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by May Dawn 4 years ago in health

My Journey to Getting an Official Endometriosis Diagnosis

Have you even heard of endometriosis? Many of my friends and family hadn't heard the word before, or at most they had heard the word but couldn't say what it was. I heard the word for the first time last year when listening to the radio at work. It was some sort of Endometriosis Awareness Day, and by golly, have I become aware.

For years I had been struggling badly with period pain and heavy bleeding. My mother had the same problem, so naturally I was led to believe what I was experiencing was "average." I thought all my friends soaked through a maxi pad and tampon every hour. I thought it was normal to feel grey in complexion and fighting the agony of monster cramps. As I got older I ended up taking time off work for a day or two each month because it'd gotten so severe. Of course I'd never tell them the real reason I was off, I'd make another socially acceptable excuse up. I didn't want to be seen as a baby, struggling to deal with something most women experience all the time.

It was in August 2015 when I first started to take notice of what was going on with my body. I'd just signed up for a 10km race which was to take place the following year, and I'd joined my local gym to start training. This wasn't my first 10km so I wasn't too worried about my ability to do it. Within 10 minutes of light jogging on the treadmill I had to press the emergency stop button on the machine. A terrible lower abdominal cramping pain had fired up, like I'd just started a very heavy period instantly. I'm stubborn as a bull so persisted through and walked instead. Over the next few weeks this kept happening every time I tried to jog, I couldn't figure it out. I also began to feel a twinging/shooting pain in one particular spot next to my ovaries. I told the doctor all of this and he sent me for ultrasounds. This was my first experience having them, and I was not a fan of the internal ultrasound one bit. A few days later my doctor rang and told me it seems I have PCOS (Polycystic Ovary Syndrome). It answered a lot of questions when it came to issues such as my weight and excess hair. Still, there was no explanation for the pain.

I left it for a while, to be honest I gave up on training for months and let myself go. I got a little down about the fact people with PCOS have trouble having children. I used it as an excuse to eat what I wanted because what was the point of trying? Thankfully I'm out of that funk now. The months rolled past, and in August 2017 it was time for the 10km. I had got back into brisk walking/attempted jogging a few weeks before the race in the attempt to give myself a fighting chance, what with all the extra weight and lack of fitness.

Around 3 days before the race, something crazy happened. I was lying in bed watching something on Netflix. A period pain started to develop suddenly, so I shot up out of bed and headed for the bathroom, thinking I must have just started a very random bleed. I hadn't bled since May 2016 so was quite surprised to feel this sensation. On the way to the bathroom the pain went crazy, and I started to panic. Maybe I'd eaten something dodgy? I sat on the toilet waiting for something to happen, not knowing what was going to come out of where. I felt something dripping on my feet and realised I was sweating bullets, my whole face and body was soaked through within 2 minutes of entering the bathroom. It wasn't long until there was a mini puddle on the floor. Now I was really concerned. The pain rose and rose, and I felt myself getting faint. I was convinced something inside me was breaking. I got on my hands and knees and cried out for help, before losing consciousness on the floor. I don't think I was out for too long, then I tentatively went back to my bedroom to collapse on my bed. I don't know why but I went on to run the 10km without ever getting any medical attention for what had happened. I struggled at 5km as the pain really kicked in, but as I had raised money for charity I pushed through and walked the rest.

The day after the race, I called up the doctors and they managed to see me that day once I'd explained what had happened. I went in with a list of reasons why I thought I had endometriosis, what else could it be? The doctor agreed and told me to get more ultrasounds. Nothing of importance was found during the scans, although they did tell me I had PCOS again. I told them I was already well aware. But what about the pain? I have been in chronic pain every single day since what I suspect, was a burst cyst. Although there's no proof of that, it's still a mystery.

Since then I've been to see a gynecologist, and she put me on a 2 month waiting list to get a diagnostic laparoscopy. I'm actually looking forward to it. Being in pain every day is no fun at all, and is causing a lot of fatigue and crankiness. I will be back with a full low down on the lap by the end of March. In the meantime, if you are experiencing any particularly bad menstrual pain or weird symptoms, don't be afraid to ask your doctor. I wish I had done something years ago.


May Dawn

I have a lot of feelings and passion. Sometimes I write about them.

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