Living with endometriosis

During a flare-up. Bloating for weeks and it’s terrible.

Me normally, no flare-up.

So yeah, I inadvertently got diagnosed (unofficially) last summer. The extreme pain got too great for me to handle and I was desperate. The fun thing about endometriosis is that you can get it at anytime, at any age apparently. Mine got triggered by having the Mirena IUD for some reason, and then it was a full-on ride to pain town for years. 😦 It does not respond to painkillers, at all. I have burned a hole in my stomach from trying to use ibuprofen with Tylenol to try to function, and it never worked.

On bad days I am vomiting in pain with extreme bloating and discomfort. I have chronic fatigue with terrible back pain with flare-up days and my stomach is in a turmoil with IBS-like symptoms. It’s miserable.

On good days I can function, I am not dizzy and incredibly fatigued, my stomach looks NORMAL and sometimes even *gasp* Good??

Sadly, even with a new medication (Visanne) that I started taking about 5 months ago, I don’t have all good days. It started off terrible- horrible periods that hemorrhaged, awful cramps, bloating, back pain, exhaustion- and then for about 2 blissful months I had nothing! It felt incredible!

And then it immediately relapsed and now I have bad weeks again. 😦 the doctor I am seeing- who is a specialist- said to hang on and it should be getting better, but so far it has NOT gotten better. My bad days aren’t as bad as they were, but they still suck a 100000% worse than those good 2 months I had.

I am starting to wonder if Visanne is enough, or I should start looking at other options, like a surgical intervention. This is a life-altering disease, and causes severe, chronic pain and discomfort. I hate living with it, and it greatly affects my personal quality of life.

Disappointing diamonds are the rarest of them all

So why not me?

Why not you?

Why not now?

On a Father John Misty kick right now, for some reasons… 😉

My weekend was much quieter but no less drama for some reason…UGH. I had a great time on Friday visiting with friends out for dinner, and then on Saturday had my usual schedule of riding, moving some jumps in the outdoor arena, running some errands and then went out for a run (was planning to replicate my husband’s route that he ran in the AM, track how long it was) and BOOM! Disaster! Of course the weather was fantastic, gorgeous day, sun shining and all is right with the world, until…

About 30 minutes into my run (my GPS of course was not working so I had the timer on), I was almost stopped dead with sudden, shooting pain out of my hip, pelvis and lower back. It felt like something had come loose in my lower back?! Excruciating. The referral pain was everywhere, weirdly. Hip? Pelvis? Pelvic bone? Lower back, near ish to my tailbone? WTF was going on?

And I couldn’t cajole my body out of it, not in the slightest. I had this bizarre lateral pain, so that every time I was on one foot, my hips ‘flexed’ in this weird and painful way, all the way through to my pelvic bones. Ouch!!!! Goddammit.

And I was at Ross Bay, 4ish kms to my home back. I could only do one thing- limp home slowly. It hurt to run, it hurt to walk, it hurt to stretch it out on the floor, it hurt to shower. Everything hurt.

And it stayed that way through our trip to Craigdarroch Castle, where we had tickets with a friend to go see Nosferatu in old timey black and white, no talking. It was so fun! I was still in a fair amount of pain. So weird.

Sunday I still went riding, but tacking up, grooming, picking up the saddle, getting Oats out of the paddock and picking out his feet were sooooo painful. Just couldn’t move right, my back hurt and my hips were killing me. Riding was fine though, so what gives????

I had a chiropractic appointment (made in desperation on Saturday night after it happened) and he didn’t find anything particularly wrong, nothing new anyways since our last visit. So what the fuck just happened>!!?

UGH UGH UGH. I have a call in to my doctor. And we’ll go from there I guess! 😦

Hard work makes the core work?

After hurting my back on the weekend, I went to the physiotherapist on Monday (which started my week of being late to get home, a trend that started last Friday…) and it became clear that my back was quite strong and takes over the work from my abs.

Too much of this??

Apparently my core is weak? (Which seemed absolutely ludicrous to me, like do you know how many push ups I can do!?) but clearly my back is doing the job of my abs and letting them off the hook.

My back felt better yesterday, so my one trainer generously allowed me to try her saddle on Oats and I rode him in my dressage lesson with Karen. I told her I had been struggling with my back muscles, and wanted to do some core work–and then kind of regretted it, it was TOUGH.

And fun?!

But mostly tough.

The saddle felt really weird, and I felt like I was tipping backwards…We worked on posting trot with a very exaggerated lean back to ‘engage’ my core/lower abdomen muscles, and then sitting, and then canter w/o stirrups. The canter actually felt really good–Oats was pissy at first, and then we did more canter and it felt downright lovely w/o stirrups! We worked on a funny exercise, lifting your legs off the horse out to the side, and and then letting them ‘hang down’ to the side. At the canter! Ahahaha.

We then did some lateral work and I tell you, trying to do that with the borrowed saddle was…interesting. My feet kept flying out in front of me and I was tipping backwards!? I felt rather unstable, which was amusing since our canter-no-stirrups work was so great and solid.

It was a good ride, and I am hoping I can borrow the saddle and that it works out okay today for my jump lesson.