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.