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.

Helplessness Blues

Man, physically I have been having a rough week. I ran a great race on Sunday, felt pretty darned happy with it, and then……..Cue a long downslide into just terrible-ness. Ok, so I already know that Saturday was shit-tacular (I still want a do-over, World!!), Sunday was good but presented challenges (talk to my left foot blister that still itches..), and then Monday was pretty good, had a fun ride with my friends…And then boom!

I needed someone to help me this week. Big time. 

Tuesday basically culminated in a few bad things: I haven’t been sleeping, like at all. I have problems with what I call ‘roving insomnia’ that present many challenges for me to get any rest. I get terribly anxious and restless at night, and cannot sit still or sleep. At all. Even after running a half marathon, I WAS TIRED and I couldn’t sleep.

This compounded (I wasn’t recovering) and I was exhausted, just exhausted at the onset of the week. Because I am also an idiot, I kept going…Riding, running, working. And then on Tuesday I was pretty busy after work (cleaning cages, cleaning bathrooms, walking my dog, etc), and I started feeling strange.

Cue another night of no sleep… And mystery cramps that were ripping my uterus apart. It. was. nightmarish. I was sweating, writhing in pain and so bloated that my ribs hurt. I couldn’t sleep, was in a tremendous amount of pain, and I was taking too much ibuprofen (by the handful, basically, in a desperate bid to get on top of the incredible pain. Newsflash- it was too much, and it DIDN’T TOUCH the pain). I was up all night in a real sorry state.

Oh and I checked the bottle of extra-strength ibuprofen that I was downing by the handful the next day and you’re supposed to take… 3 per 24 hours. THREE? Anyways, the road to ruin was started.

I ran to work, felt so fucking out of it I couldn’t type. I was nauseous and still having cramps and pain (I have a Mirena IUD which I am planning on getting removed DUE TO THIS – wtf is going on? I have not had such horrible PMS symptoms in 10 years????)… I took more handfuls of pain medication (yikes, a bad idea. Likely came close to causing an ulcer yesterday, but I couldn’t escape the pain)…

Anyway, went on a run at lunch and immediately felt like I was going to faint, or puke or both. I had terrible nausea, cold sweat, dizzy and cramps. It was just awful. I left, and crawled home and lay on the couch to try and rest off of what was rapidly becoming a terrible day and a bad decision all around.

Honestly? I think my crashing sickness was due to a few factors:

• Not sleeping- I was rapidly losing control of my sanity. Rapidly. After running a half-marathon, not healing the way I should be, and not getting any rest at all.
• Horrendous cramps, also causing my not-sleeping and my overdosing on x-tra strength medication. I was beyond desperate.
• Overdosing on pain medication- I wasn’t getting ANY relief, despite the fact that I have the Mirena IUD and this SHOULDN’T be happening in the first place?! All I got was terrible nausea.
• I got my blood iron levels checked and they’re on the low side of normal (Ferritin was 35, which preferably it would be at 50+…) and keep in mind that is with supplementing with iron. Hmmmmmmm.

I also bought myself a CBD+THC spray for insomnia, and I was anxious to try it out- and you know what? I think I finally slept for half a night for the first time in months! It’s no miracle drug, but I was so, so desperate to sleep. I think I was on the verge of a psychotic break. And I finally got SOME sleep. Yeah! And for the record, I have tried melatonin (doesn’t work) and over-the-counter sleep aids (and Benadryl) which do not work on me. Some of them make me actively crazy and restless.

The CBD+THC is no miracle drug again, but I think through some trial and error, I could fine- tune how much I need to allow my body to relax enough to sleep. 🙂