So March was Endometriosis awareness month, yes I know it’s now April but I did write this in March and then couldn’t decide when it was finished (I’m pretty sure it is now!).
Having an awareness month is good because Endo is not something that is talked about that often, despite the fact that it affects around 10% of women in Australia – I’m guessing this is because it’s women’s stuff and rather personal.
For endometriosis month I thought I should speak out and share my story. It’s something I have been struggling with for half of my life but don’t talk about that often. It’s always good to talk about things that affect you but aren’t often aired publicly incase there are other people out there who share the same experience, or incase it helps one person understand another’s life a little better (which is always good).
I have Endometriosis, I have lived with it since I first got my period, it’s just another thing to add to my list of diagnoses and I hated it but it was under control thanks to regular surgery and hormone therapy. My mother and both of my grandmothers had it also – there is strong evidence that suggests it is at least partly genetic, but there are women who develop it and have no known family history of it. Apart from that there is very little known about it, including what causes it and why – it’s essentially a very confusing and painful medical mystery.
Firstly, what exactly is endometriosis? I’ll be brief – Endometriosis is a condition where the cells that line the uterus (the endometrium) grow in other places in the abdominal cavity. During menstruation it is thought that those rogue cells undergo the same changes that the uterine lining does – swelling, bleeding, pain etc. The two main problems that can occur with endometriosis are pain and infertility. There is no cure for endometriosis and the most common treatments are surgical ablation (removing the tissue via laparoscopy) and hormonal therapy, such as the contraceptive pill and implants. These treatments slow the spread of it but don’t fix it completely. Before I started menstruating I had heard mixed reviews about having periods, some people said it hurt a bit, some said it didn’t hurt at all, some people got PMS and some didn’t. I wasn’t really prepared for what I got.
See, brief explanation, yay!
When I got my first period I thought there was something wrong with my stomach – you hear stories of girls thinking they’re dying when they first start menstruating because nobody has taught them about periods and puberty – my mum had that covered with the book every Gen X and early Gen Y kid knows all too well ‘What’s Happening to Me?’. And, you know, she’s a doctor so she made sure I knew the important stuff. I was prepared for blood and things but not for the pain, I spent the day doubled over and had to go home from school only to be told it wasn’t a big deal, it was my period and I would have to go through this every month of my life until menopause. Yay…
So what’s the big deal about Endo? Why can’t women just push through it and stuff? Well it’s difficult to soldier on when your insides feel like they are trying to get out, or attack you from the inside with rusty blades and chain saws and things (really fellas, you don’t know how lucky you are!) but you look totally fine on the outside. It’s hard to feel comfortable when you’re overflowing an overnight pad or when using a tampon stirs up all the pain in your abdomen even more and don’t even get me started on passing clots – my shower would occasionally look like that scene from psycho…
A ball of misery is the way to describe the only comfortable position during the period week as the foetal position helps relax the spasming muscles just that little bit. I would miss several days of work or school every month because I couldn’t move thanks to the pain and none of my doctors ever suggested taking anything stronger than panadol for it. My lower back muscles and pelvic muscles cramp up and I have to live with heat packs attached to my back and abdomen – no tampons because they stir up the pelvic pain, it’s pads all the way. And it’s granny pants and PJ’s only for the week, don’t even bother with anything tight or elasticised. For the first few days I would dread going to the toilet because I felt like I had a hot poker up my rectum, but it wasn’t all bad because the swelling around my bowel made me constipated anyway (yes I said this would be a tad graphic).
It made me sweaty and nauseated so I felt disgusting. Men, did you know that pads don’t breathe? Yeah, they’re lined with plastic so they don’t leak and have a sticky surface to attach to your underwear. Imagine having that against your skin 24/7 for a week or so. Sound uncomfortable? It is. I guess the fact that tampons and pads have GST on them in Australia because they are considered ‘luxury items’ goes to show how little men understand about periods.
Pain and stuff aside I was never overly concerned that it would affect my chances of having children when the time came to it because, although the endometriosis was extensive and persistent, it never reached my ovaries. I would have an almost 2-yearly surgical cleanout and stay on the pill in the meantime, it was reliable and it worked – sure it wasn’t fun, but I knew what to expect and I ended up with lots of photos of my insides to take home with me – maybe I should create a photo album from them! Yay, remember that time when I had endo on this spot? Yeah, fun times.
Then came Adenomyosis – that’s endometriosis that grows in the muscular wall of the uterus making it bulky and oddly shaped. It affects fertility more than endometriosis. All of a sudden I went from being able to rely on having everything managed reasonably well (that’s well for endometriosis) to being told I needed to consider having children ASAP or miss out completely, having a mirena inserted (that may or may not help) or having a hysterectomy. All of a sudden my choices were taken away from me and due to all my other health issues and financial situation I really wasn’t in a position where I could have a baby. Having no choices completely sucks. Even with my other chronic health issues I have some choices, even though they are limited.
My world fell apart a bit and I had no idea what to do. I began to freak out. I didn’t want a child at that point, I was in no position physically or financially to support one. A hysterectomy was such a final option and would take away any possibility of being able to have children in the future if I wanted to and my condition ever changed or a cure was found. I started to panic and thought maybe I should have a baby if I could, just incase I couldn’t have one later even though I had no idea how it would work out. In my desperation I wanted to become pregnant just because I hated the thought of having the choice taken from me. Having children hadn’t been on my agenda but they hadn’t absolutely been off it, I just hadn’t thought about it much but the thought of not being able to choose was almost more than i could bare.
I decided that I would give the mirena a try for one year and reassess my position after that. it was the option that had the least to consider! There is a lot of very vocal anti-mirena people out there but the people who have success with it aren’t so vocal – I figure that’s because they are out there living their endometriosis or adenomyosis-free lives! Well it was hell to begin with. I was in constant pain and ended up developing a dependance on painkillers because I couldn’t get through the day otherwise. This level of pain after a mirena isn’t uncommon in women with extensive endometriosis or adenomyosis, maybe because all the nerves of the uterus are hypersensitive and the muscles are hyper-reactive, which is common in conditions that cause chronic pain. Whatever it is that causes it, it seems that the women who need it most are the ones who experience the most pain from it. Being my last option before serious, life-changing choices I wanted to stick it out despite the pain. I wasn’t working so it didn’t interfere that much with my life, it was just frustrating and stopped me from doing things.
1 year on and the pain eased so I kept on with it.
In February, just over 2 years since I had the mirena put in I had my routine pre-specialist appointment ultrasound and it showed something pretty awesome, something I hadn’t expected. It showed that my uterus is now normal. This may not sound like a big thing but it’s the first time I’ve had a normal pelvic ultrasound – usually it’s all ‘oh there’s a patch of endometriosis there’ and ‘now your uterus is a bit bulky here and bigger on the right’ and usually they’re pretty darn uncomfortable. This is part of life with Endometriosis and Adenomyosis – annual scans followed by a specialist appointment then sometimes surgery, never things looking pretty normal. I was over the moon – I still am AND I don’t need to think about having children before I’m ready or having a hysterectomy!
Yay, finally it’s medical science and Claire 1 – Endometriosis 0
Do you think you might have Endometriosis or know someone who does? Do you want to find out more about Endometriosis? Head to Endometriosis Australia