Adenomyosis, Chronic Illness, Endometriosis, Health, Life, My Story, The Future, The Present

I Don’t Know How To Begin

Basically, I’m disappointed.  I’m not sure what annoys me more right now – my body, my state of mind about this subject, or just the universe in general.

I had excision surgery for my Endometriosis pretty much bang on 18 months ago.  I had a fantastic Specialist who still takes care of me now, and I would trust them with my life.  They always have my best interests at heart, and have worked so hard to get me well.  So I’m definitely not annoyed with them or their care, because it has been exemplary all the way.

Since that surgery 18 months ago, I have been more well from an Endometriosis point of view than I had ever been before.  In fact, since that surgery I have probably felt the healthiest from a Gynae perspective than I have for… um, about 8 years?  Yes, that surgery and the after care really did make all the difference for me.  Granted, I have been using medical management as well since the surgery, and that has taken a bit of experimentation to get right, but still having excision surgery has been one of the best things for my health.

Over the last 2 months though, all of my hormonal symptoms that are related to my Endometriosis / Adenomyosis have gradually come flooding back.  The pain, increased bleeding, nausea, fatigue, bloating (also known as Endo Belly), acne etc – it’s all coming back to haunt me.

I don’t know how to feel about this to be honest.  I feel a bit like I’ve been cheated by the Universe, because I felt so well that I had this tiny hope in my heart that maybe I would have many wonderful pain and symptom free years ahead of me.  But sadly, that hasn’t turned out to be the case.  I did have a pretty awesome past 18 months though, so at least I have the memory of that to hold on to.

I have truly appreciated every moment of good Gynae health that I’ve had over the past 18 months, especially since it has taken so long to finally find relief.  But to have it all suddenly swept out from under my feet again is, understandably, difficult to process.   To have to go back to my Specialist and say ‘what now?’ was heartbreaking in a way, because the thought of having to start all over again and trial new treatments is quite daunting for me.

It’s not as if I don’t have enough defective body parts that I’m currently trying to manage and deal with, without having my pelvis thrown in on top of the pile once again.

For now, I have started a medication that will switch my hormones off altogether, just to give me a break from it all.  It’s early days with that, so it’s just settling in and hopefully it won’t disagree with my body too much.

That’s only a short term thing though, so it’s what we do after that which is going to count the most.  There’s the potential I could go back on my old meds that worked well until recently, and see whether my body is happy to stay under their spell once I’ve had a kind of ‘hormone reset’ with this short term medication I’ve just started.

If that doesn’t work, then who knows?

My Specialist has said they’re not ruling out the possibility that I may need further surgery at some point, but I’m trying not to think about that too much at the moment.  It’s not that I can’t handle surgery and the recovery required (because I know that I can), it’s more the mental side of having to put my broken body through yet another surgery.  Knowing me, if I do have another surgery then I’ll be thinking ‘how long am I going to feel well for this time around?’, but of course that’s a question that no one knows the answer to.

At the end of the day, I just have to take things one step at a time and live in the moment as much as I can.  But some days, it’s just really really hard to persevere.

There are times when I feel like as soon as I ‘fix’ one thing and get it under some semblance of control, another symptom pop up or another body system starts showing signs of wear and tear.  Often it’s like a challenge to see how long you can manage something before it starts to flare up again, and requires modifications to treatment, or in some cases totally new treatments altogether.

Honestly, I’m not really sure why I’m here today.  I just need to spill something out of my brain so that hopefully it throbs less inside my skull.

If you’ve made it to here, then thanks for listening.

C xx

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Adenomyosis, Chronic Illness, Endometriosis, Health, My Story, The Future

Z Is For Zoladex

A new hormone treatment,
Awaits me in the morning.
But this innocent looking box,
Does come with a warning.

I’m not exactly new to it,
As I’ve had this treatment before.
But even though I’m experienced,
It still frightens me to the core.

As it is strangely named Zoladex,
Who knows what that word means?
However this weird sounding Z word,
Feels more sinister than it seems.

It turns off your hormones,
Like the flick of a switch.
After this I’m not sure how my body,
Will know what way is which.

The side effects last time,
Were not very pleasant,
But I’m assured this time around,
That less issues will be present.

Switching off my hormones is meant,
To ease bleeding, nausea and pelvic pain.
So all I can do is trust in my Specialist,
And hope this treatment provides some gain.

