Living With...Endometriosis - The M Word

Living With…Endometriosis

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I’ve been tempted to write about this so many times, but have never really known where to start.

Lately, I’m seeing a lot about Endometriosis online and it’s made me want to share my story. I hope it’s not too long and I hope it may resonate with one person, or help someone in some way. For anyone who doesn’t know, Endometriosis is described as ‘a condition resulting from the appearance of endometrial tissue outside the uterus and causing pelvic pain, especially associated with menstruation.’

I started my period around the age of 11. My first period wasn’t all that dramatic. I called my mother, she came upstairs and helped me out, we had a chat about it and we went on with our day. I do remember my teens as being very lonely and very painful. Of course, I had friends in school but most days I couldn’t wait to get out of there and get home to just be able to chill out for a while and not to have to pretend to be okay anymore.

My mother had talked to me about menstruation and what to expect in detail. Nothing was a major shock to me. Except for one thing: the pain. The pain was unbearable. I’d often vomit, faint or be bent over in half clutching my stomach. I would go through maybe three or four packs of sanitary pads in a couple of days due to heavy blood flow and clotting. I didn’t mention much of it to my anyone because I just assumed everyone went through the same thing.

When I had intercourse for the first time, I realised something was very wrong. It was the worst pain I’d ever felt and once I got over my embarrassment and the pain settled down (it took about a week if I’m honest), I went to the GP who was useless. He laughed it off and said ‘it’s never great the first time’ and ‘it’s a psychological thing’ and sent me off home with a pat on the back as I left his office. I felt so stupid.

One day I was even brought to a doctor close to work by my Manager as I’d fainted and banged my head. I was examined by that GP and told I had probably got a STI. I’d had sex precisely once, as it was too painful to even consider trying it again, and we had used protection. I knew it wasn’t that but I felt such embarrassment as well as anger that she would write me off like that.

At that point I’d just finished college and had my first full time job (same job mentioned above), which came with great private insurance package. Once I gained the courage, I decided to take advantage of it and told the GP just to write me a referral letter to a Gynaecologist. He did so, most unwillingly, and two weeks after that first visit with him I was having my first lot of exploratory surgery. I was thrilled and so convinced they’d find something, fix me and I’d be on my way to living a normal life.

Yes, they found something. They found a very small amount of endometriosis, which was lasered off. I came home the same day very happy, if not slightly crampy. I’d been told that a lot of people had a small amount and not to worry too much. I was given the Pill and some painkillers and sent on my way.

For about two or three months I was fine. But then it all kicked off again. One hundred times worse than before and that’s how it remained until I was 30. I’d had plenty of laparoscopies that resulted in lasering off more and more Endometriosis each time, painkillers and different varieties of the Pill in that time and had even managed to have two children. I realise how lucky that makes me. Underneath all of the pain, I was always able to feel a little bit of hope because I had my children.

Unfortunately, after my second daughter was born, it escalated to a point that I just couldn’t deal with anymore. Between pain during menstruation, pain during ovulation, anything up to three weeks of bleeding per cycle resulting in lots of time in bed, I was diagnosed with post-natal depression. Is it any wonder? Just something else to deal with, I thought. Finally, I put my foot down and told my Gynaecologist I needed alternatives. He didn’t have any, he said, and there was only one thing left to try.

So, just before my 31st birthday, I had a hysterectomy and partial oophorectomy. This means I had my uterus and one ovary removed, along with the fallopian tube and part of my cervix. They were all pretty much devastated by Endometriosis and scar tissue from all of the laser surgery I’d had over the 12-ish years period of time. One ovary was left to avoid an immediate onset of menopause. I think my doctor expected me to say thanks or something.

I sometimes wonder had the doctors been more proactive and taken that crying 18-year-old woman more seriously, would the outcome have been the same? I tell myself it would have been because for a long time that was the only way I could deal with no longer having a womb.

Never at any point was I offered counselling (pre- or post-surgery). I do remember a phone call with my husband on the day I signed the numerous Consent Forms to tell him about the last-ditch attempt to fix me. He was cautious, perhaps more so than me, but realistically he knew it was my body and something I’d lived with for years before I met him, and he told me he would support whatever decision I made.

I think there was two weeks between the discussion regarding hysterectomy and the actual surgery. It all went by in a blur between trying to organise care for the kids and my husband taking time off work. His time off ran into the Christmas break, I remember, so he was able to be around for longer, which was great.

So, why am I sharing all of this now, 10 years post-surgery? It’s purely because I believe that more needs to be done to fight the stigma attached to women’s reproductive health, which affects women seeking help for this condition. I think there is still a huge amount of work to be done to improve the general lack of awareness of how women can be affected by it.

Between my first period and being diagnosed, the time that passed was almost 12 years. That’s 12 years of feeling alone, in agony for weeks out of every month, constant worry about whether you’re going to stain someone’s sofa or car seats and of eventually thinking maybe the issue is actually psychological.

There are countless stories of women going to doctors and having any pain dismissed out of hand. Is that based on an assumption that periods are just meant to be painful? Is it rooted in historical sexist notions of women’s hysteria? Or is it just assumed that we are overdoing it for a bit of attention? I’ve never worked that out.

What I do know is that if you get to the point where it’s affecting your daily life, your social life or work, then it’s something that needs to be managed and investigated appropriately.

Trust your body and trust yourself. Cheer louder for yourself than for anyone else. You won’t go far wrong if you do.

Jennie Scanlan
Jennie Scanlan
Jennie Scanlan, Mother of Dragons (well actually, 1 teen, 1 tween and a Ronaldo wannabe), girls rugby coach, foster parent and eternal dreamer. Jennie loves nothing more than being lost down the rabbit hole of her books and Kindle. With a pinch of empowerment, a teaspoon of solitude and the new discovery of a good G&T she is not shy of an opinion or letting you know what passions stir her body and mind. Jennie can be contacted on Twitter and on Facebook