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Niamh’s story: “I've been looking at this thing called endometriosis and I really think I've got it”

Niamh spent years suffering with debilitating symptoms of endometriosis before her own research provided some answers.

Photo of two young white woman in black and white in front of many words describing periods such as painful, flooding

Here, Niamh shares her story as part of our “Just a Period” campaign.

In 2019, I started excessively bleeding. I would walk to work and on arrival, I would notice that I bled through my work trousers. I had to take them off in the toilet, wash them, dry them, then put them back on. And continue working.

One day, I was sat down at my desk at work. I got up and I said, ‘oh, has someone spilt water on my chair?' I put my hand down it. It was me. I had bled all over my seat.”

I'd often have to take my lunch break early, buy new clothing, then go back to work. I was constantly with a hot water bottle. I was bleeding so much, and I couldn't understand why, since I was on contraception.

One day, I was sat down at my desk at work. I got up and I said, ‘oh, has someone spilt water on my chair?'. I put my hand down it. It was me. I had bled all over my seat.

I was also in excruciating pain, it felt like my ovaries were being pulled, my bladder was on fire and I had burning pains down my legs.

It got to the point, where I was so weak and sore I couldn't walk up the stairs and in the supermarket people would offer to help me with my shopping.

A young white women, lying in bed with a blue hot water bottle on her stomach

I was also in excruciating pain, it felt like my ovaries were being pulled, my bladder was on fire and I had burning pains down my legs."

Initially, I was diagnosed with pelvic inflammatory disease, I was put on treatment for that. The tablets I was given were so strong, I had to take the week off work. But, after I finished the course of them, I was not getting any better. The pain was still there.

So, I went back to the doctors and told them, "I've been looking at this thing called endometriosis and I really think that I've got it.”

Everything started getting worse, I lost weight and was constantly nauseous. I could not eat. I could not sleep. Sometimes, I would get up at five o’clock in the morning just to have a bath. When in the bath, I would still be bleeding, and I kept thinking ‘this is not right’. I was exhausted.

As time went on, I was prescribed more pain relief, at this point, I was told that I would have to wait for a laparoscopy. So, I started doing more research on endometriosis. I was on the laparoscopy waiting list for about two years. In that time I called them numerous times to enquire about my appointment.

My mental health began to suffer and I got incredibly low. I had no life. I was on so much medicine, isolated, and in a lockdown. I just kept thinking, 'this is not the life of a 22 year old. This is not the life that I deserve'.

After this, they started taking me more seriously, but I was still living with severe pain. Around this time, my employer introduced private health care, so I opted in.

I've been looking at this thing called endometriosis and I really think that I've got it.”

Photo of two young white women sitting closely together

Within a month, I was ready to have my surgery and it was confirmed that I had stage 2 endometriosis. It was on my pouch of Douglas, my ovaries and uterus. There was also a section by a nerve on my leg, which was causing me the most pain. At this point, it was also confirmed that I had thoracic endometriosis, by my heart, so they couldn't laser it off.

My younger sister Freya was experiencing similar symptoms to me, as well as irregular periods. When I was on my journey, I said to her ‘I think that you have got endometriosis too. Mum had it, and there is a high chance, I've got it. I really think you should get checked, since you're in so much pain.'

I was always in pain. I was on so much medicine, isolated, and in a lockdown. I just kept thinking, 'this is not the life of a 22 year old. This is not the life that I deserve'."

Within two weeks of my surgery, Freya had her surgery and got diagnosed with endometriosis.

We manage some of our symptoms with humour, and had bet on who had endometriosis the worse. We made a handshake, ‘who do you think has got it worse?’.

But actually, the whole time leading up to my operation, I got really upset thinking about how much of my life had been robbed by my symptoms.

The surgeon told me I'd been very stoic and that I’d been suffering in pain for quite a long time. Longer than what I thought. So, I then started thinking back when I was 16 and my friends would always say, ‘oh Niamh, you're always on your period, you're always bleeding’.

As I said, my mum likely had endometriosis. When she was younger, they just had to get up and get on with it. She couldn't talk about it or moan about pain. But women shouldn't have to live like that now. It's not "just a period".

My diagnosis of endometriosis has been a journey for me, but not one I went on alone, as my sister was diagnosed. During our journey, we started an endometriosis Instagram account - @thoseendosisters.

It is a place to share our story, find our endo community, and help others.

A young white women sitting down in a black dress

If you can relate to Niamh’s story, you could have a medical condition that needs treatment. Always see your doctor if you have any concerns.

Find more information and advice in our periods information hub.

If you need to access a support service, please visit our helplines and support services page.