label design by Kaye Sedgwick
If you're new to the Patch you may (or may not) have noticed I have a page on the blog entitled "Endometriosis". But to be fair I haven't written about it in a good long while so I'll let you off if you hadn't noticed. But go check it out...
And if you're an older reader of the Patch you may have noticed that I haven't written about the topic for quite some time. I do believe my last post was this one.
But why have I not been writing about it much? Have I been spared the pain of Endo since giving birth? Well, not quite!
I have to admit that my periods have been less painful and more regular than ever before with or without the use of contraceptives and for that I have been grateful. But my life has still been far from easy. We've had to deal with the after-effects of my pregnancy first and foremost and all the things that come with being parents to a new baby. But I've still had an ultrasound and two visits to the gynaecologist and am now on yet another form of contraception (the only option we'd never tried). And for me the trade off is hard... I'm ill without the contraception but I generally get other side effects with whichever one I take. And it's balancing which is more preferable. So, yes, my periods are better and I would say quite hesitantly that they are the best they have been for a very long time, perhaps ever. But I don't expect it to last. And besides "better" does not mean "good".
But as I say, they have come slightly lower down my list of priorities this year than a lot of things. I am heavily involved in research on Hyperemesis Gravidarum as I am writing a book about it. Though there are limited resources out there for Endo sufferers, there are even less for women who suffer from HG. And with a baby to take up my time, I just haven't had the chance to write much about the Endo stuff.
Which is why I was so very excited when I heard about A Flash of Yellow, a flash mob of women who were all going to wear yellow, and raise awareness in three locations in London on 1st September by striking silent poses that symbolise what life is like living with Endo. Kaye, who organised it, has written a great post about the day, please do check it out.
I wanted to be there so much. I bought my yellow clothes. I chose some yellow-y clothes for Little Man. I made my preparations. I started putting some money aside each month for the train tickets. I thought we were good to go...
And then last week I went to look at the train times and discovered to my horror that it was going to cost us at the very least £40 per ticket. That meant at least £80 for two of us (there was no way I was braving the train AND underground with a pushchair on my own!) and that didn't even include the tube fares.
Now it's no secret that money is tight here at the Patch. You might remember I got some pretty snide comments last year from someone who believed I shouldn't be having a baby when finances were less than ideal. Thankfully my friends and blog readers all rallied round to defend me (thanks everyone). But what I never full explained was why we're on such a low income.
And the why is this: I have Endometriosis
Endometriosis is a chronic condition. It isn't just a couple of days of pain each month and then you're fine and dandy. It is a daily battle.
It wasn't until I had Little Man that I realised I had been going to school, uni and work for years in the same level of pain as early labour (I remember the doctor who had come to hook me up to an IV when I got sick during labour commenting on how calm I was to say I was in active labour and I pointed out quite calmly that I had worked in this type of pain and had been expecting more!)
It also wasn't until I had Little Man and hit transition super quickly after they broke my waters that I realised the very worst of my periods, the ones that had kept me in bed in terrifying agony for hours on end, were the same intensity as transitional labour (you know, the bit where you're begging them to give you a break and start saying "I can't do this anymore!")
And when you have irregular periods, never knowing when they will arrive, you cannot plan for this. It can catch you out at any time.
Add in the blood loss from heavy periods, the anaemia that sometimes comes with it, the awful treatment from the medical profession telling you "it's normal" and having to hide how you feel because a) no one gets it and b) no one wants to know about your cycle and you've got a lot to deal with.
And that's before the surgery, the crazy hormonal treatments they put you through, and the fact that there is no cure and you're faced with this for many, many, many years to come.
And all of this led to my coming out of work and our decision to live on a single salary.
I used to work full time in a busy tourist office. I was on my feet all day. I had to commute on a village bus that meant I was out of the house between 60 and 70 hours every single week. And during the 18 months I worked there I went through two chemically induced menopauses and surgery. And dealt with huge amounts of pressure from HR and my manager for my absences.
I turned up to work in agony. I went back to work a week after surgery despite being told to take at least two weeks off, because of that pressure. And I sat in the office and cried.
And I developed depression. I realised this was never going to change. I couldn't keep going out every day and putting on a brave face only to fall apart every evening. And I knew that if we were ever to try and start (and raise) a family I would need more strength and energy. Endo isn't just a threat to your fertility, it is also a drain on your ability to give all you want to your kids if you're lucky enough to have them.
In Spring 2010 I left full time work. I left a job I loved because I just couldn't do it anymore. It was a hard decision and one I still worry about but ultimately it was the right one for me.
Endo didn't rob me of my fertility (despite being told at 21 I could have issues, including an increased risk of an ectopic pregnancy due to my fallopian tube having been twisted) but it robbed me of an awful lot of other things.
And that includes money.
I don't want lots of money. It would just be nice to be comfortable. And be able to turn up to things like A Flash of Yellow because I had the money to spare. But I don't. The money I would have spent getting there and back would feed my family for two weeks. It's a no-brainer when you put it like that. But it still hurts...
I am passionate about raising awareness of and supporting women with Endo, just as I am with HG. Neither one takes precedence because both have negatively affected my life in so many ways. But with my focus on the HG book of late (and it being very strong in my mind because of how it has robbed us of the dream of a larger family) I have written more about that of late than about Endo. Which is why I have written this post.
Endo may not be the major player in my life right now like it used to be, but don't be fooled. It is still around, still hiding in the background and making its presence felt every once in a while. And I know it will be back. It always comes back.
And for the 1 in 10 in the UK who also suffer from it, this is their reality too!
Please do check out Kaye's post about their day in London
And check out the Endometriosis SHE Trust for more information and to support the charity.