It’s been several years since I last wrote a post here.
There are many reasons for that, while I haven’t stopped being sick I’ve also seen a lot of improvement and changes to my endometriosis.
Although I’ve been feeling better it turns out that endometriosis can often just open the door to more illness.
My last few years with endometriosis
Between the first and second covid lockdown in 2020 I was lucky enough to have another laparoscopy (my fourth). I had the last remaining parts of my endometriosis removed, and I didn’t have much regrowth at all.
The primary reason for the surgery was to remove my mirena and have it replaced. It had actually escaped into my abdomen and was causing a snagging and dragging pain sensation in my left side.
My doctor was convinced I must have passed it naturally but it showed up near my bowel in a scan so I just wish I was listened to earlier and could have saved myself two years of discomfort.
So despite that incident. My endometriosis is doing well. Given how clear my insides are now I’m unlikely to need anymore treatment. Despite what happened with my mirena I would still recommend one overall.
That’s the good news.
Being diagnosed with long covid
So part of the reason I haven’t written here is that I’ve actually improved and didn’t feel like I had much more to say in terms of my endometriosis.
Doesn’t mean I have had perfect health issues though.
I live been living with a fibromyalgia diagnosis since 2017 and then because of those two illnesses I was more run down and when I caught Covid-19 in July 2022 I wasn’t surprised to not really recover and develop long covid.
Endometriosis is the gift that keeps on giving, truly.
My main symptoms are heart palpitations, tachycardia, PEM, brain fog and tinnitus.
And I must say the chronic fatigue and brain fog are much worse than the symptoms I experienced with both endometriosis and fibromyalgia.
A recent study said you have a 30% greater chance to get long Covid if you have some type of hypermobility (which I do).
I mostly managed my endometriosis with pain management and pacing so suddenly not being able to exercise like I used to, meant starting from scratch with learning to live with illness all over again.
I sort of always knew I’d get long covid. There’s a sort of inevitability with chronic illness sometimes. However I felt uniquely placed to cope with both lockdown and this new illness.
It was new but alas I was no stranger to being well. Acceptance came quickly. As I joined new support groups I felt ready for whatever came next.
My heart has already been tested for issues and on paper yet again I was the perfect patient with all results coming back clear.
In some ways it was like starting again at square one but this I knew I could manage, however difficult.
Endohope’s future
So I’m still here working and living despite illness. My endometriosis feels like it’s mostly treated now and I don’t get much pain but I would still like to write here and share advice about what I’ve found helpful from almost 20 years of illness.
Two years on I feel like I have 80% recovered from long covid. My fibromyalgia is manageable too. Still unwell but adjusting to the new normal. I am living well and largely managing things that are still difficult (like work).
Would you still like me to write updates here on the things I find beneficial for long term illness? I may need to diversify my advice as my endometriosis treatment is working.
Still lots more work to do though. I’ll write more updates when I can.