Someone recently asked me what it was like, to have Endometriosis that is, and it’s hard to describe as it’s different for everyone. There are many untrue definitions out there of what Endometriosis is, I’m not a medical doctor so I’m not going to tie myself up in knots trying to explain. However this website is recommended by the Endometriosis Association http://www.vitalhealth.com/endo-blog/what-it-really-means-to-have-endometriosis/
Dr Cook does however give a good description of what it’s really like in layman terms. We’ve all put on those delightful new summer sandals at the first sight of the sun in May, walked all over town in them to show them off, only to regret it that evening due to the large blister on one heel, so we’ll all understand his comparison. Dr Cook describes having Endometriosis as “having tens or hundreds of painful blisters on the inside of the pelvis”, the fact that women experience this pain on the inside and often look fine on the outside makes people doubt the severity of their pain.
It’s 5am and I’m awake again, I just can’t sleep, it’s a Saturday morning in May, it’s at least 25C outside already and it’s going to be a long day. I can’t get comfortable, I’ve a pain in my left side so I try to remember to sleep on my right, I don’t know what that’s about, and because I’m not comfortable when I sleep I’m rigid so my back is now sore too. I desperately need to use the bathroom but my stomach is churning so I don’t want to actually get up in case I throw up…. it’s a Catch 22. I’ve so much to do today and my brain is already racing so no chance of going back to sleep. I must drift off at some point as the alarm wakes me at 8.30. Today is a big day, I’ve 250 kids on stage, they have never all been together for a rehearsal so that’s going to happen in the 45 mins before we have to open the doors for the parents. There’ll be at least double that amount of adults in the theatre based on ticket sales. Its the End of Year Show and the thoughts of standing up on that stage make my stomach churn just a little faster. I choose my outfit carefully, dark colours but not funereal, with pockets, and easy to move around in. Conveniently (said with sarcasm) Aunt Jane arrived yesterday to add to my stress. 8 hours later and it’s all over. I’ve survived, just about. I was on and off the stage so fast, Road Runner himself couldn’t have caught me. The older girls did all the narrator pieces, introduced each group and I was able to coordinate. Which meant I had more freedom. I was running around moving classes up and down off the stage, in and out of the green room, back up into the balcony so my hourly dashes to the bathroom didn’t attract any attention as I was always on my way somewhere. I got through today because I had a fantastic group of teachers that knew what they were doing and it all went smoothly despite the heat in the room. I get through today because every 4 hours since 5am I’ve been pumping painkillers into myself and paracetamol every 2 hours in between. The pockets in the outfit hid those. I have a heat patch stuck to my back under my dress and another on my left side. I flop into bed that night and thank God it’s all over. I can imagine you are thinking this girl needs to get it together if the school concert causes that much stress, surely at this point standing on stage shouldn’t terrify me, I’m supposed to be the one in charge. All that’s fine if it was just nerves but it’s not….. Sunday morning and it’s 6am, I’m awake because I’ve a pain in my left side and I keep rolling over onto it in my sleep, I’ve now propped pillows behind me to see if it will work. My stomach is churning and I need to use the bathroom, but I’m afraid if I get up I’ll throw up. You see it’s not the stage that is causing the problem, while the End of Year show is stressful, and I do genuinely hate being centre of attention, I know the kids will pull it off, I know the parents will be happy whatever their little Jack or Mary does up there, I trust my team of teachers. The problem is Aunt Jane and the havoc she creates when she comes to visit. Because today I’m going to feel the same as I did yesterday, and I just have to wait it out until she’s gone.
What’s sad about all that is that back then I didn’t know that all of that wasn’t normal, I just thought I was one of those unlucky people that had difficult periods. I didn’t know that most women didn’t go through that (and for some women it’s even worse). What’s that famous quote that coaches use, “Pain is weakness leaving the body”, I used to think I was really weak, with a low pain threshold.
In the recent months that I’ve become a member of the EAI, I’ve learned so much about this disease, how it works, what things help, what to say to doctors and consultants. I’ve learned the technical terms for things I never thought I’d need to know and fertility and the possibility of ever becoming a mum is even more on my mind. But mostly I’ve learned that I’m not alone, I’m not mad and I’m not weak. Recently I asked other women to describe what it’s like to have Endometriosis and the common theme would have to be:
Meet my Friend Pain!
