Ten Years with Endometriosis

Rose

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.

Ten Years with Endometriosis

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”?

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9 COMMENTS

  1. Wow that is such a hard decision. I was diagnosed with gynae problems at 15 and also told I was lucky. In actual fact it just blemished the next ten years and knocked my confidence. Hope you can come to the right decision for you. Definitely harder when you don’t see the same person each time. Would it help to see a private gynae just a couple of times for a second opinion? I think that’s what I’d do though required a bit of saving!x
    The Giggles Family recently posted…Easy Sweet Green Smoothie RecipeMy Profile

    • Thank you for popping by and leaving a comment – sorry to hear you’ve had gynae troubles too, they really do knock your confidence don’t they? I’m actually covered under my dad’s healthcare (it’s a mutual, so bit different to private health insurance) so may have to look into seeing them for a second opinion. It just hit me how hard the past 10 years have been and how in another 10 years Little Man will be a teenager and I don’t want to miss out on enjoying every second of his childhood because I am ill, you know?!

  2. Amanda, I at a young age also suffered badly with endo. I had a full hysterectomy at 25 ..I already had my family by then…. the best decision I ever made. I do hope you find some relief from what your going through and soon and start to enjoy life again xxxx

    • Dear Brenda,

      thank you so very much for sharing your own experience with me – it really helps to know others have been here and know what it feels like! Pretty much everyone I know who has had a hysterectomy for Endo (even at a young age) have said it was the best decision they ever made, as it gave them their life back. I think I have a lot of thinking to do… xx

  3. Sorry to hear it’s got bad again 🙁 I remember visiting you in Beeston in 2005-6 when it had all come to a head and it was awful to see you so hopeful but with failing health. I’ve not had any kind of gynae troubles really (just the ‘usual’ stuff that’s not normal but easily treatable) and you know I’m very much not maternal, but I have to agree with Brenda that, were I in your place, I would go for the rest of my life as liveable, not survivable.

    Best of wishes for the next few weeks: I do not envy you making this decision!
    Dawn recently posted…And so it begins…My Profile

    • Thank you Dawn – it’s only recently that I have begun to really understand just how sick I was in that final year at uni (and in fact in the year prior to it) and how stinkingly obvious it was to everybody, despite my best efforts to just carry on regardless! I’m beginning to see just how much it has affected me on so many levels, not just physically, and it all makes me quite sad and determined to not let it rob me of my health, happiness and confidence for another 10 years. I’ve made an appointment to see my GP and spoken to our mutual about options going forward, so we’re starting to look at getting that “livable” life back 🙂 xx

  4. I don’t have endo but I do suffer with PMDD so my monthly cycle rules my entire life. I spent years trying to deal with it with herbs and vitamins with some success. The Mirena coil exacerbated my symptoms although it took 4 years for us to realise it was the progesterone in the coil that was making me so much worse. I’m a lot older than you, and also people are only just starting to understand PMDD, but I knew I needed to have a permanent solution. I’ve been having Prostrap injections to put me through a chemical menopause for the past year and 2 months. It’s been like a breath of fresh air (well the air has been needed for the hot flushes but they are nothing compared to the PMDD symptoms I used to get and they’ve subsided mostly now). I’ll be having my hysterectomy next year. The consultant has let me remain on the injections for longer than recommended because of how well I’ve been getting on and because I have a young family and I can’t afford to be out of action just at the moment. I know Prostrap is used for endo so am suggesting it as a starting point to help you delay the hysterectomy as long as possible. xxx
    Gem recently posted…An Unwelcome Adventure!My Profile

    • Hi Gem,

      thank you so much for sharing your own experience with me – aren’t our hormones truly awful to us sometimes?! I am glad you’ve found something that helps at the moment and you have a plan in action for the coming year… do keep us updated on how things go! The Nafarelin I’ve taken does the same as Prostap, but whilst the gynaecologist I saw suggested I could take it up to 2 years at a time (maybe even longer), I just can’t see how that would work to get me through the next 10+ years when I’ve only had 2-3 months grace after my last 6 months’ dose before it has become unbearable again… so it’s back to the doctors we go…

      • That’s utterly miserable and painful for you. I’m glad I finally have some respite and I hope the hysterectomy is the answer. Yes hormones, for some of us, are truly the devil. It’s been horrendous over the years so I really feel for you despite our different diagnoses. I hope there’s an answer that works. If you feel a permanent answer is right girl you then push for it. They are giving the surgery for some younger ladies with PMDD now so there is a precedent being set. Xxxx
        Gem recently posted…An Unwelcome Adventure!My Profile

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