Ten Years with Endometriosis

Ten years ago, this month, I was diagnosed with Endometriosis. I was relieved to finally have a diagnosis, and was told how “lucky” I was to be diagnosed at such a young age (I was 21). Whilst I appreciated the sentiment, I didn’t feel very lucky.

I had been suffering from the most severe abdominal cramps ever since my periods first started in my early teens, and had spent several years dealing with a cycle that could be as short as 2-3 weeks at times. When you feel physically sick and are doubled over in pain during your period, having them come so frequently together (not to mention so unpredictably) can really make your life hell.

Getting a diagnosis didn’t really change anything, other than giving me a name for what I was dealing with. I’d like to say that getting the diagnosis meant that I would no longer have to deal with doctors and gynaecologists who didn’t believe how much it was affecting my life, but sadly that wasn’t always the case! But, still, I had a name for what was happening to me – at least I didn’t have to doubt myself any more…

The past ten years have been hard. I’ve tried pretty much every treatment option available to me, and have unfortunately reacted badly to most. My last appointment with a gynaecologist, at the beginning of this year, set out my options pretty clearly:

1. Continue as I am, with the Mirena coil, and see how long I can cope with the symptoms
2. Take Nafarelin, again, to try and keep symptoms at bay as long as possible
3. Have another laparoscopy

Unfortunately, none of these are great. The Mirena, whilst stopping my periods, does not seem to stop the pain. And as I only came off my last 6 months’ of Nafarelin in February, it just feels too soon to try that again. As for surgery, well my last two laparoscopies were pretty extensive and left me feeling worse than before (my first one set off my IBS, and I ended up with an infection after the second). When I look at the length of relief I get from any of these options, it really does feel rather hopeless.

According to my gynaecologist (not that I ever see the same one twice!) the plan is to get me through to my 40s and then consider removing my ovaries. I’ve always known this was a possibility as my mum had a hysterectomy at 36 and my Grandma had one at 40 (yes, Endometriosis, like Hyperemesis, seems to run in my family!) The problem with this is that I am only 31… I can’t imagine getting through another 10 years like this.

This past week I have felt awful. Admittedly, I have had a virus that has totally floored me, but the worst part is that just as I was recovering from that I have been pulled back down by cramps, nausea, intense bloating, indigestion, the lot. I know it is the Endo, because the symptoms are so typical for me… I was super emotional last weekend in the run-up to it, my pelvis and tailbone have been killing me, and I’ve been dreaming about a combination of babies and ovary pain – you can’t get more hormonal than that!

And I realise that this month the symptoms are worse than last month. And last month the symptoms were worse than the month before. And suddenly I realise I am heading for yet another slide into the abyss that is Endo at its cruellest.

I’m lucky, in that I have support. My mum “gets it” and I have so many online friends who have walked this path before me (and with me). But still, it can feel so lonely sometimes. When your body keeps failing, keeps holding you back, keeps you from enjoying time with your family, keeps you from reaching your dreams, keeps you from living… well, that just plain sucks.

It’s no wonder I’ve been miserable this past week. I thought it was because I was sick. But really, it’s the reality of it all sinking in. It’s realising that, yes I had a virus, but nobody else in the family was so incredibly and completely wiped out by it and the only reason I was is because my body is already working overtime to deal with my crazy hormones and the pain that comes with them.

So now I have some thinking to do. What route do I take? Do I do nothing, or do I go down the medical route? Do I try the gynaecologist’s suggestion of taking Nafarelin constantly, to see if that helps, or is that a bit pointless? According to her, I can take it up to 2 years as long as I take HRT and then longer than 2 years if necessary, only I’d have to start having bone scans after that. But if I do that, how is that any different to having my ovaries removed? Surely pumping my body full of more chemicals just to avoid that surgery for a few more years is a bit mad?

But am I really ready to push for something more permanent? I think I may be getting there, as this week it has really hit me that we won’t be having any more babies (hence my love letter to myself about my journey towards motherhood). The only reason I can think of for those emotions hitting me so suddenly is that deep down, I know I have some big decisions to make. And whilst I know we decided long ago that another pregnancy isn’t an option for us, opting to take that away completely just seems so immense!

So, yeah… this month marks 10 years since I was first diagnosed with Endometriosis. Ten years of having a name for this condition that totally runs my life at times. Do I want to give it another ten years, or is it time to say “enough”?