Most women mention frequent doctors visits, late night dashes to the Emergency Room. “It means taking one day at a time because it’s unpredictable and you don’t know what’s coming next. Its the unknown and it can be scary”. That’s a difficult way to live. There are women that spend their days on the couch with heat bags and strong painkillers unable to get to work, women that drag themselves half way across the country to see another specialist only to be told some out-of-date theory that has been proven not to work.
But I’m a positive person and I want to focus on the positive, you can’t let the disease define you. Yes you have to take care of yourself and protect yourself and be kind to yourself, but you can’t let it win. Another woman describes Endo as realising how strong she and all the other women are, because they live with this every day.
For all the negativity that comes with this disease, there are positive things too, things you don’t think of. For one there is the actual diagnosis, while this may seem contradictory, for many women who have suffered in silence for years, or even those who have been vocal about it but no one would listen, a diagnosis is a life saver. Suddenly you have a name on it, suddenly you’re not mad, suddenly you’re not a wimp. Now that you have a name you can find other people who know what that name means. One aspect of having a chronic disease for those who are in pain on a daily basis is the loss of friends, friends who get tired of you saying no you can’t go out on the tiles on Saturday night, no to training for next half-marathon. Friends who don’t get it, so your social circle diminishes. That circle only includes friends who won’t judge or criticise you, or try to cure you. For many, it is finding that group of women who just “get it” that brings you the most comfort. By getting a diagnosis you get to join the club, usually it’s online, and sometimes that support network is spread out all over the country. There are some I might never meet, hopefully I will, if only to tell them face-to-face the difference their patient answers and thoughtful reassurances helped in the first few months. For me getting a diagnosis has almost been a relief, it’s been a release. It’s like a new source of energy. Now I’m not shouting it from the rooftops or anything but it means something. Now I can go out and buy the recommended books, I can educate myself on what I actually have, not what someone thinks I might have and I can stop scaring myself googling my symptoms and thinking I’m about to die sometime soon. 😉
The consultant who finally did my diagnostic laparoscopy in June 2015 was the first one to say, you need to know what is going on, for yourself, for your own piece of mind. He was right I did. I cried when he told me what he had found, not because I was upset or because I thought it was fatal, but because finally I wasn’t mad, it wasn’t in my head. The effect that has cannot be underestimated. It wasn’t like I was delighted I had this disease, God no, not for a minute, but I was delighted there was a name to it. The reason I pushed to get that operation done was also thanks to another woman in the EAI group, though she didn’t know that at the time. She had written an article for The Independent which my mother read randomly one weekend and sent on to me. I sat on the bed at home that night and read it, and thought that’s me, turned the page, that’s me too, and the same thing for the 4 pages it took to finish it. The realisation that someone else is going through exactly what you go through is phenomenal, particularly when up to now, you’ve never met someone who has. Armed with that article, I convinced the consultant to operate and find out, it took 6 months and a change of consultant but I got there and I got my diagnosis. That’s the kind of unexpected support you get. That’s a positive in it all. For every question I put to the group, someone has had the exact same experience, and even if there is no solution, that in itself is reassuring, and is calming.
Sure, if I never had the disease, I wouldn’t need that support, but I also wouldn’t have met any of these incredible women. One member describes it perfectly “Endo, for me has brought the most amazing women into my life that are forever friends, those who keep me going and who are my constant support. Endo has also meant I’ve realised how unreal my husband is and that I would be lost without his support”. She’s quite right, I’ve said before the sources of empathy are often surprising, friends you thought you weren’t that close to because you don’t see them that often are suddenly the ones who are there for you, are thoughtful and are fantastic listeners. You might see a different side to your siblings, or in some cases a partner, and again while you wish you didn’t have the disease, look at all that positive energy in your life too.
So yes when people ask what it’s like, most of us will think of pain. If you’d asked me last Wednesday morning when I couldn’t get out of bed or I thought I would pass out, then yes I would have said pain. Especially given that I had 20 boys waiting for breakfast so staying in bed wasn’t an option. But I had lots of positives that day, another bean an ti who arrived with drugs (always welcome!) because I couldn’t sit in the car to drive to the chemist. After posting a brief message in the group later that morning, the thoughtful comments and booster messages got me through the day. They have taught me to stop feeling wimpy or guilty that I’m sitting on the couch with a heatbag.
So yes I have Endo, and yes I feel pain, but that’s not what defines me, or any of those brave women out there that deal with it every day.
We are all ninjas