’s ugly mug again, so back to the doctor I went. The ob/gyn decided to prescribe me Zoladex, and so began my journey into the world of menopause, hot flushes and moustaches. At least the hot flushes provided very convenient internal heating when winter came around.

I was on monthly Zoladex for about 6 months this first time before my symptoms worsened yet again. By this stage I had become aware of the negative experiences others had had with my doctor. It turns out she was more talented at delivering babies than treating endometriosis, unfortunately leaving physical scars as a reminder. Like still too many doctors, she also had the view that pregnancy was a cure for endometriosis. Every single time I saw her she reminded me I should be wanting to have kids within the next 5 to 10 years. And every time I reminded her I didn’t even have a boyfriend. 

A friend eventually recommended me to an endometriosis specialist, and I wasted no time in booking an appointment. This specialist immediately took me of the Zoladex. She informed me that not only was I far too young, but it was also a risk to my bone health. The notion that pregnancy was a cure all was also quickly erased. My new specialist was a talented surgeon and during a second laparoscopy she managed to remove endometriosis previously left behind. It was also during this surgery that she made an adenomyosis diagnosis. I had never heard of adenomyosis before, but strangely I felt relief for the first time in a long time. It provided answers as to why my treatments up to this point kept failing.

This is where I will pause for now. As always, thank you for reading and I’ll be back next week with part two!

Now go and eat some chocolate you rascals.

Amelia xo

@mindbodyendo

 

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