Endometriosis - My Experience


March is endometriosis awareness month, and today I'm sharing my experience in the hopes this post reaches someone who may also be suffering from endo (or any one who thinks they might be).

My Story

I started getting periods at 12; I remember feeling crampy but happy because it meant I got a day off school. I spent the day off feeling excited about my journey into womanhood. The rest of my periods, however, weren’t so great, and my excitement soon wore off.

My periods were painful, heavy, long, I had terrible PMS and had constant abdominal pain. I saw a doctor when I was about thirteen because about the pain and the heaviness his response was “It’s normal, this is something you’re going to have to get used to as a woman." I don't ever remember feeling so deflated, unheard, or defensive after a doctor's appointment - how does he know what was normal? He’s never had a period in his life, I hope he doesn't have a wife.

I saw a different doctor about the abdominal pain when I was about 15, he said nothing was wrong and suggested I was either attention seeking or just trying to get time off school, as he couldn’t work out where the pain was coming from, or what it was.

For me the worst thing was the pain; I couldn't lie comfortably, walk without feeling as if my uterus was going to fall out of me, or stand without feeling like I was going to throw up; it got in the way of life (I would curl into a ball at work, cry into a hot water bottle at home and once left a friend's wedding early because of it; my periods sucked).

At 20, I had a cyst burst; I woke up one morning in the worst pain I have ever experienced. I could barely sit up, but I somehow managed to drag myself to the doctor’s office, and then pull myself on to the bed. The doctor prescribed anti-inflammatories and sent me on my way. The pain subsided after a few days.

In 2012 sex was becoming painful, and I started feeling a constant tugging sensation near my right ovary, I thought it might have been another cyst, but it still took over a year before I went to the doctor about it; it seems silly now, but I was scared of being brushed off again. I had scans done where they found uterine polyps, and it looked like my right ovary was enlarged, which meant a cyst was likely.

I was referred to a specialist who said due to my history, it was likely I had endometriosis. I had laparoscopic surgery in early 2014, after surgery I found out the polyps were removed, along with a few chocolate cysts, and multiple adhesions (when scare tissue causes internal organs or tissue to stick together), and I was prescribed the minimill cerazette in the hopes my periods would stop.

After my first surgery - 2014

After my first surgery - 2014

After surgery I felt better, it was as if a weight had been lifted off my shoulders, but I didn’t think other people could see the difference. It wasn’t until people I saw regularly started making comments like “you’re not so grey in the face” and “I can see the colour in your cheeks” that I realised how much endometriosis was affecting my life.

Thankfully, cerazette stopped my periods and In late 2016 despite not having a period for two years sex was becoming painful again, and the constant tugging sensation was back. I was sure the end was back, but I was still scared of being brushed off and it took a year before I saw a doctor about it. To be honest, the only reason I went was because I had a horrific smear test experience; it hurt so much that I cried and almost kicked my doctor in the face (smear tests aren't pleasant, but they shouldn't hurt that much).

My second surgery was in April 2018, while they didn't find much they found some endometriosis and I had a Mirena (a hormonal IUD) inserted, in the hopes I would remain period-less.

After my second surgery - 2018

After my second surgery - 2018

My Mirena Experience

After surgery I spotted for about 50 days, then my periods came back. My periods are heavy (nowhere near as heavy as they used to be, thank god), long (they average around 11 days) and painful (thankfully the pain comes in short bursts rather than me being in constant pain for days). To help with the heaviness and pain I have been prescribed tranexamic acid and buscopan, both seem to work well for me, which has been great. Despite my periods coming back, I am glad I went to the doctor when I did; sex has stopped hurting, and I no longer have that tugging sensation. Of course there is a part of me that wishes I had stayed on the mini pill, but I know of many people who have had success on the Mirena - I honestly just think my body hates me.

Where am now?

Right now, because we’ve moved I’m looking for a new doctor. This means I'm battling the feelings I have around being brushed off bread off and not being taken seriously by doctors as well as feeling as if I’m wasting everyone’s time; It’s a feeling I know I need to work on. I’m also adjusting to life with periods again (sounds kind of dramatic, but I had completely forgotten what periods were like) and I've been having regular check-ins with my specialist, my next appointment is later this month.

I also posted a video about my experience with endometriosis on youtube. You can watch the video here.