Chronic Illness, Endometriosis, Health, Interstitial Cystitis, The Present

Making It Through Friday When You’re Exhausted

If you’re hoping this is the post where I tell you there is a magic cure for waking up exhausted, then I am sorry to disappoint you. There is no little known secret way (as far as I know) to power through the day when you wake up feeling like you need to sleep for a month. But I digress, as there’s no point talking about something that doesn’t exist.

Today has been a hard day, a trying day where I woke up wondering whether it was even worth the trouble of getting out of bed. No, this is not laziness as some people may presume, but instead the dragging exhaustion that comes with being chronically fatigued due to the multiple illnesses my body is trying to handle.

Currently, my worst symptoms are coming from my bladder (pain and peeing a million times a day), pelvis (uterus seems to be intent on continually spring cleaning itself), shoulder (well it’s dislocated, so no surprises there) and my back (because my spine is wonky, but that’s a whole ‘nother post I need to write). So yes, you could say there is a lot going on.

I woke this morning groggy and feeling like I hadn’t slept, which is partly true considering my bladder has been getting me out of bed through the night lately. But I had work to go to, so there was no option of staying in bed and turning myself into a duvet burrito (yes it’s a thing – Google it).

So up and out of bed I got, dragged myself through the shower and made myself look pretty. Wasn’t until I got to breakfast, and then to work, that people began telling me how pale I looked. Uh oh, pale is never a good sign considering I have an English Rose complexion on a good day.

Somehow I made it through work, got my brain to function by drinking plenty of water and inhaling jellybeans at my desk, caught the bus home and am now sitting in front of my laptop writing this.

People may read this and say ‘well, if she made it to work things can’t be that bad!), but that’s a matter of personal opinion I guess. When you walk in and your Boss asks you what is wrong and comments on how pale and washed out you look, there must be something quite wrong if they’ve noticed. I usually do my best to hide the effect my symptoms have on me and carry on, but some days it just isn’t possible to hide it all without having some outward visible signs that today isn’t a good day.

Right now, my body feels cold, drained and heavy. I feel like I need to sleep for a month solid to have some kind of life brought back into me. Although in the back of my mind, I know that sleep just doesn’t seem to give me the energy and refreshed feeling it used to about 5 years before I was diagnosed. There really is something funky that being chronically ill does to your sleep, that’s for sure!

Ugh, don’t feel like this post really has a point, so I’ll leave it here. Maybe I’ll come back when my brain feels a little less sluggish, and try to post something a bit more eloquently written.

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Chronic Illness, Endometriosis

Leaving My Support Group

I haven’t really talked about this on my blog much, probably because it’s become so entwined in my everyday life, but on 3rd April 2015 I started an Endometriosis support group for young women living in New Zealand.

Over the past 2 years I have nurtured my group from starting out with half a dozen members, to today where the group has a whopping 233 members!  I never imagined the group would grow to what it has become, especially in the beginning when I thought no one would ever find it on Facebook.

In my time running the group, there have been so many experiences, good and not so good.  Members have shared their achievements and their worst, most pain filled days with me.  This has reflected positively on the group, as it shows that they feel comfortable sharing personal thoughts in our safe space.

Today I posted on the group and told everyone that I am going to leave altogether in a couple of weeks.  This was very difficult and emotional for me, and I think now that I have told everyone there is a lot of emotion floating around on the group as well.

It’s really difficult to leave, but at the same time there are many other parts of my life that need attention.  It’s time to take care of myself, and I’ve made peace with the fact that I’m leaving.

Friday 17th March is my final day, so I’ll see how things play out between now and then.  On that day, I think I’ll be tearful as I say goodbye to my group for the final time.

Awareness, Chronic Illness, Endometriosis, Health, The Future

Endometriosis Awareness Month

Endometriosis awareness month is here again – March is our month!  The time we get to shout Endo from the rooftops and hopefully get more people to know the name of our illness and what it really means.

So if you find it hard to talk about Endo as a lot of us do, this is the time to have courage to drop Endo into a chat with a friend.  Start a conversation, answer questions and be open about how Endometriosis affects your life.

Even if you don’t get understanding from everyone you speak to, you deserve congratulations!  You’ve gotten the word out there, and a few more people will know what to say to others the next time they hear ‘endometriosis’ mentioned in their lives.